tag:blogger.com,1999:blog-77749849953781123612024-02-19T07:40:38.879-08:00A Day in The Life...Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.comBlogger97125tag:blogger.com,1999:blog-7774984995378112361.post-57428774832381307542015-02-02T18:14:00.001-08:002015-02-02T18:14:23.750-08:00Rheumatology VisitNicole saw the PA at the rheumatologist office today. It will be four years this month since she was diagnosed with benign hypermobility joint syndrome (BHJS). BHJS is a common source of joint or muscle complaints. It describes looseness of joints that may be associated with daytime pain, nighttime awakening, or discomfort after exercising. It is also characterized by double jointedness.<br />
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The rheumatologist was the one who got Nicole into pulmonary rehab by suggesting it so I could suggest it to her PH doctor. When Nicole first starting see the rheumatologist she was Vit. D deficient. She has been on 4,000 IU's of Vitamin D for almost four years. She was given a prescription to get it tested and we were told that they like it between 60 - 80 and about seven months ago it was 52 so she may be able to go down to 2,000 IU's even though she tried this before and her Vit. D level fell down and she had to go back up. <br />
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The rheumatologist has been reluctant to treat her with any medication because of all the other medications she is on. Today, she was given a sample of a new type of topical cream that she can try for her pain. Nicole also thought maybe it would help with her site pain. <br />
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We will see how this works as I forgot to ask but I am sure that it is by prescription. She will see the doctor again in August. Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-90655684321495975902015-02-02T05:24:00.000-08:002015-02-02T05:24:08.365-08:00The date is Tuesday, Feb. 2nd, 2010This is the day we will be "officially" told that Nicole has pulmonary hypertension and exactly what her congenital heart defects are. This would be done with a right heart catheterization. This procedure is evasive and a catheter is inserted in the groin and then wound up to the heart and the pictures are on a screen. This can also be done through the arm or through the neck. Nicole has only had it done in the groin. <br />
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If I recall correctly, we left our house around 3:30 a.m. to head to Tampa which is an hour and a half to an hour and forty-five minute drive. We also have to take in account that we are not familiar with the area. <br />
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I know that Nicole is extremely nervous and is crying. I can't imagine what this must have been like for her. The feelings that I had being her mom are different than what she had because it is her. <br />
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It turns out we were late because we were given the wrong time on the paperwork. One of the nurses made me feel like we were at fault but I know we weren't. My father-in-law made the drive over (basically behind us). I'm glad that he was there for moral support for Rick. A lady from our homeschool group had told me that she was going to meet us at the hospital. We were not what I would call "friends" but we were friendly. I really didn't expect her to show up but after the pre-op and Nicole was taken she was in the waiting room. Her and I went to the cafeteria during Nicole's procedure which I will always be grateful for. It kept my mind occupied and I didn't worry like I would have just sitting in the waiting room.<br />
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After the procedure while Nicole was waking up and recovering the doctor came out and told us she didn't respond to any of the tests that they perform during the cath. Her pressures were high and she had severe pulmonary hypertension. The damage that had been done to her lungs was irreversible. He also said they couldn't close the holes in her heart because she would die. I'm not sure why they put her "under" during this as it is very dangerous to do so. <br />
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It was time to start treatment for her pulmonary hypertension. The first drug was oral called Revatio which is Viagra. She would be monitored for 24 hours taking this to keep checks on her blood pressure as this drug will lower your blood pressure. They were also going to get Nicole started on oxygen therapy. A respiratory therapist came in and went over how to use the tanks etc. She also told us who would be meeting us at our house when we arrived home to get her set up with oxygen in the home. I believe we left late on Wednesday afternoon and the respiratory therapist met us shortly after we arrived. <br />
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Since this date Nicole is on the maximum amount of therapy for her PH which is three drugs. She has had two other heart catheterizations to check pressures and how well the medications are working. Fortunately, these have been here at the children's hospital so we haven't had to travel. The cardiologist who does these always makes Nicole spend the night just as a precaution. She can't move for about four hours or so after the procedure. Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-80337245980383563132015-01-21T18:15:00.002-08:002015-01-21T18:15:59.251-08:00The date is Friday, January 22nd, 2010We arrive at the cardiologist's office. The nurse does an EKG and then we're told she will be having an echo. The person who did the echo was awesome and put both Nicole and I at ease. I will always be grateful to her.<br />
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After the echo was done the doctor comes in. He was very nice. We were told a lot of information this day and this is the day our whole life as we knew it changed.<br />
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First we are told that Nicole had been born with a large 2.4 (or so) cm hole in the lower chamber of her heart (ventricular septal defect VSD) as well as several smaller holes (referred to as swiss cheese holes) also in the lower chamber of the heart. I don't remember if the hole/flap in her upper chamber (atrium septal defect ASD) was discovered this day as it is very hard to see on an echo. We were also told that because of the lack of diagnosis she developed Eisenmenger's syndrome which is a rare progressive heart condition that occurs mainly with VSD's that aren't diagnosed which causes reverse shunting of the heart. This causes the oxygen rich blood that should be going to the lungs to go to her extremities instead because of this lack of oxygen in her lungs she has blue/purple fingernails and toenails. We were also told because of these congenital heart defects she also developed pulmonary arterial hypertension (PAH/PH). I had never heard of this but I knew enough medical terms to know it had something to do with lungs, arteries, and high blood pressure which it does. Basically, your lungs have a blood pressure (not associated with your blood pressure that's taken at every doctor's appointment) PH causes the pressure within the lungs to rise which causes the arteries in the lungs to narrow and close. <br />
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We were told there's no cure and it's usually fatal. The only "cure" (which isn't really that) is a lung transplant which in Nicole's case would have to be a lung/heart transplant. <br />
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We were told that she wouldn't be able to work and hold a full-time job. That the medications available to treat the disease would only slow and maybe stop the progression of the disease but not reverse it.<br />
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We were told that Nicole would never be able to get pregnant as the stress on her heart could be fatal. We were also told should would have to get routine monthly blood work, be on oxygen at least at night while she slept and while she's home for the rest of her life. <br />
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We were also told that to be "officially" diagnosed she would have to have a right heart catheterization which would mean driving to the children's hospital in Tampa. This will be another blog. The doctor was confident though that this was the diagnosis because the pressures were severely high.<br />
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Five years later.... Nicole is twenty years old now. She is getting a Bachelor's of Fine Art in Illustration online and is an incredible artist (yes.... I am bias)!!!!! She is on oxygen now 24/7. She is on a triple therapy regime for the treatment of her PH which includes two different oral meds as well as a continuous medication that she receives through a catheter in her skin through an infusion pump. About once a month she has to change the site usually because of infection and when she does it causes great pain for the first seven to ten days for which she must take narcotics to control that pain.<br />
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She has to get a monthly pregnancy test which is a requirement by one of the medications as it is known to cause birth defects. She also requires a whole slew of blood work every three months to keep tabs on her platelet count (which is chronically low), her red blood cells, her potassium levels, her magnesium levels etc. <br />
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She sees her PH specialist every three months; her primary care physician every two months; she sees a rheumatologist for benign hypermobility joint syndrome which is also something she has had since birth which was diagnosed in 2011 every six months; she sees her psychiatrist for OCD and generalized anxiety disorder that was diagnosed in 2004 every three months and she is monitored at the University of Florida Congenital Heart Clinic as well as the Lung Transplant program and goes there for pulmonary function tests and other lung function tests as well as a EKG and echo every six months.<br />
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I am so very, very grateful that the medications keep her stable, however, the side effects cause their own problems from chronic low platelet count to chronic nausea, diarrhea, joint pain, site pain and dizziness among others. <br />
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We always tell Nicole she is one in a million because when she was diagnosed with PH I believe the statistic of children who diagnosed with this disease was 1 in 2 million. Both PH and Eisenmenger's are rare diseases according to the National Organization for Rare Diseases (NORD) which means less than 200,000 Americans a year are diagnosed. <br />
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The medications for PH are considered orphan drugs because they are rare they are extremely expensive. Nicole's infusion medication alone costs more in 2 months than my husband makes in a year. Fortunately, since Nicole is on disability the insurance she currently has covers all her meds with no out of pocket costs. I thank God for this everyday. She loses her insurance later this year and will have to switch because her insurance is for chronically ill children up to 21 years old. So I don't know if new insurance will cover it without a co-pay. <br />
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While our lives were changed forever this day I am grateful each day for Nicole, the doctor's, the medication etc. I still have trouble understanding how a congenital heart defect wasn't diagnosed for fifteen years. If it had been diagnosed she wouldn't be sick like she is. I guess this is something that God doesn't want me to understand. Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-503897326536940282015-01-20T18:19:00.001-08:002015-01-20T18:19:44.805-08:00The date is Thursday, January 21st, 2010 ..... I had waited a month to get Nicole into the pediatrician's office under the guise of an annual check-up. Nicole has been with this doctor's office since she was four years old and she's now fifteen years old. The doctor that was with and treated Nicole for pneumonia and her hospitalization when she was a month shy of five years old left the practice shortly after this. I had seen that he had returned. I wanted to specifically see him and would've waited however long it took.<br />
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This doctor had always listened to me and I hoped he would again. I told him I was here for a specific reason. I explained Nicole's permanent purple fingernails and toenails, her lips turning blue when she was cold or over-exerted herself. I explained how she couldn't ride a bike to the entrance of our subdivision (up a slight incline) without having to rest and the shortness of breath with just walking.<br />
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He checked her vitals. He also put a pulse ox on her finger. That isn't a normal part of a check up and I don't recall having this done at all since her hospitalization for pneumonia ten years prior. It really should be part of every office visit just like height, weight and blood pressure. It would have been a tremendous help in Nicole's case. <br />
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The pulse ox read in the 83 range. A pulse ox measures the amount of oxygen in the blood. A normal, healthy person should have a pulse ox of 98-100. The doctor asked his nurse to get another one as he thought it was broken. The second pulse ox said about the same thing. The doctor then had Nicole wear some oxygen for a few minutes. I don't remember if this changed her number or not. I will never forget him looking at me and saying "this isn't good...." They also pricked her finger to check her hemoglobin which I don't remember if it was high, low or normal but I don't believe it was normal. The doctor said she needed to see a cardiologist He asked if I wanted him to set it up and I said yes. Later that afternoon I got a call from the cardiologist with an appointment for the next day...Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-76845074745661757202015-01-07T05:00:00.000-08:002015-01-07T05:00:45.861-08:00Appointments, lab results and pump problems Happy New Year!!!!!!!! I hope 2015 is the best year yet for you.<br />
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Nicole saw the hematologist on Dec. 30th. Her last visit prior to that had been Oct. 31st. She had a lot of blood taken at this appointment in Oct. All of this lab work came back normal. I had a feeling going into this appointment on Dec. 30th that there is really no reason to keep seeing him. There is no clear cut reason or answer why she has a chronically low platelet count. We know if she ever needs surgery she will need a platelet transfusion. The doctor did say that her previous diagnosis of idiopathic thromocytopenic purpura (hoping for correct terminology and spelling) was wrong and her immune system isn't attacking her platelets. <br />
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The only issue was her IgG was low but not low enough for infusions. He was going to test it again which he did along with some other immunology tests but no follow up appointment was made. I was not surprised. They were suppose to call with the results.<br />
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The hematologist believes that her Eisenmenger Syndrome is the cause of her low platelet count. I have never heard this before which I would think a congenital heart defect cardiologist would know and neither one of her CHD doctor's have every mentioned this. The first hematologist Nicole saw said it was her medication and while I know it does contribute it wasn't the reason as her platelet count was low upon diagnosis. <br />
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Nicole was having pump issues the week of Christmas and the week of New Year's. The majority of the time, at least for Nicole, these occur while she's sleeping. The first time was Christmas Eve day at 9:00 a.m. but she didn't tell me she obviously unkinked the tubing and the pump was working again. It alarmed again at 1:00 p.m. and wouldn't stop alarming so we had to call Accredo (the specialty pharmacy) and speak with a nurse. The nurse had her unattach the tubing at the site and clean off the tip with alcohol as sometimes the Remodulin builds up and I believe we were told it gets sticky and will gunk up. This seemed to work and got the pump to stop alarming and go back to running. <br />
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On Monday, Dec. 29th Nicole's pump malfunctioned with blockage detected twice within a five minute period at 4:20 a.m. and she was able to clear it by running her fingers along the tubing. At 7:35 a.m. it started alarming again and she couldn't get it to stop so we had to call a nurse at Accredo. He had her check for kinks and then had her push some buttons on the screen of the pump and it went back to running. After this Nicole believed she found the kink so we went ahead and changed the tubing. At 10:45 a.m. the pump goes off again for blockage detected and wouldn't stop so called a nurse again. She was able to get the pump to stop by having Nicole check the tubing and hit some buttons but she did say if the pump went off again then she would need to change the pump and if it still alarmed she would have to change her site. <br />
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On the 30th Nicole said her pump went off again at 4:00 a.m. and she unattached and reattached the tubing at the site and it stopped.<br />
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On the 31st when we went to change the pump the pump that we were switching too wouldn't display properly and was going into setup which is something the patient shouldn't have to do. Had to call a nurse again and she had to walk Nicole through the set up process which she was relunctant to do. I believe she was the same nurse we had spoke with for one of the times we had called with this batch of pump problems. It didn't work the first time because the nurse told Nicole to program in 0.000 and it should have been her pump rate that went there and this is why it didn't work. <br />
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Since this time she has had no problems with the pump. However, Nicole started a new vial of Remodulin on Monday and it leaked and I thought that it was because it was the first draw or the syringe was inserted crooked but yesterday it leaked also because it was on my hands as well as Nicole's. I will need to call a nurse today to see what we should do. <br />
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Yesterday she went back to pulmonary rehab for the first time since Dec. 18th. She did complete her full routine but did have some chest pain. On the way home we stopped at the hospital where she gets her blood work to pick up the lab results from Oct. 31st (the hematologist) ; 12/4 (her normal monthly blood work) and 12/30 (the hematologist). I knew what her results from 10/31 were all normal. I also knew what her blood work results were for 12/4 and was a little ticked off that her potassium was low and nobody from the doctor's office told me so her potassium could be adjusted. No real surprises. I was suppose to get a call from the hematologist office with the lab results from 10/31 and surprise no call. I did look at and compare the IgG to her last test in Sept. and it is still low but not as low as in Sept. Her iron was tested as I believe the doctor thought she was getting too much iron (which in my opinion was doubtful). Her ferritin level was suppose to be checked but I only saw iron/plasma and I don't think they are the same thing. Her iron saturation percent was low. I'm not sure what this means. Her platelet count had taken a nose dive between 12/4 and 12/30. Hopefully it will go back up this month. Her reticulocytes which is related to red blood cells were all high just like in Sept. which I was told was no big deal and actually were good. Her IgG was still low but went up a bit since Sept. The IgG subclasses were tested and of the four only subclass 1 was low... not sure what this means either but it looks like it could be related to DTP levels which were tested in Oct. and they were normal. <br />
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Nicole sees her PH doctor tomorrow so I need to sit down today after calling Accredo, and rescheduling a doctor's appointment she has next week and write down the list of questions we have for him. <br />
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I am also waiting on her last echo which she had done in August 2014 at the University of Florida to be faxed to me as none of the doctors ever send copies of any tests to each other. It seems that I am always the one to have to get these and distribute them accordingly. <br />
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<br />Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-69925750853162366302014-12-26T04:33:00.001-08:002014-12-26T04:33:30.069-08:00Miscellaneous RamblingsI hope that everyone had a wonderful Christmas. Ours was low key this year but I always enjoy the time with family. I also like presents too but I can live without them :) The one thing that I want more than anything else is a cure for Pulmonary Hypertension and so far that hasn't come but I believe it will. <br />
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Every morning I watch Joyce Meyer and this morning was no exception. It was a re-run I believe but I always learn something new or if I am struggling with some area a show pertaining to that will air. It's a little freaky sometimes. <br />
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This morning's show was about Trusting God When You Don't Understand. This is something I always have to remind myself. There was a segment with a couple who had lost their young son (under 5 years old) to a rare genetic disorder which at this time is incurable. The mother stated when she found out that she was pregnant with him she prayed that he would not only be a blessing to them but to others as well. <br />
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I can so see the blessing that Nicole has had in our life.... I have learned so much from her and she is truly my hero. I also know that she is a blessing to others as well either through her illness and the PH community as well as the way she lives and copes with it. She is also a blessing through the beauty of her artwork. <br />
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As I watched this segment (which I have seen before) with tears rolling down my face I thought about Nicole and how I don't understand why not so much that God allowed her to be born with congenital heart defects but more so why were her health issues misdiagnosed for 15 years. I am in awe everyday of the things that could have happened and I am most grateful for God keeping her safe. <br />
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Unless you are a parent of a chronically ill child, and it doesn't matter if the child is 2 or 20 they still are your child, it is harder to grasp the struggles that a parent goes through everyday. It is absolutely heart-wrenching to watch your child suffer. The hopelessness and helplessness can be overwhelming at times. There is one particular person that was such an influence after I heard her speak about her struggles with her son less than a month prior to Nicole's diagnosis and I just couldn't wrap my brain around the strength and courage that she has everyday. She was and continues to be an inspiration to me. <br />
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I truly believe to the depths of my soul that if it wasn't for Nicole's illness she wouldn't be the artist that she is today. Her artwork is incredible and I am so proud of how she continues to grow and do things that she never would have thought she could do. The first time she drew a face, the first time she drew a figure etc. I see the passion in her eyes when she completes a piece that is she proud of. <br />
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My heart goes out to those parents that have lost children and I never, ever want to experience this and I hope that God will spare me this pain but I know if I had to choose to either live my life without Nicole or have her live her life without me I would rather live without her. <br />
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As we end 2014 and move into 2015 I would love to see a cure for PH but short of this I would love to see Nicole to continue to grow in her passion of art. I would also pray that she remains stable and that the medication that she takes even with all of it side effects and chronic pain will continue to do this for her. I pray for continued good health for myself and the rest of my family. It is very frustrating and stressful dealing with a chronic illness whether it is for yourself or for a child but I pray that I will continue to provide that support and love for Nicole for as long as she requires me to do so. I would do anything for her and if this is what I need to do I will. <br />
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I would love to see others be more compassionate in regards to someone who is disabled either through a chronic illness or through injury especially when their disability may not be "visible" to the naked eye. I would love to see others think about how they would want someone to hold a door open because they are pushing a person in a wheelchair or are struggling carrying a child etc. I struggle everyday with being judgmental because something looks different than what it is .... I can tell you that God has really opened my eyes to this A LOT since 2010 and continues to do so. As Joyce Meyers says "I'm not where I need to be but thank God I'm not where I use to be."<br />
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I wish everyone a happy, healthy, safe and prosperous 2015!!!!!!!!!!!!Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-50528054334801875832014-12-22T07:13:00.002-08:002014-12-22T07:13:31.551-08:00Frustration with reordering medications......Just spent 45 minutes on the phone which included being disconnected once in the midst of transferring me. <br />
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I have to get Nicole's medication through a specialty pharmacy and they are shipped via UPS monthly. We get three medications through this pharmacy two of which are oral medications and the third is her continuous medication which she receives subcutaneously through her skin via an infusion pump. <br />
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I know how much medication I have left when I call so I start with her Letairis which she will run out of first on Dec. 29th. The customer service representative is suppose to ask certain questions like did she have her monthly pregnancy test etc. and she didn't. They have their own calculations of when she will run out and most of the time with the orals we are in sync. She says I can have this delivered on the 29th.... I said "she runs out on the 29th and I don't want to receive it on the day she runs out" and she replies "well there is a holiday" and I reply "on Thursday". She then says she will have it delivered on Friday the 26th.... this is much better and I will take this. I realize that I should have called last week to have this set up but they should have called me saying it was time to reorder and to my knowledge they hadn't. <br />
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The second medication she was also suppose to ask questions which she didn't. I asked her how many tablets Nicole had based on their records and it was what I had which was enough for 13 days including today. She said do you want it delivered on Friday with the Letairis and I said sure if you can but I don't think you will get insurance approval. She said sure I do this all the time. She then says I will have it delivered on January 2nd. I then asked her to reorder the Remodulin and she says she has to transfer me (usually the same c.s. rep will do it all) while she's transferring me she disconnects me (at least she called me back). During this "hold" time I count out 13 days and find that she will run out on the 3rd.... I am not waiting until the day before she runs out to get her meds. <br />
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I get another c.s rep who is going to do the Remodulin but before she does this I tell her I need her Adcirca for a sooner date than the 1/2 shipment. She said the rep is entering it now and puts me on hold. She isn't able to contact the rep so she is going to fix it herself. She changes the date to the 30th which is still a little to close for comfort but I will live with it. She then says she wants to confirm that the Letairis will be delivered on 1/2 and I said "no" she runs out on the 29th. I am so glad that she confirmed this or I would have been speaking to a supervisor on Friday. <br />
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She then tells me that it is to early to re-order the Remodulin which means I have to call twice a month to reorder her medications. I will call back on the 31st to reorder. I have re-ordered all her medications even when they are a couple of weeks out for the last 4 years. <br />
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When I call back I will also find out if I can get a email or something from UPS stating that I will receive a shipment so I know that it was shipped when it was suppose to be. <br />
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This is so frustrating and this is where most of it comes from on a monthly basis is from the pharmacies. <br />
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Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-27697781153875808012014-12-14T11:48:00.001-08:002014-12-14T11:48:10.650-08:00UpdateIt has been awhile since I have written on this page. I had created a facebook page called A Day in the Life and was using this page to write about my daughter and our journey with her chronic health issues. <br />
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I did like updating the page and did so quite frequently because it was convenient but I have decided that I am going to come back to blogging on here. <br />
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I don't know much about how to step up a blog or making it look pretty like some of the blogs that I see but I hope that I will learn as I go. <br />
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I will still forward my postings here over onto facebook and will not take down the page. I will probably share things on there like articles and such that pertain to Pulmonary Hypertension. <br />
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I am excited about coming back to this type of forum. I am not going to put pressure on myself by saying I will blog once a week, twice a week, once a month etc. I will just do it when I need to update about my daughter. <br />
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I am grateful for the followers that I have on my facebook page and hope that they will follow me over here. <br />
<br />Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-65912968380189411472014-03-09T18:08:00.002-07:002014-03-09T18:08:51.768-07:00Week of March 3rd 2014This week started out on Monday with a trip to University of Florida in Gainesville. This time Nicole was being seen by the pulmonologist in the Lung Transplant Program. She was also having a chest x-ray, a pulmonary function test (PFT) and a 6MW (minute walk). Nicole increased her walk distance from 913 ft to 930 ft. This is good. The doctor said that her PFT was better than the one she had when she was sixteen. I was glad to hear this too.<br />
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Nothing new happened during the visit with the doctor. He basically said that he was a passenger and the Congenital Heart Center was going to call the shots. The nurse coordinator did tell Nicole that post transplant she wouldn't be able to have any reptiles, cats, or birds as pets. This wasn't taken well by Nicole as she does have a turtle that she adores. <br />
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It sounds like she will see the pulmonologist at or around the same time as she sees the cardiologist up there so we don't have to make two trips. She will be seeing the cardiologist there on August 20th and will have another EKG and echo at that time. She is suppose to have a right heart cath at some point between now and then and this will be up at the University of Florida. <br />
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Nicole seemed to like the nurse coordinator and the pulmonologist but Nicole does like everybody for the most part unless they are mean to her.<br />
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On Thursday, Nicole had her 3 month visit with the PH specialist. I had sent an email to his nurse basically telling her what the cardiologist had suggested in regards to Nicole's medication. The cardiologist at UF wanted Nicole's Revatio to be increased from 20 mg three times a day to 40 mg three times a day for three to six months and then increase it again to 80 mg three times a day. The PH doctor didn't have a problem with this, however, he is going to switch her from Revatio (viagra) to Adcirca (cealis). The reason for this is because Revatio while it is available in 20 / 40 and 80 mg strength it is only approved for 20 mg by the FDA and therefore it is very hard to get the insurance companies to cover one of the other doses. With Adcirca she can get the equivalent of these doses with no problem and Nicole will only take it one time a day as opposed to three. I will be refilling her Revatio for the month as it will probably take a couple of weeks for it to go through and get shipped. I hope that she doesn't have any issues switching over. He said she may have some back pain. <br />
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The PH doctor had no problem with increasing her Remodulin but it will be only increased on the same day as she does a site change. He said she might as well have the pain, nausea, diarrhea all at one time and get it over with. <br />
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He didn't want to change her pain management because the stronger the narcotic the more side effects such as drowsiness etc. and he just wants to keep it the way it is. He said that the ibuprofen did not lower the platelet count but it does affect the way the platelets are formed or something like that. I have to transcribe the recording of the appointment, hopefully, this week. <br />
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He didn't realize that Nicole was changing her site every 30 days because of infection which he said may be because of the very high dose of Remodulin she is on. He also thought it might be good to try an antibacterial nose spray that she takes for 5 days but I am not clear on when she is suppose to take it. I will have to contact the nurse tomorrow to ask about this. He also prescribed Hibiclens in the pump that he wants her to use in the shower like a soap or he wants her to soak in it I'm not clear on this either but I do remember him saying to do it with a site change. This will be a trial and error thing as he doesn't know how often she will need to use this. He is hoping that these things will cut down on her infections. <br />
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He was upset with me because his nurse said I was rude to her in an email. I didn't realize I was rude and I am not real sure what email she is referring to but it wasn't my intention. I did send her an email apologizing to her. I need to work on being a little nicer (I am nice but if I am having difficulty getting a medication etc. I can get frustrated and not be nice) and really watch what I say. I am so grateful to the doctor and his nurse for helping Nicole as much as they have with the treatment of her PH. <br />
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After the doctor's appointment we went with Jackie, the other support group leader to visit one of our support group members who is in the final stages of PH as well as some other health issues. The PH specialist (the same one Nicole sees) said there was nothing more he could do for her. She was so excited to see Nicole and gave her a hug and told her that she loved her. I don't think Nicole really realizes what that meant to Suzy. We then went to Costco and Nicole drove a motorized cart for the first time she did an awesome job and didn't run over anybody, knock anything over etc. <br />
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This coming week doesn't have any doctor's appointments on tap only her monthly blood work and a return to rehab. This will probably be the last full week before she has to change her site again. <br />
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I have several things to do this week in regards to Nicole's medical issues. I have to contact Social Security to find out if she meets the criteria for Medicare. I also have to transcribe the appointment with the PH specialist. I need to re-order her Revatio. I need to call Accredo and ask a question regarding some paperwork that they sent me when Nicole got her first shipment of Revatio through them. I have to call Theralogix which is where I get Nicole's Vitamin D that her rheumatologist has her take because the bottle of vitamins that they sent me in January expired in June 2013 so I want to be reimbursed for that. <br />
<br />Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com2tag:blogger.com,1999:blog-7774984995378112361.post-87742767388142577022014-02-23T04:11:00.001-08:002014-02-23T04:11:21.850-08:00Visit to Gainesville.... In November 2013 Nicole's old doctor at Shands Transplant Center at the University of Florida received a referral from the local transplant center requesting Nicole have a second opinion. Nicole's former doctor at UF called and recommended that she see a doctor in the Congenital Heart Clinic. I sat on this information for about a month because of some issues going on at the local transplant center. In December I called and got an appointment for Feb. 21st. In January of this year we received a letter from the local center stating that they would not be listing Nicole. So our appointment to UF was now more of a first appointment and a fresh start rather than a consult/second opinion. It is funny how you see things in hind sight. I couldn't understand back in 2010-2011 when she was being seen there why the doctor was so interested in Nicole's artwork and her personal life. Now I do. <br />
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We left on the 21st at 6:00 a.m. for Nicole's 9:00 a.m. echo and EKG followed by a 10:00 a.m. appointment with the doctor. Nicole laid in the back seat and tried to get some more sleep. We always stop at a certain rest area which we did on the way up as usually by this time the coffee as gone through me and I need a restroom. <br />
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We arrived in Gainseville about 8:20 a.m. or so but I was glad for the wiggle room as Rick missed the turn and we had to backtrack. Fortunately, we were able to find a handicap spot in the parking lot and not have to park in the garage. <br />
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To the second floor we went. I checked Nicole in. We were called for vitals (height, weight, bp, pulse ox). Her blood pressure was a little higher than it normally is and her pulse ox was a little lower than normal but her O2 was set on 3 when she's normally on 5 as we had to conserve the battery as much as possible. Also went over Nicole's list of medication which is long and they didn't have most of them in there system because we left there 2 1/2 years ago. <br />
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We were taken to a room. Rick went down to the car to get Nicole some more water and while he was gone the doctor came into the room. He spend several minutes calculating Nicole's Remodulin dosage. Nicole has been on 200 ng since July 2013. He thinks she should be increased and can tolerate that. I'm sure Nicole wasn't happy to hear this as increases are a bitch with all the side effects that accompany that. Also, talked about her other PH medications. <br />
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The doctor talked about survival rates for transplant and said that while it is a wonderful option for some patients they don't want to pursue this avenue if the quality of life of the patient is good and the medical therapies are keeping the disease process at bay. He did say that patients with Eisenmenger's can have a very good quality of life without transplant into their 40's and 50's. With both transplant centers they recommend pushing out transplant as long as possible because for one transplant has its own problems and issues and they are coming out with new medical advancements every day. <br />
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He said that Nicole would get an echo and then he would see her again to let her know what he thought about it and what he thought in regards to heart repair vs. heart transplant. He did say that Nicole's pressure's in the lung (normal is 25 .... Nicole's are in the mid/high 80's) wouldn't go down but with the Remodulin and other medical therapies her PVR (pulmonary vascular resistance) could drop. After he read Nicole's echo he came back. He was very pleased with her echo and her heart function and how the ventricle's were working. He said that she has an ASD (atrium septal defect) but other doctor's have told us it was a PFO (patent formanen ovale) which is a flap instead of a hole. She has a very large VSD which is the reason she has Eisenmenger's and PH and then two other smaller holes in the muscular portion of the VSD. I guess doctors learn in medical school how to write so patients can't read the writing. I can't read his writing well enough to interpret what he wrote on the picture of the heart drawing he gave us. It has always been a question as to whether she has two or three small holes in the ventricle in addition to the large hole. <br />
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He said that a repair was doable but without consulting the lung transplant doctor he didn't know if it was the best choice even if it was doable. Sometimes it is easier to do in block (double lung with heart). He also said it was his opinion that she isn't ready for transplant yet. <br />
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His recommendations were:<br />
Nicole's Revatio be increased from 20 mg three times a day to 40 mg three times a day and then park at this dose for 3-6 months and then increase it again to 80 mg three times a day. <br />
That she starts increases of her Remodulin because she has room to go up on this.<br />
That she come back to the congenital heart center in six months<br />
That she has another heart catheterization within the next three months. <br />
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The doctor did say more than once that her PH specialist has done a great job in controlling her PH. I totally agree. The doctor also said that they never put one of their patients on IV Remodulin because of the serious risk involved with a heart patient. He was glad that she was on subcutaneous.<br />
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If her PH specialist agrees to this we don't have a problem complying with this. I am uncomfortable with Nicole having a heart cath up at Shands though as the last two of her heart caths have been done by the same CHD pediatric cardiologist and the same anesthesiologist at Arnold Palmer but we will discuss it with her PH specialist on March 6th when Nicole see him for her three month check up. <br />
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The nurse that Nicole had with her old doctor at UF came over and saw us as well as played the cardiologist's nurse. She went over Nicole's medication list and made some suggestions and then consulted the doctor. The first thing that she wanted to know was why Nicole was taking aspirin. I said her former cardiologist had put her on it in hopes of keeping her off of Coumadin (anti-coagulant thins the blood). She also takes hydrocodone/acetaminophen and prescription ibuprofen for her site pain. The nurse didn't like this because the aspirin and the ibuprofen will lower the platelet count and hers is already low. She said there was other alternatives to controlling her pain. The doctor didn't want to switch up her medicines on the first visit nor did he want to step on another doctor's toes. He did say that while he wasn't thrilled with Nicole being on aspirin because of her platelet count unless it got down to 60 K he would be okay with her taking it. The nurse also said that Nicole needs to take her Omperazole (PPO) one hour before she takes her other meds to coat her stomach. Nicole has a lot of stomach issues and most of them are from the medications that she takes and what it does to the lining of her stomach. The nurse was surprised she doesn't have an ulcer. So we will try this. The nurse also said (I have never been told this before) that the ibuprofen will diminish the effectiveness of the Remodulin and if she stopped taking it her Remodulin would work even better. <br />
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Nicole has another appointment with the lung transplant program on March 3rd. This will be a very long day. Friday was a cake walk compared to this. We will leave our home at 6:30 a.m. Nicole has a chest x-ray scheduled for 9:30 a.m.; followed by a pulmonary function test (PFT) at 10:30 a.m. (she hasn't had one of these tests since she was 12 I think); followed by a 6MW test at 12:30 p.m. followed by her appointment with the doctor in clinic at 1:00 p.m. and I believe they are going to order bloodwork which will be done down in the lab after the appointment. I don't expect to leave Gainesville until at the earliest 4:00 p.m. We will eat dinner before we leave and travel home. As soon as we get home we will have to change Nicole's pump. It will be an extremely long, stressful and emotional day.<br />
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Overall, I was pleased with the appointment. I really liked the doctor and it was good to see the nurse and she was very happy to see Nicole. She loves Nicole's artwork and told the doctor what a wonderful artist she was. <br />
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I hope that her next appointment goes just as well. The doctor did say that he would talk to the lung department so the visits could be coordinated so she could be seen at both clinics at the same time so we didn't have to make two trips. <br />
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When we left the medical plaza building it was thundering out with torrential rain. We drove through town and on I-75 through this weather for about 15 - 20 minutes before we made it through it. It was quite nerve-racking. <br />
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I try to find something that I can improve on with every appointment / experience and I need to re-do my medication list to reflect what date she started her medications (the nurse asked me when she started taking aspirin and I couldn't remember) and also I have a sheet with all of Nicole's Remodulin increases listed and I need to make headings so the doctor knows what each column is as there is the date, the pump rate, the strength of medication and how much medicine goes into the syringe. He was unclear what each column was. I think there was something else also but I can't remember what it was that I wanted to tweek. <br />
<br />Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-8303122498757785872014-02-17T03:36:00.000-08:002014-02-17T03:36:31.470-08:00Ignorance... I'm not sure that this is the proper title for this blog but this is all that is coming to mind. It has been a difficult week with fighting to get a medication that Nicole needs which I will write about in another blog as soon as I have it all straightened out.<br />
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This blog today is about my frustration over people and how they will say and assume things about Nicole and her illness but they do not live her life nor are they qualified to even make assumptions or give there opinion without knowing what Nicole goes through.<br />
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I am tired of people saying that Nicole's illness/health issues are over emphasized and that it is no harder for her to travel, go on a day trip to Disney etc. than it is for anybody else. This makes my blood boil. I would say to anybody with this attitude to come spend 24/7 for a week or two at our house and observe what Nicole goes through before you make assumptions that are not correct. <br />
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I have been very focal on facebook about the journey that Nicole and our family goes through with Nicole's illness. I will say that even though you can look at Nicole without her oxygen on and she looks perfectly healthy SHE IS NOT..... she has a rare, life-threatening, progressive, incurable disease. <br />
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I agree that Nicole should be treated as normal as the next person and she shouldn't be looked at any different because of her health issues/disability than anybody else and as much as I hope and pray that she was normal and healthy she is not and at this point in time it is safe to say she never will be. Every day Nicole fights to have a decent quality of life. Nicole can't just be spontaneous and go out somewhere with no thought or planning this just can't happen. <br />
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Travel is a real big issue for Nicole. On Friday of this week we will travel to Gainesville which is a 2 1/2 hour drive each way from our home so Nicole can have a consult at the cardiac clinic at the transplant center at the University of Florida. I have already starting planning for this trip. I have a master checklist of all the things that need to be done or make sure I have for this trip. <br />
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The biggest obstacle that Nicole faces with any type of travel is oxygen. Her portable concentrator will only last about 3 1/2 hours because the battery needs to be recharged. We have a pack that plugs into the wall and this charges her battery. There is also a charger for the car but the problem with this is it doesn't fit in every lighter outlet in every car so I have to make sure it does in ours. We will have to find a spot in the waiting room close to an outlet once we get to Gainesville and then also use an outlet in the exam room. The ultimate would be that they would put her on a tank so she can get continuous as opposed to the pulse (by the breath) of her concentrator. She is very fortunate that she has two concentrators so we could and probably will take both with us. <br />
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We also have to take in account her pump changes which are daily. We have about 27 hours between pump changes before the medicine runs out. This means that everyday about the same time I have this event scheduled in my calendar in red because this is like one of the most important things that Nicole needs to do on a daily basis. We will be gone from 6:00 a.m. and probably not returning home before at least 4:00 p.m. Now I have to decide how we are going to make sure that Nicole doesn't run out of medication because changing a pump in the car or restroom isn't an ideal situation and should be avoided. Does the schedule need to be changed leading up to this day etc? More than likely yes.... just to be safe rather than sorry. All the supplies for a pump change and/or a site change needs to be taken with us along with the medication and the pump. <br />
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We will also have to take all her other daily medication so basically it will be her pill box for the day. She will need to take a pillow and blanket so she may rest during the drive. We also have to load in the wheelchair because the walking is too much for her so Rick and I will take turns pushing her. She will have her concentrator in the chair with her. We will also have a big jug of water in the car so she stays hydrated. She will also have things to do with her whatever this may be. I also like to make sure that she takes a change of clothes (just in case of vomiting or diarrhea). Also needs some snacks to take along just in case. Nicole will get nauseated if she is hungry. <br />
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It is much more difficult if the trip is longer than a day trip and involves flying. There are so many rules and restrictions when it comes to oxygen and those who travel with it must know exactly what the airline requires. When we went to Hawaii in 2011 the airlines were still supplying O2 on the flights. I believe now they do not anymore. You need to know how long the flight is because most of the time the concentrator isn't go to last long enough for a flight. It is something that really needs to be planned for down to the smallest detail. In 2011 you also needed a script for the O2 from the doctor. Nicole can not walk through the x-ray machines with her pump nor could her inhaler (Tyvaso) go through the x-ray machine when we went to Hawaii. Nicole also needs letters from the pharmacy stating all of this as well. <br />
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I would challenge anybody who feels that Nicole or any other person who has a chronic "invisible" illness to get the facts before they judge somebody and say that they are faking it or over stating it. I would challenge everybody to take the straw test. Take a regular drinking straw and put it in your mouth and plug your nose. Then set a timer for 1 minute and breath through that straw. This is what it is like for Nicole and other PH patients to breath on a daily,regular basis. Then take a coffee stirrer and set the timer for one minute and breath through that and this is what it feels like for Nicole to breath after walking down the hall, up a flight of stairs etc. Another option would be to climb a mountain and see how the air thins and affects the breathing the higher up you go. <br />
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Then next time somebody wants to judge Nicole I say come stay with us for a week or two and spend 24/7 with her and then if you still feel her illness is over emphasized than that is fine. Just because somebody looks fine to the eye you never know what that person's life is like. <br />
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<br />Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-28121505577657193292014-02-02T14:04:00.001-08:002014-02-02T14:04:50.949-08:00Week in Review - 1/21/14 Here's my second week in review... so far so good. <br />
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Nicole started her second semester of college on Monday. She is taking Analysis of Form and Composition for the Artist (I believe this is the name or it could be of the artist). I think she's had a little bit of a problem getting back into it especially if it is an assignment she doesn't want to do. She has to do an artist biography of herself which she's not looking forward to. Her assignments are due on Sundays at 12:00 midnight pacific time. I wish she wouldn't wait until the last minute but it is her decision and she has to live with it. <br />
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Nicole saw her counselor on Tuesday and all three of us talked about the issues with the transplant center and how Nicole was feeling about that. She was still in some pain so she didn't go to rehab and we went back home and she went back to sleep. <br />
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On Wednesday, Nicole received a certified letter from the transplant she's been seen at. Nicole had sent an email to the pre-transplant coordinator regarding a letter she received that was dated Dec. 19th but was not postmarked until Jan. 6th and we got it on Jan 7th. The letter basically stated that the center did not have to give a reason why they would not list a patient according to OPTN which I thing is wrong, wrong, wrong. It was also stated that the delay of the letter was due to the holidays. I'm sorry but that is a poor excuse considering it was a 19 day gap between the date of the letter and when we received it. The date of the certified letter was January 24th but it was postmarked until January 28th with us receiving it on the 29th. To say that I am angry about the letter is an understatement. I am not going to say anything more about it and we move on to another center and hope that things go better. Nicole has two appointments schedule for Feb. 21st and March 3rd. This same day we received a packet from the new center with paperwork to fill out. <br />
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Thursday Nicole had to get her monthly blood work done. We are still waiting on the results of that especially for her platelet count, potassium and magnesium levels. We waited in the lab for 40 minutes before she was called and there was only two people in front of her. We were able to walk down the hall to radiology and request a CD of her last chest x-ray for the transplant center and they had it ready before the lab work was complete. Nicole then went back to rehab for the first time since before her site change on January 21st. She didn't do well and her monitor kept beeping because of low oxygen saturation levels and how know how much she gets frustrated by this because she wants to be able to do more. I hope that it was just because of the cold weather. It is suppose to be warmer this week so I am hoping this will help. <br />
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Overall, it was a good week other than the stress of having to start over with the transplant process. It breaks my heart that Nicole has to go through this. It also infuriates me that a medical professional will give an opinion about a patient and base it on the few minutes (20 - 30 minutes) they see this person every three months especially when they have no reasoning for it. <br />
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<br />Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com2tag:blogger.com,1999:blog-7774984995378112361.post-32162975807265914482014-01-26T17:56:00.002-08:002014-01-26T17:58:34.028-08:00Week in Review - 1/20/14 I have a goal to write more here this year. I am going to start with a week in review which I hope to write every Sunday evening just talking about the week we had with Nicole's PH journey. <br />
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Monday started out with me going to Walmart, Michaels and the Dollar Tree. I love the dollar tree because everything is a buck.... period. I have certain things I like to get there. I then went to Michaels as it is in the same plaza with the dollar store. I was looking for some stamping supplies as well as a couple of items for Nicole's drawing class for the new semester. I had no luck with finding what I wasn't able to find through Blink. The university only puts out the supply list two weeks before classes start. As of tonight, I still haven't found one pencil and have to order the other online and the spring semester starts tomorrow. I then went to Walmart because Nicole needed 1 1/2 yards of black, white and gray fabric for her drawing class... curious to see what this is for. I also picked up a couple other things. I had a Publix coupon for Yoplait yogurt buy one and get one free and it was a specific kind. The cashier said they don't take those coupons which according to their coupon policy that take all competitor coupons. A lady came over, I'm not sure what she was, but she took one look and said it's a Publix coupon we don't take it. I was like fine... I will give them my business instead of you which would have worked better if I had told him I didn't want the yogurt but Nicole was out of it and so I got it. The guy behind me in line was shooting me the evil eye. Had lunch at Wendy's which was nice as I love their asiago bacon chicken sandwich. <br />
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When Nicole changed her pump about 4:30 p.m. the silhouette which has the catheter attached was starting to lift off her skin and she had some sores underneath. She use to get these all the time for several months and we tweaked a bunch of stuff like changing the barrier wipe brand and letting the area dry more etc. She would need to change the site soon as she was on day 28. <br />
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On Tuesday, Nicole had an appointment with her psychiatrist. We were in and out of their quite fast which I was happy about and I am happy that it is literally five minutes from our house as opposed to the 20 - 30 minutes when we have to go into Orlando. <br />
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Nicole had decided that she would change her site today. I know she would have probably pushed it to Wednesday but she wanted to go to lunch with me on Friday so she opted to do it today. About two hours after she changed her site she started having pain and before the evening was over she was taking her pain medication. <br />
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Nicole also sent an email to the pre-transplant coordinator asking for another letter from their center stating why they were not listing her for transplant. I had done a rough draft of it and she made it her own. She also said that letters sent to other transplant centers with her records had not been included in the records that we had picked up and she wanted them emailed or faxed to her. At the time of writing this we haven't heard from anybody at the center. <br />
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On Wednesday, Nicole was in a lot of pain and I always try to help her as much as possible by getting her ice packs, getting her water, making her lunch etc. I always make brownie's for her also which is one of her favorite treats. It is painful for her to get up and walk as her infusion site is in her thigh. We spent the day at home. Monday, Wednesday and Fridays are the days that we are usually home and I can get a lot accomplished around the house if I don't let the computer etc. distract me. <br />
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This day marked the four year anniversary of Nicole's diagnosis. Nicole didn't mention it at all but I know she didn't forget. It is a very difficult day for all of us. It is sad to say but it is getting harder and harder to remember "our normal life" prior to that. <br />
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Normally on Thursday Nicole would go to rehab at the hospital but after a site change she can't go for about a week to ten days. I was spending a lot of time this week working on my speech I would be giving tonight at our PH support group meeting on how I keep Nicole's medical records/issues organized. I also had to get all the stuff together for the meeting. I was taking a whole bunch of 1 " binders and spiral notebooks that I had accumulated, hopefully, for people to take home. I was so grateful that a person who comes with one our members works at a school and took what was left behind to give out to the students that didn't have binders. I am going to give her some more also as I have a ton of them. Nicole wasn't able to go to the meeting as she was in too much pain and was more comfortable at home. <br />
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Friday started with me calling Accredo, the speciality pharmacy to re-order two of Nicole's PH medication (her Remodulin is one of them) this call always takes about 30 minutes. I always call when I open the last vial of Remodulin and I was going to be doing that on this day. <br />
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I was getting Nicole up when she takes her morning meds at 10:15 for our lunch date with Kathy who was coming by at 11:00 a.m. Nicole was going to tough it out and go because she wanted to see Kathy and she wanted to go to Olive Garden which is her favorite restaurant. <br />
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We had a wonderful lunch. My father-in-law had given Nicole this cane called the hurry cane which has like a claw on the bottom to keep it from falling over and giving the person more stability. Since Nicole's infusion site is in her thigh she will limp pretty good (until her pain is gone) and putting her weight on her leg makes it hurt. She used the cane for the first time and did a wonderful job with it. <br />
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It breaks my heart because I know how much she hates it when she knows people are staring at her. She is walking with a cane in her left hand and pulling her oxygen concentrator with her right. I know she sees the looks of people. I don't understand why it is no big deal to see an older person walking with a cane on oxygen. I guess because it isn't normal to see a young person or child like this people have to stare. I have been very close a couple of times of asking somebody if they had something they wanted to ask about my daughter because they kept staring at her but I refrained myself so I wouldn't embarrass Nicole. <br />
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Nicole enjoyed her lunch even though she was in pain and had to take a pain pill while we were at the restaurant. She didn't eat much of her lunch because she filled up on soup and breadsticks. That's okay we came home with another meal of left overs :). <br />
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Weekends are not very structured. I go shopping at Target and Publix and sometimes I will hit Staples as they are all together in the same plaza. I always enjoy spending this time with my mother-in-law. We have gone shopping on Saturday mornings since 1995 so she could spend some time with Nicole who came with me until she was about 12 years old or so. I really don't do much housework on weekends either. <br />
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On Saturday nights I go out to Denny's (usually) with my bff, Margaret, and hang out for a couple hours. We usually go to Aldi or the dollar store across the street from Denny's. This is always something that I look forward to so much and is a great stress reliever. <br />
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Today is Sunday and I spend time planning out my week of what I want to accomplish as far as organizing, decluttering and personal accomplishments as well as what appointments and other commitments do we have this week. Rick and I went to Home Depot to get some potting soil and I found a peppermint plant .... woohoo... I also went into Staples looking for the annual monthly/weekly calendar refill for the Arc planner but they didn't have it. I did get a couple of the uni-ball pink signa gel pens... I love them and they are only 50 cents. <br />
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I made a great dinner of white chili and cornbread. I filled Nicole's medications for the week in her daily pill boxes and I also filled her vitamins in her weekly pill box. I was mad at myself that I didn't have enough Zyrtec for the week and I had thought I had another bottle. I usually make a point to buy another bottle of something when I open the last one but it slipped through the cracks. I will have to stop by Walgreens on Tuesday after Nicole's counseling appointment and get some Zyrtec. I also am low on some of her vitamins which I will have to get either at Publix (if on sale) or Target. I really would like to get a better system for keeping track of refilling her medications and her vitamins. <br />
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I asked Nicole tonight at dinner if she was excited to be starting school tomorrow and she said yes. I will have to call the local art store tomorrow and see if they have the items that I am looking for and if so, have Rick pick them up on his way home from work as he goes right past it.<br />
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I am hoping and praying for a good week that is sickness free for all of us but especially for Nicole. Last night some kid was standing up in the booth and started coughing right behind me. Obviously, his mother hasn't taught him to cover his mouth. I worry so much and am so paranoid especially this time of year. Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-78458999724208566172014-01-22T04:28:00.001-08:002014-03-21T15:26:46.177-07:00January 22, 2010 <br />
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This post is part of the #Blog4Care blog carnival being hosted by <a href="http://www.caringacross.org/"><span class="">Caring Across Generations</span></a>.
We're hoping that by sharing our caregiving stories, we can begin to
come up with solutions to the care crisis that is affecting millions of
Americans.<br />
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Four years ago today we took Nicole to a cardiologist due to low oxygen saturation levels. I never, ever thought that we would hear that she had been born with a major heart defect. We were told that she had a large (2.8 cm) hole (along with several other smaller ones) in the lower chamber of the heart this is called a ventricular septal defect (VSD). She also had a patent foramen ovale (PFO) that is like a intermittent flap in the atrium (top part of the heart). Sometimes it is also called an atrial septal defect (ASD). Due to the lack of diagnosis of these two heart defects she developed Eisenmenger's syndrome (reverse shunting of the heart) and severe pulmonary hypertension. <br />
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I remember sitting in the office like it was yesterday after being told all of this. It is like being kicked in the chest and you can't get any air. We had believed that Nicole was healthy up to this point even though she was always sick, didn't gain weight, had anxiety issues, etc. etc. It was also a blow to the future... everything you want for your child evaporated that day. I don't think it was this initial visit but it was shortly after anyway that we were told she would never be able to get pregnant and have a child of her own. She would also need at least a lung transplant with her heart issues being up in the air as to repair/transplant. <br />
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I remember coming home and googling pulmonary hypertension.... bad mistake... what I found literally scared the shit out of me (excuse my language) and I literally had nightmares. It was six months before I would find PHA (Pulmonary Hypertension Association). <br />
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It would be a lie to say that this has been an easy journey. For the first two years at least I would wake up every morning thinking this was all a nightmare until I realized it wasn't a nightmare with the humming of the oxygen concentrator. Now I just wake up and ask what day is it today and what do we have to do. <br />
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If you are a caregiver, you know the stress that comes with this. If you are a caregiver and a parent to a chronically ill child that is also incurable I think that adds a little bit more stress. I have constant worry about Nicole. If I go shopping etc. and leave her home alone I worry about her and pray that she is okay. I worry about her future and that she will mentally, physically, and emotionally be able to come to terms with this as best as she can. Every morning as soon as I get up I peak into her room and watch her to make sure she is still breathing. I have tried very hard the past few months to not do this but even as I sit here writing this the urge to go check on her is so strong and it probably would cause me a lot less anxiety if I just went and checked on her. The worry never, ever stops with this disease that can take a turn for the worse at any moment. This time of year is worst because of flu season. I was out having coffee with my friend the other night and one of the waiters went past our table and said hi and grabbed my hand and I immediately used hand sanitizer. Even though Nicole and I both have had our flu shots if Nicole was to get the flu she would have an immediate pass to the hospital and quite frankly any type of respiratory infection could be deadly for her. I pray everyday that she won't be running a fever etc. <br />
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I'm not sure if I will ever fully come to terms with this. This isn't where I saw my life or Nicole's life four years ago. I have come to terms with the fact that she was born with a congenital heart defect as it is the number one birth defect which, unfortunately, I didn't know in 1994. I blame myself in a lot of ways because I didn't listen to my gut and my instinct and just "trusted" the doctors who all said she was perfectly healthy. How do you come to terms with your daughter's whole life being a lie so to speak?<br />
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I have come a long way with the anger and negative emotions I have toward the pediatrician that Nicole had until she was four years old and the doctor who read her EKG wrong when she was six and even the pulmonologist that misdiagnosed her with asthma at seven years old. Will I ever truly get passed it... I don't think so... I do the best that I can though because no matter how much I fight it and try to rationalize it the facts will not change. Nicole fights everyday just to breathe and I find everyday for awareness of a disease that has taken so many lives that people have never heard of just like I had never heard of it. <br />
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Even though the last four years have been hard and this is just from my perspective and I know it is much, much harder for Nicole to actually have to live it. There have been many, many blessings along the way. We have met some awesome people and have made some awesome friends that we would never have had the chance to meet if it wasn't for Nicole's illness. I truly believe that God gave Nicole her gift as an artist to compensate for her not being able to run and play and jump like other children. We have also had to learn along the way who are true friends really are because when you have a crisis of any kind people tend to scatter. <br />
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I have learned that I can hopefully use my big mouth for good and to help others with this disease or to raise awareness for pulmonary hypertension, for congenital heart defects and having newborns tested for them, and for the importance of organ donation and to be an advocate for Nicole. <br />
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I will always speak out to raise awareness for PH as well as other rare diseases that don't get any recognition. I will always, always be here for Nicole as long as there is breath in my body and I will always speak on her behalf and be an advocate for her. I will always (or at least do my very, very best) to keep the faith and to have hope that one day there will be a cure for this disease and Nicole will be healthy. I ultimately know that even though the doctor's hold her life in their hands in a lot of ways her fate is up to God and nobody else. God has a great future planned for Nicole whether she struggles everyday with a debilitating lung disease or whether she is healthy. <br />
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I am so proud of the young lady Nicole has become and how she has dealt with these issues for the last four years. She is an inspiration to me everyday and I have learned so many things from her. She is the greatest love of my life. <br />
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My deepest wish (other than a cure) is for Nicole to realize just how special she is ... just how much courage she has... just how strong she is. I wish that she wouldn't allow other people to tell her what they feel is wrong with her and what she doesn't do right through their eyes. She will never truly be happy until she starts living for herself and not through what others think of her. I know as I struggle with this too... that this is a very hard lesson to learn. <br />
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Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com3tag:blogger.com,1999:blog-7774984995378112361.post-58661166252508909662014-01-01T17:23:00.000-08:002014-01-02T12:48:41.611-08:00My Three (Well, Maybe Five) Goals for 2014Happy New Year!<br />
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On January 1st a lot of people make resolutions each year and very few actually follow through with them. I stopped making resolutions years ago. <br />
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I do make goals though and do try to follow through on them. My major goal for 2013 was to get my house decluttered (most specifically my living room which is the dump room as it isn't really used) decluttered. I did not accomplish this goal :( . I am disappointed in myself and don't know how I couldn't get this achieved within twelve months. I did make major strides toward this but I wasn't consistent enough. I didn't realize how much stuff I have accumulated through procrastination and overspending. I learned a lot through many different organizational experts. I have to learn to be brutal when it comes to what I should keep and what I should let go off. <br />
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My goals for 2014 are only through March 1st at this point. I will continue to make goals from March 1st - May 1st in the meantime. I will only choose three things (or try) to focus on. I think this was a problem last year because I had too many goals and they were not specific enough. <br />
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My first goal is to lose 10 lbs. before March 1st. I did weigh myself this morning but I still need to do measurements (yuck....) . The way I will achieve this is:<br />
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* start exercising three days per week and try to be more active through housework and not spend so much time at my desk unless I have a specific purpose other than reading emails and/or facebook. <br />
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* watch my chocolate and sweet intake. This I will need to accomplish by not bringing it into the house and leaving it at the store. For instance, I have a love for Reese's peanut butter cups so I will buy a king size one at the checkout when I grocery shop and eat two on Saturday and two on Sunday. This I am okay with I just can't bring in bags of candy. I can still bring in sweets for Nicole and Rick but it will be those things that I have self-control over and I know what this stuff is.<br />
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* I will also watch my portion control and only go by the serving size. I have cut back a lot on bread (or I had until the holiday season) and want to get back into only having bread once or twice a week at the most.<br />
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* I also want to focus on drinking more water.<br />
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My second goal is getting my living room totally done by March 1st. I broke this down into zones and what their purpose is. For instance, we have two wall bookcases and one is for books the other is for photo boxes, binders, cook books, journals etc. (this is the purpose for it). <br />
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I also have the purpose for the two trunks I have in there and the craft area as well as the foyer off the living room. The only area I didn't do was the fireplace mantel which I will need to find a purpose for but not sure what that is yet. I guess it could just be clean except for some fake flowers or a plant. <br />
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The third goal is something I heard from Ellen Rogin about not making all your goals things to do (lose weight, declutter, jump out of an airplane etc.) but also on emotions so the first word that came to me when I heard her say this was peace so my goal to March 1st is to read at least one book on peace which I have already picked out by Joyce Meyer and write the scriptures on peace in the concordances of several different Bibles (amplied, NIV, KJV etc.).<br />
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The fourth goal ( I know I only said three) is to save enough money prior to March 1st to get a new iPhone. I don't want a contract for my cell phone and Straight Talk is great and much cheaper. Even though I only got the phone last year (2012) for Christmas it is a 3GS and came out in 2009 so I really do need to upgrade. I also would like to save $200 in savings by March 1st. I will also have a consistent habit of keeping track of my spending both for our family and for Nicole (since I am her representative payee of her SSI and am accountable for what she spends). This will include consistently sticking to a budget....<br />
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My fifth goal stems from a free scholarship that I won for a Nutritional Healing Class along with a couple of other classes regarding naturopathic healing. I want to complete this first class by consistently spending at least 30 minutes five days a week working on it. I will need to schedule this into my calendar just like exercising and decluttering. <br />
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I know I should have only listed three goals but these all weigh heavy on my heart. I would like to think that each one is realistic and I will be able to achieve them. <br />
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I know by recording my goals in a specific notebook (which also has a specific home) and writing this blog I will have these goals in front of me and will not forget them or misplace them. <br />
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I would also like to work on being more diligent with keeping up with Nicole's medical notes and paperwork and not let it pile up. I will be happy to make a habit of filing all medical related paperwork at least one day every two weeks (which I will put in my tickler system so I don't forget and it can be planned). I also want to consistently keep updated in Evernote with daily happenings with Nicole's medical issues such as phone calls, appointments etc.<br />
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I have so many things that I want to work on and improve and I want to do them all at once when I know I can't do this and it is unrealistic. <br />
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<br />Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-21999373954455313002013-12-23T05:02:00.000-08:002013-12-23T05:02:01.870-08:00Update ... <div style="background-color: white; border: 0px; color: #555555; font-family: 'Open Sans', sans-serif; font-size: 15px; line-height: 22.3125px; margin-bottom: 1.625em; outline: 0px; padding: 0px; vertical-align: baseline; zoom: 1;">
It has been awhile since I have written on here which one of my goals for 2014 will be to be more consistent with my writings. A lot of things have gone on with Nicole’s care in the last couple of months. Just a brief recap for those who don't know me or are coming here for the first time. I care for my 19 year old daughter, Nicole, she has a laundry list of health issues starting with generalized anxiety disorder, obsessive compulsive disorder, benign hypermobility joint syndrome (which is basically loose joints that cause joint pain), idiopathic thrombocytopenic purpura (ITP) which is a bleeding disorder that is caused by a low platelet count, she also has several holes in her heart which she was born with but went undiagnosed until she was 15 years old which caused Eisenmengers Syndrome (reverses shunting of the heart the blue blood which is oxygen poor is going to her lungs instead of extremities) and pulmonary hypertension (PH) which is high blood pressure in the lungs which causes the arteries in the lungs to close up. The PH is progressive and will eventually lead to a lung/heart transplant.</div>
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Nicole has been a patient at the transplant center near our home for the past year. In Feb., it was determined after many tests that she would need a lung/heart transplant as opposed to a lung/heart repair. Her heart is repairable but not unless it is at the same time as a transplant and it would take to long. Every three months Nicole would be seen and have routine tests to make sure that she isn’t declining.</div>
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At the end of August Nicole went to the transplant center for a three month visit. The doctor didn’t like the results of one of the tests that she took. He thought that maybe her Remodulin (continuous medication that she receives through a catheter in her skin) was the culprit and the dose was too high. This led to a visit with the PH specialist for his opinion and he absolutely did not believe that her dose was too high (if anything, he thought it probably needed to be increased) and didn’t believe that Nicole was declining.</div>
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At the beginning of October Nicole saw her congenital heart defect cardiologist for her six month visit. At this time he stepped down as her doctor (his partner had been the one that diagnosed Nicole in 2010). He sited the reasons as lack of communication from her doctors. Nicole sees a psychiatrist, a hematologist, a rheumatologist, a gynecologist, a PH specialist in addition to the transplant center and the only correspondence he had received between April and October was from the gynecologist. He also does not agree with the recommendation of the transplant center that Nicole needs a lung/heart transplant. He believes she can have a lung transplant with heart repair. I was very upset by this and I let both the PH specialist and the transplant center know this. I had a lengthly phone conversation with the PH specialist and Nicole was seen at the transplant center at the end of October to discuss another cardiologist. The transplant center didn’t want us to find another cardiologist and wanted Nicole to see the cardiologist at their center. Nicole was fine with this. On November 11th we saw the new cardiologist. The appointment didn’t start well when the doctor walked in and asked about a second opinion which I had asked for back in March but we never followed through because Nicole decided she didn’t want to do this. We told the doctor again that Nicole didn’t want to go ahead with a second opinion and she was comfortable with their recommendation. He said that she would probably have to go out of state as they didn’t do heart/lung transplants at the center. Once I picked myself up off the floor, I asked why after a year are we just finding this out? Of course, there was no explanation for this. After this appointment I sent an email to the lung doctor at the transplant center (who we have seen every time we go there) asking him the same question that I asked the cardiologist. I also sent another email to the PH specialist letting him know what was going on. I didn’t hear anything for two weeks from the transplant center until the day before Nicole was suppose to get a test done that they had set up to cancel the test until the doctor could be present. I said in light of the last appointment she wasn’t doing any testing until we had some answers. It was our understanding that they were referring us to another center so Nicole wasn't a patient there anymore. </div>
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The following week right before Thanksgiving we were called with an appointment for Dec 18th to see the doctor at the transplant center. We saw her PH specialist on the 17th and had an idea of the “issues” that the transplant center had so we didn’t go to the appointment totally in the dark. The first thing that didn’t go right was the fact the appointment was at 11:00 and we didn’t see the doctor until 12:45 p.m. The second thing that didn’t go right was he refused to allow me to tape the appointment even though I have asked in the past and he has allowed it. The PH specialist had told me that the transplant center had said we had misinterpreted what the cardiologist had said so my question was “how do you misinterpret we don’t do heart/lung transplants at this center?” Of course, I still didn’t get an answer other than “I understand were you might think that.” He contradicted what the cardiologist said and told us that they did do heart/lung at the center. Another issue was that he wanted to see more of Nicole and less of me. This is fine… but I will not just sit back and let a doctor tell us what to do and do it without knowing why it needs to be done etc. because as I told the doctor… “at the end of the day I was the only one who truly has her best interests at heart.” I also told him that just because I called him on things and questioned things do not take that out on Nicole. The transplant center now wants us to get a second opinion and even if I hadn't asked for one they would have... this was never expressed to us before. The doctor also was uncomfortable with Nicole and didn’t think that she was “emotionally ready for transplant” based on her visits and didn’t believe that she would be compliant with taking her medication and doing the tests required after transplant. Nicole has never given him any reason to believe this. She takes her medication every day and has done all the testing that they have requested. </div>
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There is also the issue of insurance… Nicole has Medicaid because she is on disability and it turns out that the transplant center doesn’t have authorization to do transplants for Medicaid patients something we were never told. The doctor also has a concern about her low platelet count but he had never brought it up before and he has seen her lab work.</div>
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I only wish that I had known about all of this issues prior to now so we could have avoided all of this crap. Back in August, Nicole had questioned him about a right heart cath he wanted her to have to see if she was indeed declining and then to decrease her medication and then three months later have another one. He took this questioning of hers as non-compliance just like us not getting a second opinion. The PH specialist had said that he has told the transplant center in no uncertain terms that it was not an option for Nicole not to be listed and he said “I don’t recall him ever saying this.” The PH specialist also said he had pressed him for things that Nicole could do to make this situation better which I questioned him about to and he refused to give us any concrete examples and kept side-stepping any questions that Rick, Nicole or I had.</div>
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Needless to say, we walked out of there with our heads spinning. The following day I called University of Florida and scheduled an appointment at their transplant center for a consult. I only wish that Nicole could get in before the end of Feb. 2014. I will pray that she stays healthy and stable until this time. I was also very troubled to hear the transplant center say that out of a hundred patients that come to them they will only accept 10 of them for transplants.</div>
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It saddens me that this center has put Nicole and the rest of our family through a year of waiting and believing that they were the ones that were going to give her a new lease on life. They have done nothing but deceive us by not telling us things that we should have been told. I can't help but feel that it is partly my fault as I have questioned a lot of things and have been very vocal about her losing her cardiologist as well as the lack of communication between doctors. It is hard for me to understand how they can believe that Nicole will be non-compliant when they see her every three months for 20 minutes or so nor have they made any attempt to get to know her as the doctor tried to state that he has. </div>
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We have no idea what Nicole's current status at the transplant center is at this time. The nurse was suppose to email me some letters from other centers and I have yet to receive this. I feel bad that Nicole has to go through this because it is all about her .... this is her life and her health that is at stake. </div>
Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-29798280539629926382013-10-24T04:13:00.002-07:002013-10-24T04:13:29.478-07:00Random Thoughts I'm not sure that this will be in any random order as my thoughts are so scattered with all the things happening with Nicole and her illness and also just with life in general.<br />
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The last time Nicole saw her PH specialist he referred us to an adult hematologist to try and get some answers as to why her platelet count is consistently low and also her anemia issues even though she takes iron. The hematologist did diagnosis her with ITP which is Idiopathic Thrombocytopenia Purpura. Basically, this is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. Usually people with this have too few platelets in the blood. There's either chronic or drug-induced... the doctor seems to think that Nicole's is drug-induced, I disagree, and while I am not a doctor, I do know Nicole better than they do. Her platelet count was low at the date of diagnosis prior to medications which I absolutely believe have also contributed. The doctor feels that having a bone marrow biopsy will help them in seeing how her bone marrow functions and whether the problem lies in the production of platelets or whether the problems lies after the bone marrow has spit them out. <br />
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This was a complicated decision to make as to whether to actually put Nicole through this painful test. One she has to be sedated (anxiety mostly) and this is extremely dangerous for a PH patient and secondly I don't want her to go through unnecessary testing and the final reason is one of her doctor's doesn't agree with having this test done.<br />
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Earlier this month, Nicole's cardiologist, who specializes in congenital heart defects and whose office diagnosed her CHD and PH in 2010 stepped down as her doctor for a number of reasons from lack of communication between the doctor's to not agreeing with the treatment plan for transplant etc. This was a very stressful situation. I will do whatever I can to make sure doctors have better communication. There is no reason that if a doctor is cc'd that they are not getting it isn't getting it. As one of Nicole's doctor said they would probably have better communication if they were on facebook and did so. <br />
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There were a lot of issues that needed to be addressed in regards to the bone marrow which didn't get addressed to my satisfaction so the procedure was cancelled at the last minute. It has been rescheduled for next week and while I do feel better I still worry because most doctors do not have a clue about PH and how they are different when it comes to sedation. I know she can have the procedure without sedation but I don't think her anxiety will allow this. She was/is terrified of having this test which shows up for Nicole with major stomach issues. <br />
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After Nicole's doctor stepped down I wrote an email to both her PH doctor and the transplant center basically letting them know of my displeasure over this whole issue. Nicole had an appointment yesterday at the transplant center. I am still trying to process and haven't listened to the recording of the appointment but the jest of it was.... we have to make a decision as to how to proceed. The center has determined that Nicole needs a lung/heart transplant as opposed to a lung/heart repair. If we decide to go to Mayo or University of Florida for a second opinion and they say they can do a lung/heart repair this center will not change their mind. Tampa will not see Nicole because they do not do lung/heart. The question is to we want to travel several hours away to have all the testing done again that she has already gone through to get a second opinion regardless of what that is. We know enough about transplant and the odds of living 10 years after a heart/lung are 35% but the chances that Nicole will be alive in 10 years with her illness now (PH) is less than that. <br />
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My hope with the appointment yesterday was that we would get a recommendation for another pediatric cardiologist (she has to see pediatrics because they specialize in congenital heart defects). I didn't get this. Basically, we were told if we decide to stay with this transplant center and proceed with transplant at the appropriate time that we don't need to replace the cardiologist. I'm not sure I am comfortable with this. The doctor basically said "well the PH specialist is a cardiologist... yes, this is true.... but he has no knowledge of CHD's as this isn't his specialty and he is an adult cardiologist. The transplant doctor said that they have a cardiologist there and he wants us to see him (we haven't before). So basically, the bottom line is we would see the doctor's at the transplant center and the PH specialist and that would be it outside of her rheumatologist, hematologist, ob-gyn, primary, and her psychiatrist. <br />
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I guess at this point we will see the cardiologist and see what he says. I will wait until after this time to really think about this. My main goal for the next week is the bone marrow biopsy which her PH specialist wants her to have. We spoke on the phone at great length about this. I would just feel a lot better if someone was there who was knowledgeable with PH like the doctor or his nurse etc. but since the specialist is at a different hospital than the procedure this won't happen. I have the name of the doctor (who I have never heard of) doing the procedure but I don't know yet who the anesthesiologist is at this point as on Wednesday when the appointment was made the lady who I have dealt with through this whole ordeal didn't have the schedule. I'm sure aneshesiologist doesn't have a clue. I asked if they had knowledge of PH but she said she could only assume that they did... not... this isn't a good thing (to assume). This is the first time in almost four years since Nicole's diagnosis that she will have a procedure that requires sedation (she gets the same sedation every time to my knowledge) that her PH doctor hasn't done it/been present, his nurse hasn't been present, or the same doctor/anesthesiologist hasn't done the procedure. This makes me so nervous and I would feel much, much better if there was a nurse or somebody present who was knowledgeable.<br />
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The stress and anxiety this puts on our family is tremendous when I spend every moment of every day worrying about Nicole and her future as well as our future as a family. It is exhausting with the phone calls, doctor appointments etc. It is exhausting feeling like a total bitch because I have to ask 101 questions for everything and if I forget anything the consequences could be bad. It is exhausting trying to fight a system that clearly doesn't work well when doctors and hospitals can't communicate especially in this day and age with electronic every thing from iPhone's to mini computer's. Does me running my mouth trying to raise awareness about anything pertaining to Nicole and her illness do any good at the end of the day? <br />
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I guess my biggest question/concern is why does a 19 year old young lady have to make such life-changing decisions when she should be out having fun with friends, a boyfriend and looking forward to a future? Instead, she has to make a decision as to whether or not she should have a lung/heart transplant, get a second opinion about that, and all the other decisions that need to be made in context to her health. The future for her is so uncertain and while in reality it is for all of us because none of us know if we have a future or what is in store but for Nicole this hits hard. The decisions that Nicole has to process would be hard for a mature adult let alone a teenager. I will help her and support her with any decisions/issues pertaining to her health and I will be with her every step of the way on this journey no matter what her/our future holds. <br />
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<br />Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com1tag:blogger.com,1999:blog-7774984995378112361.post-90627499826495490242013-09-06T12:10:00.002-07:002013-09-06T12:10:55.576-07:00Emotions...Today is one of those days when a slap in the face from a test or a doctor's appointment can really throw me into a tailspin. <br />
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I am forced to deal with emotions that I don't know how to deal with. I will never forget January 22, 2010 when our life as we knew it changed forever with Nicole's diagnosis. A diagnosis that we should have found out years before we did. <br />
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For the first year and a half after her diagnosis I would wake up every morning believing that I had just had a nightmare and Nicole wasn't really sick with a incurable illness that she will either die from or require a lung/heart transplant for her to be cured of her lung/heart disease but still not have a normal healthy life free of endless doctor's appointments, medications, etc. Every morning the realization hit me that it wasn't a nightmare it was my life and it was Nicole's life. <br />
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It has been a little over three and a half years now since her diagnosis and I don't wake up every morning thinking I had just a bad nightmare. I also check to make sure Nicole is still breathing and then I say a prayer for Nicole for the day that she will have a good day and we will have no major medical issues happen. It is the last thing that I think about before I go to sleep at night with another prayer that she will get through the night without a pump malfunction etc. <br />
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I know that this will sound very negative and I don't mean it as negative as it sounds... our life as been hell with Nicole's illness and other issues that we have faced because of her illness... I know things could be worse and I am truly, truly grateful for that. We have had many blessings also to go along with the hell we have experienced. <br />
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I looked back over the last three years and know that if it wasn't for my faith and by the grace and mercy of God I wouldn't have made it this far. I don't know how I will make it through a future that will see Nicole get sicker or a possible transplant. I know that if God brings me to it He will get me through it ... but will I be stronger for it or will I lose my faith because I can't understand how any of this is working out for the good? I know I am not the only mom who goes through this with sick children I am sure we all do. For me, I don't know how to do this every day and stay positive, not be bitter, resentful, angry at doctors/God/myself etc. I do make sure I journal three positives from the day every night and so far today I only have a great parking spot up front at Walmart. Some days it is so hard to find those three things and maybe it really isn't as hard as I think it is. <br />
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My greatest positive every single day is that I have blessed with Nicole and no amount of hell or hardship will take that away. I am blessed that she is stable for the most part and that things could be so much worse. I am still able to give her a hug and tell her how much I love her. Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-91993580683698302872013-09-04T06:11:00.000-07:002013-09-04T06:11:59.341-07:00Transitions ....I was interviewed via video chat on Google hangouts on Friday, August 30th by Denise Brown at caregiving.com which is a blog site for family caregivers. I have been involved in this community for 2 1/2 years. It has been a godsend for me and I am grateful every single day for Denise and the other friends that I have made through the site. They have helped me more than words can express. <br />
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The interview was about transitions with Nicole and her starting online college classes on Sept. 5th. First, I am grateful that she isn't actually going off to college and I still have her living with us so that is a little better. I didn't think that I would have this emptiness when my homeschooling duties were over I thought I would only have relief but two months into what would be our school year I realize that I really do miss it and wonder how do I fill this gap. <br />
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Life for Nicole and our family is different for a family with a healthy child who is going to college. There are a lot of other responsibilities. I am responsible for Nicole's medical issues as her power of attorney because she is 18 and considered an adult so in order for her not to have all those burdens Nicole had to give me this authority. I am also responsible for her financial matters and her representative payee for her disability checks which I have to be accountable for. I think of myself as Nicole secretary or administrative assistant. I know what she expects from me and I try very hard to respect those boundaries. I do not ask her (or try not too... this is a work in progress) if she needs help with something... if she does... she must ask for it. I know this is hard for her because she doesn't want to depend on me and have to ask others to help her. <br />
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I always feel the need that I must explain myself as to why I am so overprotective of Nicole even though she will be 19 in less than three weeks (wow... where does the time go?) It is hard for people to understand if they don't have experience with this situation. How much should I still push Nicole? I ask this question with college... she had orientation last week and I was so proud that she had finished it and scheduled a conference call with one of her instructors (she's taking two classes). I didn't know she had scheduled this until the phone rang and I saw Nicole on the phone. I mouthed to her to let the instructor know about her medical issues. She didn't need to go into detail only that it had a potential to influence her schoolwork. After the call I asked her if she told the teacher and she said "no" because the call was being recorded for the other students. She said she would PM the teacher. This was last Thursday. I asked her last night if she had done this and she said "no". She also has an assignment that is due prior to tomorrow.... she either had to make her weekly schedule or take a picture of her desk/work space. She didn't want to do her weekly schedule, this would allow her classmates to know she is ill. I don't understand why she feels compelled to keep this a secret or is ashamed of this but I have to respect this. She also thinks her life is boring. She decided that she was going to take a picture of her desk area. The problem is her desk was a mess. She asked me to help her get it organized which of course I said I would do. I make her take everything off her desk but her computer. I have asked her numerous times what she needs on her desk and she says she doesn't know. I am a little upset that she asks me to help her but when I do try she blows me off... I guess this is my problem... As of last night she still hasn't completed this assignment. The way her classes work is she has a module to complete in each class every week which runs from Monday to Sunday. The modules consist of reading, an assignment of some type and then a discussion. I need to find a balance of not hovering but still knowing that she is getting the work done without her getting behind or overwhelmed. I thought this morning as I was thinking about this blog that I would touch base with her on Friday's to see what her assignment was and if she has completed what needed to be done. If not, I have Saturday to make sure she gets it done. The rest of the time I will need to step back unless she comes to me. This will be very hard for me to do. <br />
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Ever since Nicole graduated I feel like I am just floated a long with no place to go so to speak. I have devoted so much time to Nicole's schooling and her medical issues that I haven't had much time to focus on myself and what I want for myself. I know even with Nicole's illness that within a few years she will want to be on her own and move on with her life. I need to have something that fulfills me. Yes, I have goals like to declutter and organize my house which I have been working on. I would also like to shed some pounds and get into a healthier lifestyle. I would like to continue to learn about pharmacology and at some point get certified as a pharmacy tech but I don't think that I can work outside of the home and still focus on Nicole's medical issues at this point in time. I do try to save money where ever possible and make a few bucks here and there when the opportunity arises. I would love to find something from home for a more consistent income. I want to continue to learn and grow into the person I know I can be. I have been very interested in herbs and herbal/homeopathic medicine for quite a few years and would like to learn more about this and how it applies to keeping Rick and I healthier. I would also like to learn how nutrition can be a benefit to Nicole and her health. I would also like to takes some self-help classes that pertain to organization/decluttering. I still don't feel like I have a clear picture of this though. I would also like to improve my relationship with God and really learn to trust him with Nicole and her health issues and trust that whatever happens that it is for the best. I can't spend my days wondering why she has had to go through what she has and why we had to wait so long for a diagnosis. I want to be more true to myself... be more like Jesus and love others more than I do... be a light and inspiration for Nicole, Rick and the rest of my family and just forget about what others think. I want to be at peace within myself when it comes to Nicole's health and the journey that we are on with this even though this isn't the life I had hoped for Nicole or our family. I want to help others who live with the disease or any other illness that impacts a persons life. I also want to be support for other caregivers. I feel like this is too much to want and how do I go about getting this all. It is overwhelming to me sometimes as I have to remember one step at a time....<br />
<br />Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-37717848518496610042013-08-28T13:03:00.000-07:002013-08-28T13:03:14.028-07:00Transplant Appointment .... Today, Nicole had an appointment at the transplant center. I am always a little nervous to go to any doctor's appointment whether it is the cardiologist, PH specialist or the transplant center as they could rock our world by telling us that Nicole's disease has progressed or that she is in congestive heart failure. None of these I want to hear. <br />
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I tend to get complacent when things are going on an even keel. She has had a very good site this time and today is day 32 even though she will probably have one to welcome the long Labor weekend and the start of college classes for her which really sucks especially since her birthday is three weeks from Labor Day. Sometimes I don't keep a detailed record of things like I should. This is where I help Nicole the most is in the note keeping and the organization of records and making the calls and appointments and keeping track of them. I get complacent not in the thinking that she isn't ill anymore but in the thinking that it isn't that bad. It really does take a doctor's appointment that I think is going to be nothing but routine to slap me back into reality... the reality that Nicole has a life-threatening illness that as of this date has no cure. <br />
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We got to the appointment and they were out of decaf coffee... that should have been my first clue that things weren't going to go as I expected :). They did the usual things, weight, height, how are you, what have you been up to, when does school start, go through her list of medications. They switched her over from her portable oxygen to their tanks and took her vitals. The social worker came by and stuck her head in. She is pregnant with her first child so we said congratulations. Another nurse, stuck her head in and said get Nicole ready for the SHAPE test. She had this the last time she was at the transplant center. It is not Nicole's favorite test. Basically, she is hooked up to a heart monitor and has a pulse ox on her finger. They take her off the oxygen and clip her nose and then have her put a tube in her mouth that basically catches her saliva and spit. She then has to step up and down on this step for five minutes while the computer records her vitals. Her oxygen saturation levels dropped to 60 and I know her heart rate got at least 130 but I don't know how high it went. The doctor kept coming in and out while she was doing this. At one point she was asked if she could go faster and she shook her head no. The nurse finally told her to stop at about 4 mins. and 30 secs. which was longer than she went last time before the doctor made her stop. I thought she did very well except her breathing was very heavy and I could tell she was struggling. They gave her back her oxygen and she sat down. They unhooked her and we went back into the exam room. <br />
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The doctor came in a few minutes later and said this test was much worse than her last one which I believe was in May. I was surprised. He said that he was going to tell us that he didn't need to see her so often as she was doing so well but he couldn't do that now because of the results of the SHAPE test. He wants her to do another 6MW, hopefully tomorrow, at rehab to compare that with the last one. It sounds to me like he wasn't happy that her heart seems to be working harder. He is not sure if she is declining or if her dose of Remodulin is too high. I remember her PH doctor saying that they had to really be careful because if the dosage was too high it could do more harm than good. The transplant doctor said the same thing today. They may have to back her down. He also mentioned another heart cath. Nicole usually doesn't talk much at appointments but at this point she did. She doesn't want to go through another heart cath unless it is absolutely necessary (I don't blame her). He called her PH doctor while we were there but left the room so I don't know what was said only that the doctor would be contacting us. <br />
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During Nicole's last heart cath in January she had an allergic reaction to something they gave her in the cath lab. The doctor who does her heart caths always makes her spend the night in the hospital. When we were allowed to see her I noticed a red line that went from her IV up her arm. I questioned the nurse and she said it was much better than it was and she had two doctor's look at it and they didn't seem concerned enough to give her anything. The next day she had a rash on both arms and Nicole's cardiology nurse said that this meant it was systemic and that it could be worse next time causing her to go into shock. I don't want her having a heart cath until this is addressed either by figuring out what she has an allergy too or a plan to combat any reaction either with Benedryl, EPI pen etc. <br />
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So right now the plan is to get the 6MW which the doctor will compare to the last one. At that point, he will make a decision how he wants to proceed. I suspect that she will see the PH doctor soon to discuss lowering her dosage of Remodulin. <br />
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This really freaks me out... I don't usually think too much about how sick Nicole really is as I would be a basket case all the time. I am not ready to deal with a transplant yet and I know the doctor wanted to prolong it as long as possible also. I can deal with the stability she has now even though we have rehab, medication, and everything Nicole goes through in her daily life with side effects, fatigue etc., but if I think about how sick she could be and will have to be before, during and potentially after transplant I can't deal with this. I know if God brings me to this He will get me through this but I'm still not ready. <br />
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I always hate these appointments as they always send me into a tail spin and I can tend to feel sorry for myself and for Nicole and her life and why does she have to go through this.... why does God allow her to go through this when He could heal her... you know how that is... I will also shut down and not want to focus on things that I should... heck, I do that now. If I spent as much time cleaning and decluttering my house as I do on facebook, checking email, any other distraction my house would be clean and decluttered and I would have time to do this that interest me without guilt etc. I envy Nicole because at least she deals with her emotions where as I tend to use distractions of any kind to keep from dealing with them because I can't. This is why I hate it when people tell me I'm so strong because I'm really not....I don't want my daughter to be chronically ill, I don't want my daughter to die and I want a normal life without doctors, hospitals, medications, side effects, pain, emotion, anxiety etc. I don't want Nicole to be ruled by the oxygen concentrator, by not being able to just get up and go do something fun without any planning or preparation. I want her to be a normal teenager but it comes down to the simple fact is she isn't because of her illness. Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com2tag:blogger.com,1999:blog-7774984995378112361.post-48475398430719244702013-08-21T05:05:00.000-07:002013-08-21T05:05:10.227-07:00Random thoughts.... This is just a update so to speak. I took Nicole to the psychiatrist on Monday because of her emotional issues last week with things she said that were of a concern as well as her sadness that she has had for months. My whole purpose for this appointment was to have the doctor increase her dose of anxiety medication. He did do so and also added a diagnosis of ADHD. As of yesterday, she started the new dosage. It will probably take about two weeks for the medicine to kick in. He also made sure to tell her that the medication alone wouldn't make her happier she also had to be more positive and change her mindset. <br />
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Yesterday, she saw the counselor. Sometimes Nicole talks to Pat herself and sometimes it is both of us. She didn't want me to leave yesterday. I explained what has happened the last week. It never ceases to amaze me what I have learned from Nicole and continue to learn from Nicole about myself. One of Nicole's issues is her trying to use other people to make her happy and feel valuable and worthy. She is very attached to Shayne, more so than she should be, and she is happy/sad based on what is going on in their relationship. She is like this with her other friends but she is closest to Shayne so it is more prominent with him or me. I don't know when she became so afraid of being alone and being by herself when all her friends are at work. I know it is difficult for her to come to terms with the fact that her friends are all starting to enter the workforce and this is something she can't do. If I had to really pinpoint the start of her sadness/depression I would say it was right after she was told when the time comes for transplant she will need a lung/heart. I know she has read about the surgery and she knows the odds and risks of the surgery as well as the rarity of it. How could you not be terrified. I am terrified and have not come to terms with it by any means. My friend, Denise, has told me for a long time that every night I should write down three positives things that I am grateful for in my day. I had kept a gratitude journal for years but I had gotten out of the habit of it and I could tell. I decided that every night when I ask Nicole her daily questions about her day, her side effects, medication issues etc. she would give me three positives in which I write down in a little notebook. Last night every positive she gave me was followed by turning it into something negative for example one positive was Shayne had the day off from work which is a positive but she took it over to the negative when she went farther and said yea... but we aren't doing anything... isn't just him being there with you on skype (via microphone) enough... I guess she feels they have to be doing something in order for her to believe that he wants to spend time with her etc. Tonight she needs to give me three positives and that is it with no further negativity. It also troubled me as I have battled this demon myself that nothing ... no matter what it was ... is good enough... always thinking that there's something better. <br />
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I had asked her to write down all the positive attributes about herself. I told her it should be on my desk this morning. It was and I was very sad to see that there were only eight things on the list. These included a good artist; a good imagination; she's pretty; beautiful eyes; she was strong; she likes the two little moles on her face; she loves her friends, pets and family a lot; she's creative. I immediately within 5 minutes was able to write down these other things: loyalty; intelligence; a caring heart; a love for children; a love for animals; beautiful smile; beautiful hair; thin; good photographer; brave; a good writer; kind; not materialistic; good student. Tonight I am going to have her write down the negative things she sees in herself and if I had to bet it will probably be twice as long. I think the number one answer will be selfishness. <br />
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I learned yesterday that I have this same type of attachment in a lot of ways with Nicole as she does with Shayne. I was never one of those moms (and if you are I'm not criticizing or judging) who couldn't wait for the first day of school. I hated the school year because I had the whole day without Nicole. This applied if she was going somewhere .... what would I do without her. Now, she is 18 and she doesn't need me like she did when she was younger and soon she will want to be married etc. I sometimes don't know how to be happy without her with me. I have been thinking a lot about something my mom said to me, I believe it was the day she was diagnosed with terminal lung cancer and she was refusing treatment... she said "you don't need me anymore" ... I lived in Florida she lived in New York. I couldn't understand how she could say that ... I would always need her... now I understand more what she means. <br />
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I hope that I will see that beautiful smile and hear that beautiful laugh come back soon. She doesn't realize how much, even though I have tried to tell her, she has influenced me and a lot of other people. She has inspired me in so many ways. She has made me a better person. She is what I am most grateful for every single day. That God has blessed me with another day with her even through all the sickness, depression and pain it doesn't even come close to a life without her in it. <br />
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<br />Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com1tag:blogger.com,1999:blog-7774984995378112361.post-2635167126945079722013-08-19T04:10:00.000-07:002013-08-19T04:10:54.838-07:00Is There Such A Thing As Normal? I came across a little harsh last night in my stauts on Facebook.... I absolutely agree with what I said though. I want people to look past her illness, the oxygen in her nose, the sadness she has, etc. and see her heart something that this society doesn't do. I want her to be treated as normal but at the same time she isn't normal and she does have some hefty limitations and baggage. Find a way to show compassion and support. <br /><br /> This is the issue with Nicole... someone (I will use myself as an example) can make a statement to her and she will interpret what I said... for example, I say to her " I am happy today and you are sad and I am not going to allow you to make me sad so when you want to be happy let me know and we can hang out. " Now, for one... nobody can or should be able to make you feel sad/happy etc. unless you allow them too (unfortunately, Nicole hasn't learned how to do this). This is what Nicole hears from this... "you are a downer and I don't want to be with you unless you are happy." She feels like I am putting conditions on whether or not I want to spend time with her. I'm not saying it is a totally wrong interpretation. When Nicole talks to me I have to clarify is this actually what the person said or what you think they said? If it is in the form of a message (text, skype, IM etc) I will have her show it to me. I have to try to help her take only the words that was said and not what she interprets them to mean. <br /><br />Nicole had a very emotional week last week. On Friday, because of her sadness and depression I called her psychiatrist and scheduled another appointment for her to see him today. Nicole has been on the same dose of her anxiety/depression medication since she was 10. Earlier this year her dosage was increased because of depression which I believe stems from being told that she needs a heart/lung transplant but at this point you are too stable and we can't list you. I know she said she assumed that she would need the lung/heart but still when you actually hear it and it's a reality it's different. I also feel that she doesn't feel like she is good enough to have a serious relationship with a guy, to eventually get married, etc. Why would some guy want a relationship with her when they can have a relationship with a healthy girl who can do all the things that she can't. She is at that age where these thoughts come into play. On July 3rd she saw her psychiatrist and once again I asked for an increase in her medication because of anxiety and her depression. I do know that based on her weight her dosage could still be doubled. Nicole takes (on a daily basis) 16 pills each day and that doesn't include vitamins. She also takes other meds like Immodium AD on almost a daily basis for diarrhea which is a side effect of the Remodulin. She also takes narcotics with every site change as well as nausea medication which is also a side effect. I fill her weekly pill containers on Sunday evenings. It occurred to me that I could have not given her enough anxiety meds. She was taking a pill and a half every day but when she was at the doctor last he upped it and so she was going to switch to just one pill because of the higher dose. He electronically submitted the script and Medicaid will allow for the immediate filling of a script if the dosage is different. I picked up the script a few days later and started using this. Last week and I believe the week before I was using the old prescription and just giving her two pills. It occurred to me last night that I couldn't remember if I gave her two pills or not last week. If I didn't this would explain Nicole's behavior. I know I gave her two pills this week. I asked Nicole if she paid attention and she said no. I would feel horrible if my mistake was the reason for this emotion. When I filled her weekly vitamin container I wrote with a sharpie on the top how many pills she takes daily for instance she takes two Vitamin D's so I wrote 2 pills. I will do this same thing with her prescription meds. <br /><br />I will also need to call the gynecologist again as Nicole is still having female issues and the doubling of the hormone hasn't stopped the problem. She was actually having cramps over the weekend. She sees the doctor in the middle of September. They are going to have to call in another script for 2 pills every day so Medicaid will fill the script because I will run out two weeks prior to being able to fill it. This would mean I will have to pay $65 for a month supply of it which I realize in the context of some of her other meds is cheap. <br /><br />She will see her counselor tomorrow after rehab. I hope that this will help her. She has to find a way to find happiness within herself and not rely on others to make her feel this way. She has to find value and purpose (which she doesn't have) within herself and to know that she is normal but just was given a disease that she did nothing to deserve. I know how hard this is. She doesn't understand why she's sad and if she could just figure that out then she could do something about it. If I have too I will take her to the counselor every week but this another expense I have to pay out of my pocket because as her counselor says "she doesn't have the right letters behind her name so Medicaid doesn't acknowledge her. I really don't mind paying if this is what Nicole needs though. She is currently seeing her every other week which I increased a few months ago from once a month. <br /><br />I want Nicole to see how beautiful, smart and talented she is. She thinks everything she feels/thinks isn't normal when I tell her all the time it is. She has the most beautiful heart and I always say she has more loyalty that a dog. <br />Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-21083033972622091482013-08-18T07:38:00.000-07:002013-08-18T07:38:47.215-07:00Learning Something New About Myself.... I believe in 2009 around the time of my carcinoma in-situ diagnosis God put into my heart to "get my house in order". I'm sure a lot of us will feel like we are being called to do something and ignore that .... I know I did and still do. It has been four years and I still do not "have my house in order". My number one goal for 2013 was to clean out the clutter and get my house organized. I have done bootcamps, organizing calls, watched organizing video's ... you name it to try to figure out how to accomplish this... I realized that it doesn't matter how much I listen to or watch if I don't do the steps then it will not get done and there's no housecleaning fairy that comes in and cleans out the clutter every night while I sleep... I really do wish there was. My issue is making decisions on what to do with stuff. I have made decisions pertaining to Nicole and her illness without a problem or any other decisions I need to but when it comes to whether I should keep, trash, or give away I have a problem. <br />
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The most important thing for me to get organized was all of Nicole's medical records and paperwork which for the most part was in a wicker trunk. Starting in January every morning for 30 mins. right after I watched Joyce Meyer I would go through the trunk and organize the paperwork that eventually made it in binders. I have about 20 binders that range from hospital records, labwork, SSI, insurance, prescriptions, and then one for every current doctor she has and then one binder for all her past doctor's. This project took me roughly 6 weeks or so. I have continued to work 30 minutes every morning on keeping all of Nicole's medical documents, etc. organized... there's always work to be done. That wicker trunk is now used to store yarn for crocheting. <br />
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The worst rooms in my house are the spare room and the living room which we really don't use on a regular basis. I believe in May or June I converted the spare room to my "home office" with my desk etc. and let Nicole take over the computer/homeschool room so she could have more privacy and more space to get organization for her art supplies etc. <br />
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I started on a daily basis trying to spend 30 minutes in the living room doing some type of decluttering and I am amazed at the amount of things I have given to my friend, Margaret, for her yard sale, goodwill and thrown away and I look at all I still have and can't understand how I accumulated so much stuff. I'm not where I want to be in here but it's looking better that it has in the past. I am still embarrassed to have people come over though and see it. <br />
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I realized though that my first priority must be the spare room as this is where all the medical binders are, the file cabinets and all the paper that comes in to our house and this is where I waste the most time looking for things. I try to spend 60 minutes on Mon., Wed., and Fri. decluttering. On Wednesday of this week I started concentrating in here. I had converted the closet into shelves several years ago so I was able to clean them all off and have a purpose for each shelf. It is too hard for me to squeeze in this time on Tues. and Thurs. when Nicole is at pulmonary rehab or has doctor's appointments so I double up on the other days. <br />
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Last week I went through all my cross-stitch and latch hook projects that I have that were in the living room. I haven't worked on them in a long while but I am not ready to give them up so I decided to put them in drawer organizers. I had a couple already around the house that I could use and then bought another one yesterday when they were on sale at Target. It looks a lot better in that area now. All that's left is to label the drawers. I also have all of Nicole's homeschool schoolwork that needs to be organized/thrown away and anything that I don't need in the spare room/home office finds a home out there temporarily. <br />
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I have the a pretty good collection of photo boxes that you can get at Michael's that I accumulated over the years. I had a bunch of these on the bookcase in the dinning room that had pens, highlighters, pencils, and post it notes in them. I knew I had some clear containers and decided this morning to transfer them into clear containers.... this is where I learned something about myself... I need to store stuff in clear containers so I know what I have. I have enough of pens, pencils, and highlighters to last me for years and years. I don't have as many post it notes as I thought which was a surprise to me but I have another little decorative box as well as a desk drawer or two with more so all together I probably have a good collection. <br />
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I hope that I will repurpose these boxes and use them for other things like keepsakes, pictures etc. and store on the bookcase in the living room at some point. <br />
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I feel so good about myself and my goal of cleaning out the clutter when I get some area even if it's my dining room table cleaned and organized but I get frustrated at the same time because I have a hard time realizing and visualizing that at some point it will be done .... even though that can' t come soon enough. <br />
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As Joyce Meyer always says "I'm not where I need to be ... but I'm not where I use to be." I need to focus more on how far I have come and not how far I still have to go. <br />
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<br />Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-60063491376583499632013-07-24T06:52:00.000-07:002013-07-24T06:52:53.897-07:00A Character Sketch... I have been going through Nicole's old schoolwork as I had a huge hope chest full of all her books, papers etc. from 6th grade on. I only need to keep from 10th on in case the county comes back and questions me.<br />
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I found this character sketch she did for an assignment in 10th grade English. This character sketch is of me and this is what she wrote:<br />
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Jane Northrop is an awesome person.<br />
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She has shoulder-length dark brown hair that is usually in a ponytail.<br />
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She wears neutral-colored makeup and carries a big purse whenever she goes out. She has dark brown eyes and wears glasses for her nearsightedness. Her typical outfit is either jeans or capris and a t-shirt. She usually wears sneakers even when she is doing things around the house. She usually wears a cross necklace and a bracelet and earrings. She is usually wearing something that spreads awareness about pulmonary hypertension whether it is a t-shirt, bracelet or button.<br />
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She tends to complain about her situations a lot. She tends to be a bit impatient but not more than an average person is.<br />
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She has a melancholic type personality. Generally, she reacts to change somewhat badly, not liking it at all, but she is very strong and takes the change head on. However, she is usually stressed out about something whether it's because of what she has to do or because of other people. She usually has a bit of a negative attitude, but she tries her hardest to have a positive attitude.<br />
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She tends to judge others easily, especially when she feels they have wronged her. She tends to get upset at others, especially when they did something she feels they shouldn't have done.<br />
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Everybody believe s that she is a very kind person with a very godly heart. They also think she's organized and very strong emotionally.<br />
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She is typically at home with me, stressing out about what she has to do. She procrastinates a lot, though, and is usually found on the computer checking Facebook.<br />
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She tends to agree to do a lot of things, and that causes her to stress. She is a very devoted Christian and spends time every day on several devotions. She is also very devoted to helping me with my medical illness. She is very loyal to her family and friends and will try and help them if they need. She is an organized person, even though she doesn't see it because she can never find anything. <br />
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I'm not sure if this is the end of it or I'm just missing the second page.... Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com0tag:blogger.com,1999:blog-7774984995378112361.post-81633335960851663282013-07-17T05:01:00.000-07:002013-07-17T05:01:05.187-07:00Venting.... This is just going to be a rant because of frustration and not knowing what to do about it. <br />
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I absolutely LOVE Nicole's PH doctor. When she sees him he makes her feel like she is his only patient. The problem I have is all the other times I have to deal with his office. <br />
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The transplant center requested a new echo back in May and since Nicole was seeing the PH doc the following week I thought this would be easy to get it done at his office. Well, you know what they say about the best laid plans.... he decided that he wanted it done at the hospital (not the same hospital as the transplant center is through) because there machine was better. We finally got it scheduled for June 20th. I still don't know the results of the echo nor has the transplant center gotten a copy of it. I emailed the PH nurse the first time on July 2nd. She responded on July 9th as she had been on vacation. She told the doctor that I had requested the results. Test results should be reviewed with the patient before the reports are released (I'm not sure if this is his policy or she was saying this). She said the doctor wanted a phone conference with me and asked when would be a good time between the 9th and 12th. I said either early Friday morning prior to 9:00 a.m. or anytime after 4:00 p.m. On the 10th I told her Nicole had her metabolic panel bloodwork done on July 2nd and wanted a copy of that. She did reply to this that the doctor would call on the 12th at 6:00 p.m. Never addressed the blood work. The doctor never called me for whatever reason. <br />
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I got a call from the transplant center on Monday asking if I had the results of the echo. I sent an email to the transplant nurse that I didn't have the results and that they may have better luck getting them then I have. I also said that in the future whenever Nicole needs an echo I will have it done through her cardiologist. They will get it to the transplant center and to me in a timely manner. This problem taken care of. <br />
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Nicole has monthly blood work for a complete blood count (this lets us see her red blood count as well as her platelet count which is always low) as well as a liver function test as one of her medications can cause liver damage, a pregnancy test (regardless of sexual activity) as this same medication that can harm the liver will cause serious birth defects so can't be taken if there's a chance of pregnancy, a metabolic panel which among other things checks the potassium (this is usually low for Nicole) and a magnesium count. She has a standing order through the PH doctor for the metabolic panel and magnesium testing and the CBC, liver, and pregnancy is through the cardiologist. The hospital faxes the results to each doctor that requested it. I emailed the cardiology nurse asking if the doctor would write a script for all of the standing orders together and he would get the results because I know I will get them in a timely manner. I am waiting to receive this script in the mail. This problem taken care of. <br />
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The last issue that I have and this is where I am frustrated as how to handle this. Nicole is on subcutaneous Remodulin which means that she has a tiny little catheter in her skin that is attached to an infusion pump that delivers the medication. On average every five weeks the catheter needs to be taken out and a new catheter put in at a different location (abdomen, thigh, arm, buttocks). When she initially puts in the site she has extreme pain for about 10 days during which time she has to take Hydrocodone. <br />
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Nicole had a site change on June 26th in the hopes it wouldn't interfere with her Make-a-Wish. She actually put it in dry on June 24th but that day and overnight it started bleeding so Nicole had to take it out and stick herself again. I'm not sure if she got too close to the old site on her thigh or what but she got this really bad rash that seemed to spread from her old site to her new site. Bottom line was she had discharge and when Nicole went to take off the gauze that covers the catheter it stuck and Nicole had a hard time getting it off without pulling out the catheter. After texting a picture of Nicole's thigh and speaking with the Accredo nurse she said the site was angry and that Nicole would have to change it that day which was July 10th two weeks after the last site change. This same day July 10th I sent an email to the PH nurse that Nicole had to have a site change and that I wasn't sure if she would have enough pain meds to last for this site change and I would like another script. Previous to this, right before this site change I had asked for another script before the doctor went on vacation I never received the script that I requested nor did I receive one the time before when I asked for it but was just ignored. Only the doctor can write a script for narcotics and it must be mailed or picked up and taken to the pharmacy. She said she would have the doctor write it on July 11th and she asked me if I was going to pick it up. I said "no" just get it in the mail to me on Thursday and I will have on Friday and I can fill on Saturday. As of yesterday which was the 16th I still haven't received the script. I ask you... if he puts her on a medication that causes extreme pain where she has to take narcotics than he better make sure that I get the scripts when they are needed and in a timely manner. This isn't the first time I have had problems getting pain meds. <br />
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Initially Nicole was on Tylenol/Codeine which she had some reactions to... nausea and dizziness. When Nicole was in the hospital in January they gave her Hydrocodone and she did much better on it. I asked for a script of it on discharge but didn't get it so when she saw him for follow up ten days later I got a script. The doctor wrote it wrong ... hydrocodone has to be mixed with acetaminophen or ibuprofen and he didn't realize this and just wrote it for straight hydrocodone because you use to be able to get it like this. She had a site change and I went to fill it and couldn't. I was livid and called the doctor's office and talked to one of his NP's and he said that he would get it out to me ASAP... it was put on someone else's desk to get mailed out and I didn't get for at least a week. During this time Nicole was forced to take the Tylenol/Codeine. I can't control what other people do or don't do only what I do... I emailed the cardiology nurse to see if the cardiologist would be willing to prescribe the narcotic and he doesn't have any patients who take pain meds so he won't do it (at least I tried). I shouldn't have to fight every time I need a script to get it. The only options that I see is that I either find a new PH doctor or I get more than one script every 3-4 months when she sees him but I don't think this will work because of the strict laws of narcotics. The only other solution I see is that I will have to travel down to his office which is about 25 minutes from my house if the traffic is good and pick up a script every time. I also could email the doctor personally and let him know of my frustrations. Fortunately, Nicole will have enough pain meds to last through this site change I believe but I think she has not taken them as much as she should because she was afraid she would run out and just tolerated the pain. She thinks I don't know when she is in pain and how bad it really is. Janehttp://www.blogger.com/profile/12691428786689981385noreply@blogger.com1