A letter to my mom...

I belong to a caregiving group at www.caregiving.com  The owner and founder of the group Denise Brown is a friend and life coach who helps me work out many of my issues.  My homework this week from our coaching call last week was to write a letter to my mom. So here it is. I think I said everything I needed/wanted to say.

Dear Mom:

I can’t believe that the 15-year anniversary of your death just past. It seems so long but at the same time not. I want to thank-you for watching over Nicole. I truly believe that God along with you and maybe angels have because there is no other reason why she is so sick and still with us. I would like to believe that you can see us and you have watched Nicole grow up. My deepest regret is you never met her or had a relationship with her.

I think I’m going to work my way backward. I hope that you’re not mad at me because I had a memorial service even though you didn’t want one. I hope that you remember what I said at this because I don’t because of grief and nerves. I hope that you’re not mad at me that I didn’t wait for the doctors to run all the tests to confirm for sure that you were brain dead. It would have taken too long and we only had so much time before Rick had to go back to work. Nicole ended up getting sick too. I believed that if you weren’t brain dead you would have breathed on your own without the help of life support.

I hope that you are not mad and will forgive me that I didn’t have the courage (it also grossed me out) to hold your hand when they took you off of life support which I think is odd because I have your ashes on my fireplace and I don’t find that creepy. I knew when I arrived the night before that you were gone because of a couple of things. The first was when we were driving through Pennsylvania and I was sleeping and had a dream that you were sitting in the back seat with Nicole sitting all prim and proper and staring blankly ahead. The second thing was when we finally got to the hospital. I was sitting next to your bed and there was a window behind me. I got the weirdest sensation/feeling that you were behind me looking through the window. I knew you were gone.

I remember on April 8, 1998, Jim (my brother) calling me and telling me that you had Stage IV lung cancer. He also told me you were going to refuse treatment and that they were giving you three to six months. I thought I was going to pass out. It was the oddest thing because that morning I was having “quite time” and I heard, as plain as day, in my head your voice telling me you would always love me. I learned later that it was at this same time that you were in respiratory distress and was waiting to be transferred via ambulance to the ER.

I also learned that you had had emphysema for at least a couple of years and you didn’t tell Jim or I and most of all you didn’t quit smoking… I don’t understand!!!! Your reasoning was you didn’t want to worry me… but that (to me) isn’t good enough. There’s so much correlation with Nicole and her health and she doesn’t want to tell me stuff so I won’t worry. I feel I deserved to know. I don’t understand how you could give up like you did.

I wish SO much that I had been there when you were given this kick in the gut news. I know exactly what that feels like. I don’t even know for sure if Jim was there or not. I believe it was April 12th or 13th but I’m not sure,  all I know it was the day after Easter that year that I spoke with you and the doctors were going to do a procedure (maybe it was a biopsy) where they were going to take a piece of the tumor in your brain behind your eyes (it was affecting her vision) to test it to see if it was lung cancer that had spread or was it brain cancer. I remember I believe during this call that you told me you wanted to be cremated and you didn’t want any fuss of a funeral. I remember your hesitation and nervousness of the procedure and tried to reassure you but at that time I believed that the doctors knew best and this had to be done, boy how things change.

Needless to say, I slept with the phone next to my ear and not very well at that. When I woke up I still hadn’t heard from the hospital. I had asked my mom if she wanted me to come up for the procedure and she said no. After numerous calls trying to find out information. I finally talked to a doctor and found out that there had been complications and you had hemorrhaged. They had her in a drug induced coma because of the swelling in the brain. We left on Thursday I believe for New York. I remember calling to talk to the doctor when we stopped for the night either in North Carolina or Virginia and finding out that they thought you had had a heart attack (this was mainly due to a test or something being high) but in actuality you had had a stroke that left you brain dead.

I don’t remember if it was my last conversation or the conversation I had with you after your diagnosis but you said something that I didn’t understand nor will ever forget. You said, “You don’t need me anymore.” I can’t tell you how hurt and angry I was at this statement as I would always need you. I felt guilty (and still do) because I didn’t call enough or wasn’t a good enough daughter for you to say this. Like everything else in life it seems everything comes full circle. I can understand in some ways why you said it because I fear this with Nicole even now… I know she relies on me for her health issues but that’s all. I struggle not to feel like she doesn’t need me anymore.

You died without a will which meant Jim and I had to take care of this. We would be still waiting if I hadn’t taken it over for Jim. I hired an attorney and started the process. We were beneficiaries in her life insurance policy. I took a portion of that money and took a correspondence course on medical transcribing as I thought this would be work I could do from home and also to understand your medical records. I also found out that you were addicted to anti-anxiety medication (I don’t remember without looking what they were but I recognized the name so it was popular). All you needed to do was call the doctor and he would call in a prescription without even seeing you. I couldn’t believe this. I was livid. This process was more than a nuisance than anything because you didn’t have anything of monetary value.

One last question that bothers me is … why didn’t you ever discipline me? You just allowed me to do whatever I wanted and while it isn’t your fault I think I got into a lot of trouble that I wouldn’t have if you had. It made me feel like you didn’t love me enough to give me a curfew, or to ground me… I may not have paid any attention to it but you could have locked me in my room with the window barred shut. I have struggled with this with Nicole. I feel like if I discipline her she will feel like I don’t love her which is just crazy because I know I felt that way because you didn’t discipline me.
I lied… I have one more question… Why did you allow Jim to treat you like he did? I know the guilt you had because you couldn’t support both of us and so I am sure Jim played on that guilt and I am sure he brought it up many times how you owed him because of this. I wish I had known he was doing this… it just isn’t right and he should be so ashamed of himself (even though I know he’s not).

I will always be grateful for the last words that you said to me which were “I love you.” Every time I go somewhere, go to sleep, talk on the phone etc. with Nicole this is always the last thing I say. If something were to happen to me this is the last thing that I want to leave her with.

*****
I wrote this letter over a period of a few days. While I was typing it up this morning I thought about my obsession with hoarding food. If you came to my house on any given day and looked in my pantry it is overflowing and I even have a shelf in the spare room of oatmeal and snack foods. If you were to look in my fridge it is full. If you were to look in our free standing freezer the odds of something falling out on your foot is over 90%. I know that I have this obsession because of going hungry as a teenager and being too afraid of being there again. I know it is ridiculous to have eight boxes of instant oatmeal and while some of it is from lack of organization and not knowing what I actually have some of it I carry from my childhood and don’t blame my mom at all … I blamed my dad if anybody.

I also see a lot of the anxiety and other issues that my mom suffered in Nicole. Nicole is very anxious and afraid of a lot of things and gets very upset over the smallest things. She wants to please everybody. I can be like this too but not to the extent that she is.

The plan when my mom was diagnosed was to bring my mom down here and live with us until she died. I even talked to her doctor about it and he agreed. I knew that Jim wouldn’t give her the care she would need. Unfortunately, this never happened but I regret not having that time with her. I also regret that I never got to say goodbye properly.

It is my biggest hope, when pertaining to my mom, that she would be proud of me and the way I have lived my life.

Transplant Appointment

On November 20,  2012 we had our first transplant appointment after both Nicole's cardiologist and her PH specialist believes the time for this has come.   It was also agreed upon that she would go to the center that is local as opposed to the one 2 1/2 hours one way from our house. 

In December she had a CCTA and TEE to get some pictures of her heart.  The question is can she just have a double lung transplant or does she need a lung/heart transplant.  Nicole has a large 2 1/2 cm size VSD (which is a hole between the right and left ventricle of the heart) as well as two or three other smaller VSD's.  She also has a PFO which is like an ASD (artial septal defect  which is in the top part of the heart) but instead of a hole it is a flap.  She also has Eisenmengers Syndrome which is reverse shunting of the heart.  On Jan. 2nd, 2013 she had a right heart catheterization to round out the cocktail of tests. 

Last week we had our first appointment back to the center since these tests.  The lung director came in and told Nicole and I based on the tests they performed they believe she needs a heart/lung transplant.  Let me tell you,  this was like a kick in the gut... it was like the day of her diagnosis three years ago except for I didn't lose my breath.  We have always known that she would need a lung transplant but as the cardiologist said it would be "years down the road" .  I  didn't realized that was only a mere three years after diagnosis in Jan. 2010.  I tried so hard to keep my composure because I have to be strong for Nicole but I failed and some tears leaked out.  The nurse caught on to this and got me some tissues.  I think the doctor could tell too.  Nicole was sitting in the middle of the room in her wheelchair and I was in the back so she had her back to me.

The doctor went on to explain that the reasoning for this is that while her heart is repairable it would take too much time to do this and they are under a time frame as the lungs have to be in the body within six to seven hours. I record all of Nicole's appointments but haven't been able to listen to this one yet.  It was my understanding that Nicole's PH specialist, her caridologist, the two doctor's at the transplant center and a pediatric heart surgeon (who we haven't met) was going to get together and discuss the options.  I was under the impression that this had happened.  According to the cardiology nurse the meeting that was originally scheduled one of the doctor's at the center had a transplant and only the other transplant doctor and the PH specialist showed up for the meeting.  It was never rescheduled.  It's my understanding that the cardiologist doesn't agree with this recommendation and believes that the heart can be repaired and she would only need lungs.  They have even tossed out that I should go for a second opinion in Gainesville or Miami.

I don't know what to believe.  We also saw the social worker at this appointment.  Nicole was diagnosed with generalized anxiety disorder (GAD) and obsessive complusive disorder (OCD) in 2005 and takes Zoloft for this.  She sees a psychiatrist and a counselor/therapist.  The social worker said that all the things that would be a concern for them we are already taking care of since she doesn't have any drug, alcohol or cigarettes addictions.  The doctor asked for the name of her counselor which I gave to him.  He also said that he would like Nicole to start talking about her feelings toward transplant with her and also he wanted her to do research about it.  They are also going to get a mentor for her which is somebody that has had a lung or a lung/heart transplant.  He also wants a conference with Rick and I and the social worker and it is my understanding that this would be without Nicole present which would allow me to ask questions that I wouldn't ask in front of Nicole.  She also needs to get another 6MW (this is a diagnostic test used to measure how well a medicine is working.  It is basically what its name implies a  6 minute walk. She walks for 6 minutes at her own pace and they will log in the distance to see if she can walk farther than the last time she had one).  I'm not sure if she will be able to get this done at rehab or we will have to go back to the transplant center.  She also needs more bloodwork which we will go to the hospital for on Thursday.  I don't remember what the bloodwork is for though.  I think and hope they will check her potassium as this is like a yo-yo going up and down. 

I got a call that evening from Nicole's counselor asking if I would give her verbal permission to talk with the doctor as he had already called her.  I did give this and I can because I have power of attorney for Nicole and have since the day she turned 18.  She sees her counselor the first full week of March so hopefully she will let us know what the doctor wants her to do. 

This has been very emotional for both Rick and I as well as the rest of the family.  I know it has for Nicole also but she usually has delayed reactions to trauma or stress. It will manifest itself  in  some way. 

I have looked at some statistics for heart/lung transplants and in 2011 the estimated number of heart/lung transplants in the US was 30.  The cost of the procedure was $1,248, 400.   This is the lowest number of all the transplants listed.  According to a 2010 study that assessed the long-term outcomes of people who have had a heart-lung transplant they found that:

• 70% will survive for one year
• 50% will survive for two years
• 39% will survive for five years 

I'm not impressed with these statistics.  I had a hard time coming to terms with a 50% 5 year survival rate for a double lung.  I guess the biggest question for me is does the benefits out weigh the risks and I can't say that I truly believe this.

One of my concerns is that Nicole believes that she will be "normal" if she gets a transplant and I don't know if this is realistic.  I heard  Helene Campbell say on the Ellen show after her double lung transplant this it wasn't a cure but a treatment and this is very true.  Nicole will not have the illnesses anymore, nor will she have to be in a wheelchair because she can't walk long distances or be on oxygen 24/7 but  there is a lot of other things that she will have to do for life.  The first two years after transplant is filled with a lot of tests, bloodwork, clinic visits,  rehab etc. but her quality of life will be better so they tell me.

Anger and frustration....

I had really believed that I had worked through my issues of anger at the medical community over the extreme negligence that has been displayed during Nicole's life.  Obviously, I still have a way to go....

After yesterday's, prescription debacle and the anger I have at the doctor who either personally wrote the script for a narcotic for Nicole's site pain or had someone else write it and he just signed it without making sure it was correct and the consequences being that Nicole has to take a narcotic that makes her feel worse with side effects of nausea and dizziness and doesn't seem to manage the pain all that well.  It is just an unacceptable mistake in my eyes.  I realize that we are all human and we all make mistakes and I can accept that and I try very hard not to have unrealistic expectations but when almost every single doctor (and she has seen a lot of them) in Nicole's life has not done something they should not have, not told us something that would have made a difference or made me question things more etc. this gets past the point of just a simple mistake.  

Yesterday, was a day that really tried my patience and forced me to see I still have a lot of anger which I didn't realize until this morning.   I have a goal for 2013 to get my house declutter and to get organized so I can feel more in control of the chaos that is my life.  I have been working every morning for 30 minutes on getting Nicole's medical records in order.  I can almost see the light at the end of the tunnel.   I have been getting the records from her former doctors together and I was working on the allergist.  She saw this doctor from 2001  until 2011.  Nicole has only a few allergies on paper but one of the worst is to dust mites and she was in the office once a week for at least three years for allergy shots.  In 1999 when she was originally tested while in the hospital for double lung bacterial pneumonia her IgE levels were 441 the normal range is between 2 - 25.  Her pediatrician said "she has allergies we don't even know about"  The IgE is one of the five subclasses of antibodies.  IgE antibodies are found in the lungs, skin, and mucous membranes. They are associated mainly with allergic reactions (when the immune system overreacts to environmental antigens such as pollen or pet dander) and parasitic infections.  I was going through her records that I received at some point in the last few years but I believe they stayed in the envelope that they came in because I didn't have a reason (in my eyes to really look at them) I believe these records were through 2007.  This doctor was not the doctor who diagnosed her with asthma he just treated her for it.  If  you have seen an allergist then chances are you have had a pulmonary function test (PFT).   I was looking through the PFT's that she had taken and during 2006 - 2007 she had at least three PFT's that had an interpretation saying this:  "possible EARLY OBSTRUCTIVE PULMONARY IMPRAIRMENT.  This is suggested by the reduced FEF 25 -75 with a normal FVC and FEV1 (I have no clue what that means).  This finding can be due to a mild degree of small airway disease and/or the earliest stages of emphysema.  This may be reversible in nature; therefore, REPEAT TESTING FOLLOWING BRONCHODILATOR ADMINISTRATION IS RECOMMENDED.  This interpretation is only valid upon physician review and signature. "   Now I ask you ....... why wasn't I told this??????? Isn't it a little bit of a HUGE red flag when they are interpreting emphysema in a child of 12 years old.  I don't know of too many of them.  I also don't recall her ever having any bronchodilator administration.  This is just another example of negligence on the doctor's part.  If I had known this I would have asked more questions and had her get more testing etc. 

My concern lately has been the fact that Nicole has had so many GI issues.  What have they missed pertaining to this?  My fear is that she has other issues going on.  She has been seen twice in her life by GI's and the first one I blame for the first real mess up with her diagnosis being missed and this is where her congenital heart defect was missed and she probably also had her PH at this point.  The second GI doctor  who I really, really liked was much more on top of things but all the tests that she did came back normal so the mystery remains and is assumed (which we all know what that means) that it is the Tyvaso (which she was on at the time)  and other PH drugs causing her stomach issues. 

The feelings of helplessness and the lack of support I feel from the medical community is one of the hardest things to accept.  I have to fight and fight for everything.  I know that I am not alone in this fight and there are many others with PH or any other chronic disease that must go through what I do.  The Bible says that God is our vindicator but as of yet I don't feel that there as been any closure or justice for Nicole. 

Continuing the transplant process

We started the transplant evaluation process in November 2012 after both Nicole's PH specialist and her cardiologist agreed that it was time for this.  She saw the heart/lung surgeon and than she saw the lung director at the transplant center.  The doctor ordered several tests which included an echocardiogram, a CCTA scan in which they inject dye into the patient and watch how it flows through the heart, a TEE which is where a tube was stuck down her throat with a camera which shows images being seen on the sonogram machine, and lastly a right heart catheterization.  After the doctor had gotten the results of all these tests the doctors at the transplant center, another heart surgeon that specializes in congenital heart defects, her cardiologist, and her PH specialist were all going to sit down to discuss a plan of action, namely can they repair Nicole's heart or does she need a new one in addition to two lungs.  I know there was a meeting schedule for the second week in January but one of the doctor's at the transplant center had a heart transplant and couldn't attend.  The PH specialist told me that only himself and the lung director showed up for that meeting.  To my knowledge another meeting has not be scheduled.  During the week of January 21st when Nicole was in the hospital the transplant center center had called because they had received an email about the PH support group meeting which also stated that Nicole was in the hospital.  The doctor wanted his coordinator to call and find out how Nicole was doing.  She also wanted to schedule an appointment to come in and continue with the transplant process and told me to call either the following week or week after.  It has been two full weeks since Nicole was released and I have been procrastinating about calling.  They did call on Friday but my cell phone was in Nicole's room as I have her medicine alarms on it. I had a call so Nicole had to take her medicine without me waking her up.  I didn't return the call on Friday like I should have either.  I MUST DO this on Monday regardless of my fears. 

My friend, Denise, founder of caregiving.com,  had asked me to blog about this and write out my feelings.  I am hoping that this will let me come to terms with my feelings.  I am procrastinating because I am afraid.  I am afraid because I don't want to hear the results of the testing and what they will determine, I am afraid she will die during the transplant itself or after the transplant because of complications (infection, rejection).  The 5 year survival rate for lung transplants is not as good as I would like and while I don't have the exact number in front of me I believe it is right around 50%.  I am afraid I will not be strong enough to endure this as it will mean a long hospital stay and require Nicole being hooked up to many machines and breathing devices.  I can't in good conscience leave Nicole by herself in the hospital.  I am afraid that they will deny her (either the transplant center or Medicaid) or we will not be able to raise the money needed.  The estimated cost of a double lung transplant in 2011 was $797,300 and the cost of a heart/lung is $1,248,400.

I'm afraid that Nicole's perception of being "normal" after a transplant is unrealistic.  I don't have the specific information in front of me but I know that while she will be "cured" of PH and she will no longer have heart issues she will not be able to go out into any public place like malls, Disney etc. for the first six months after transplant.  She will have to wear a mask to protect from germs in public for the rest of her life.  She will have to visit the center on a weekly basis for either the first six months or year.  She will also get regular testing.  She will still take a lot of medication (maybe not as much as she does now).  She will have to keep a daily log of symptoms and all her vitals including blood pressure, oxygen saturation levels, temperature twice a day for the rest of her life.  She will be normal in the respect that she will be able to breath normal but I don't think she really grasp what after transplant life will be like... the question is will it better than it is now or not??????  

Follow up with Infectious Disease Doctor

Nicole took her last doses of antibiotics yesterday.  I know she was so thankful as the Flagyl caused a very bad taste in her mouth where nothing tasted good and also the nausea was brutal.  She also vomited last night. 

We had a follow up appointment that the doctor requested upon her discharge from the hospital.  He answered all our questions today.   My biggest question was/is how did she get colitis?  He doesn't know.  Every blood culture and every test for bacterias that cause colitis came back negative.  He is also curious as to why they couldn't see her appendix on the catscan.  He said he wasn't totally convinced that she had infectious colitis as this is usually widespread through the colon and hers was focal in one spot where the colon joins the appendix that they couldn't see.  The antibiotics took the fever away so as he said to Nicole she is just a mystery to them.  I agree with this.  Nicole her whole life has had issues that the doctors can't tell us why she has them.   He couldn't answer with certainty if this would happen again.  I explained to him about the Remodulin causes diarrhea and he said that her having diarrhea on a regular would not cause colitis. 

He did recommend that she be evaluated again with a gastroenterologist.  She has seen two different ones in her lifetime.  She has had a sonogram, an endoscopy, been tested for lactose intolerance, celiac disease and I believe that is all.  He believes that she should be tested for crohn's disease and/or colitis that is caused by ulcers which both fall into irritable bowel disease.  I didn't find anything that said irritable bowel syndrome will cause colitis and he didn't mention being tested for that.  He said that they did not have to put her to sleep for a colonoscopy they could just sedate her. 

I will just wait for a report from his office of the visit and then talk to her ph specialist and her cardiologist and get their opinion on how this should be handled.  I definitely don't want to see her in the hospital again and I know she doesn't either. 

Transplant evaluation update

Nicole was recommended for transplant in November of 2012 by her cardiologist and pulmonary hypertension specialist.  On November 20, 2012 she saw the director of the heart/lung transplant department at Florida Hospital Transplant Center.

On Dec. 5th she saw the medical director for the lung transplant department.  There is no question that Nicole needs a double lung transplant but the question is what to do with her heart.  Nicole was born with what they have told us are  several congenital heart defects.  She has a large VSD (ventricular septal defect).  A VSD is a hole between the left and right ventricles of the heart which is the lower chambers of the heart.  We were also told she has three other smaller VSD's.  We were told that she also has an ASD (atrial septal defect) which is a hold between the right and left atrium which is the top part of the heart.  Because these defects weren't diagnosed until Nicole was 15 years old it has caused Eisenmengers Syndrome which is a rare heart condition that causes reverse shunting of the heart.  In a normal heart the blood shunts from left to right but with Nicole it will at some point reverse to right to left which will cause heart failure.  The combination of the heart defects and Eisenmengers has caused her pulmonary arterial hypertension which is high blood pressure within the arteries in the lungs which basically causes the arteries to narrow and cause difficulty with breathing.  The damage done to Nicole's lungs can't be reversed and there is no cure for this disease.   

The lung director had ordered three different tests to get good pictures of Nicole's heart and the way it functions so a team of doctors which include the two at the transplant center, Nicole's cardiologist, Nicole's PH specialist and a pediatric heart surgeon who specializes in congenital heart defects can get together and figure out if the heart can be repaired or if she needs a new heart. 

On Dec. 21st Nicole had her first heart related test called a CCTA scan which stands for cardiac computed tomography angiography.  This is an imaging method that uses a CT scan machine to look at structures and blood vessels of the heart.  Dye is injected into an IV and then pictures are taken of how the dye moves within the heart.  This test seemed to go well and the worse part Nicole said was when they injected the dye as it made her feel real warm and the sensation of peeing her pants.  We were told by the nurse that they got some good pictures.  This was an outpatient procedure.  We ended up driving a hour away to another Florida Hospital because they had a better machine.

On Dec. 28th she had her second heart related test called a TEE which stands for transesophageal echocardiogram which uses sound waves to create high quality moving pictures of the heart and its blood vessels.  A camera was stuck down Nicole's throat and pictures where taken from Nicole's stomach of her heart and captured on a sonogram machine.  The worst part of this test was the gargling of the numbing solution.  Nicole had to gargle three times for a minute or two each time and then swallow the stuff.  The first time her gag reflex took over and she spit it back out so the next two times I had to hold her mouth shut. When Nicole had to start the gargling the nurses told me that I had to go into the waiting room but Nicole got very nervous and anxious which her doctor saw and said that mom should stay for this part.  Right before I left they gave her the medicine for the sedation part.  The doctor wanted to make sure that she didn't remember any of the procedure .... which she didn't.  She seemed to take a long time to come out of the sedation.  The doctor showed me all the pictures and explained everything to me.  During the procedure they inject bubbles and they can determine where the holes are by watching them.  The doctor could not see any evidence of an ASD as the bubbles didn't travel across from the ventricles to the atrium (there's a flap type thing that separates the two chambers).  He also didn't see three smaller VSD's but what he believed was a channel that gives off the illusion of three smaller holes but he thinks it is only one.  He said that her right ventricle looked very good.  With PH the disease will weaken the right ventricle and so far this hasn't happened in Nicole's case.  He said her bicuspid valve looked very good with no leakage  and he thought maybe the pressures have come down in her lungs.  The doctor and I were very encouraged by this but an echo isn't always an accurate indicator so this is why the gold standard testing is the right heart catheterization. 

On Jan. 2nd Nicole had a right heart catheterization. Anytime she has this procedure it requires an overnight stay in one of the lovely suites in the cardiac ICU floor of the hospital. Nicole was going to be sedated again for the procedure since putting a patient "to sleep" is very dangerous for someone with PH.  Once again she woke up during the procedure because the anesthesiologist I think is a little over cautious which isn't necessarily a bad thing but it can create a bad experience for Nicole.  The procedure seems to take longer than I always think.  We were in the prep room where they start the IV get all the history meet the doctor's etc. and my friend and Nicole's old respiratory therapist at rehab happened to look on facebook and see that Nicole was at the hospital and came by to see her.  She stayed in the waiting room with us until I was called and told that the procedure was over.  She then went home.  I told her she could stay and go see her but she didn't want to intrude on "family time".  I absolutely love Kathy and everything she has done for Nicole and me.  It was very nice of her to spend her first day off from work in a long time to sit at the hospital with us.  One of the doctor's came in and explained how things went.  He said her pressures didn't go down but the number he used reflected a lower number than last time.  He said essentially everything was the same as her last cath in June 2012.  He did say that she doesn't have an ASD but an PFO which is a patent foramen ovale which is a hole between the left/right atrium but technically isn't a "true" hole but more like a flap that intermediately will open and allow blood to cross over.  I think that this is right but I could have it reversed but the left side of the heart has the red blood and the right side has the blue blood and with Nicole's VSD they are mixing so her lungs and other parts of her body are getting blue blood when she should be receiving red blood.  If you see Nicole without O2 (oxygen) her lips may be blue and her fingernails and toenails are always blue and this is called cynosis which is caused by her VSD. The two doctor's present for the cath both agreed with Nicole's PH specialist that there was a channel along the ventricle that gave off the illusion of three smaller holes but in actuality he believed there was only one.  During this procedure they also checked the pressures in her liver because increased pressures in the lungs can travel and impact the liver thankfully her liver is good.  After the procedure Nicole had to lay flat without moving for four to six hours.  When they took the balloon thing off her groin she was almost in tears from the pain... it breaks my heart.  She is so brave and is such a trooper. 

It is my assumption that I will get a call from the lung department at the transplant center having us come in to explain all the conclusions that the testing came up with and what is the plan in regards to Nicole's  heart .... transplant vs. repair. 

I will keep you all posted as we go down the path to possible lung/heart transplantation. 

I know that there are more tests that need to be done but I hope that these were the most strenuous for Nicole.  It is very stressful and difficult watching Nicole get all these tests done and the anxiety and stress this causes all of us.

November is Family Caregiver Month...

Today is the first day of  family caregiver month.  I was thrust into this role almost three years ago in January 2010 when my then 15 year old daughter was diagnosed with a congenital heart defect as well as pulmonary arterial hypertension and Eisenmengers Syndrome.  Both of these were caused by the lack of diagnosis of her congenital heart defect. 

To say this role has been difficult is an understatement.  Our lives were forever turned upside down.  For any caregiver, it is painful to watch your loved one be sick and/or watch them get sicker.  I can't express the feelings of helplessness I feel every single day. 

I had a friend on facebook private message me apologizing that she hadn't wished me a happy birthday.  She said that she thought about me every single day and wished with all of her being that she could help... but to no avail.  This really got me thinking about my experience with friends and acquaintances.  I get those who are just very uncomfortable around me for whatever reason... then there are those who don't want to bother me because I have "too much on my plate"  and while this may be true ... it is my decision to make as to whether or not this is true in my eyes.

There are those like my friend who feel that there's nothing that they can do but there are so many things you can do to help a family caregiver.  I belong to a wonderful online community of caregivers at www.caregiving.com and every Friday is take a meal to a family caregiver day.  I think that this is a wonderful idea.  You can call, text, email, private message a caregiver that you are thinking of them and it doesn't cost anything and it will put a smile on their face.  In Sept. Nicole had a doctor's appointment and a site change the same day and it was going to be a long day and a friend of mine late in the afternoon when we were still at the doctor's office called me and said she had a meal for me that she wanted to bring by.  This was so sweet of her and while she had to bring me the meal the next day it was so much appreciated.  A get together for an hour for a cup of coffee, stopping by the house to say "hi", a card in the mail etc.are all little things that mean so much.    My next door neighbor will bring me my mail, bring up my garbage can on garbage days and/or just come over to ask how Nicole is doing.  It doesn't have to be something big to make an impact on a caregiver's day.  

I understand how my friend feels.  I can't express how it feels to have a child (whether they are young or an adult) with an incurable illness.  The guilt (at least for me) and the helplessness I feel some days overwhelms me.  To me there is just a different bond/relationship that a mother has with a child than with any other relationship.  This is not to say that caregiving isn't difficult for anyone who who takes care of a parent, spouse, sibling, friend etc. because it is. 

I know that I can't make Nicole better which is a very hard pill to swallow and I wallow in this with denial, self-pity etc. but I have to think about Nicole as she is the one with the illness.  I would do anything to be able to make her better but since God is the only one that can do this and the only thing I can do is to  make her life easier which is my goal every day and I will strive to do this to the best of my ability regardless what people say or how they judge.

What can you do today to make life easier for a family caregiver?