Wednesday, August 28, 2013

Transplant 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. 

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. 

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. 

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.  

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. 

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. 

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. 

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.

Wednesday, August 21, 2013

Random 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. 

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.  

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. 

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.  

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. 

Monday, August 19, 2013

Is 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. 

 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. 

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. 

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. 

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. 

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. 

Sunday, August 18, 2013

Learning 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. 

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.

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. 

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. 

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. 

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.  

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. 

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. 

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. 

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.