I don’t even know what to name this post as I am so overwhelmed with different emotions. I will do a brief recap of Nicole’s history. From Nov. 2012 – Dec. 2013 Nicole was evaluated for transplant at Florida Hospital in Orlando. We live right outside Orlando and Nicole goes to pulmonary rehab at Florida Hospital twice a week.
In Dec. 2013 we were told by the transplant center that they would not list Nicole and recommended that we take her to one of the other centers in Florida either Miami, Gainesville or, I believe, Jacksonville. We chose to go back to Gainesville as we have been there before at the start of our journey with Nicole’s illness. In Feb. 2014 we saw the doctor at the congenital heart center who said that he agreed that Nicole isn’t ready for transplant (lung/heart) and she has a much better chance with drug therapy. They will follow her every six months. I believe it was in March or April that Florida Hospital announced that they were temporarily closing their lung transplant program and the only explanation they gave was they were short a surgeon. I was glad that we left when we did.
At the appointment in Feb. at UF the doctor felt that Nicole needed to be increased on her pump medication as well as one of her oral medications. This though had to be agreed upon by her PH specialist as he is the one who prescribes and treats this. He didn’t have a problem with this when we saw him in March. It is such a slow process trying to get any medication changed because of insurance and in this case because of the nurse being out of the office a lot due to personal issues.
Nicole has finally gotten the chart that is needed for increases of her Remodulin which will coincide with her site changes which can be anywhere from 3 – 5 weeks apart. The doctor figured since she was already feeling bad from that might as well throw in some side effects to the medication as well. She will do her first increase of Remodulin later today as well as change her site.
I suspect the next week will not be good for Nicole. The other medication tweek that they wanted to make was with one of Nicole’s PH oral medication which is basically Viagra (it goes under a different name) and she has taken this since her diagnosis in 2010. The UF doctor wanted her to double the dose for three to six months and then double it again. The PH doctor informed us that this was a hassle to do with the insurance companies because Revatio is only improved by the FDA at 20 mg not at 40 mg. or 80 mg. so the insurance companies don’t want to cover it. It would be easier to switch her to the competitor which is Cialis (spelling is probably wrong) because she can take enough of it to be equivalent to the Revatio.
I spoke with the pharmacy tech yesterday to set this up. The plan, which as you know, can always change, and usually does, is to receive the medication on Friday which will be her last day taking Revatio and then on Saturday she would take the new drug. The new drug is only taken once a day as opposed to Revatio which is three times a day which means we have to re-work Nicole’s medication schedule and for right now she can eliminate one of her scheduled mediation times. She takes a birth control/hormone that keeps her from getting her monthly cycles because of heavy bleeding and her anemia and low platelet count. If there’s any missed medication or a change in the time it is taken this can throw her into the risk of a period/spotting for several weeks. I need to speak with the doctor/nurse before I change this but she takes this with her melatonin at night which she has to take at that time to help her sleep even though I don’t think it does. My concern is any side effects that she may have switching.
It is only Wednesday and I feel it should be Friday. Every time I try to clean or declutter the foyer etc. I get a phone call, my neighbor rings my doorbell etc. and it usually isn’t something I can ignore. It always seems at these hectic times you get a ton of to-do’s also so I have gotten several that are important that need to be also.
I have been very upset with myself and I know Denise would probably say I always am and I can’t say she is wrong. I know how proud of me she is for creating the binder system that I have for Nicole’s archived paperwork and I am too but I don’t do the maintenance like I should. I was put into a situation by the other PH support group leader that she shouldn’t have put me in when it came to another member of our group looking for a portable oxygen concentrator for a trip. They don’t have one and they have to pay to rent one and the insurance company is going to slow approving it etc.
The support group leader said we had an extra one. This is true but we use it. I would never have volunteered to let them borrow it and I feel bad for this but when it comes to Nicole health, let’s just say I am overly paranoid. Needless to say, I will let them borrow it because I feel I don’t have a choice in the matter. I hope that the one we have will work fine (as we have had problems with it) and we have no power outages etc. for the next couple of weeks. The concentrator was given to Nicole by one of our support group members who passed away last month. I can’t find the manual that had been printed out and given to us when she gave the machine to us at the beginning of the year even though I remember seeing it recently. This I should have in a place where I know exactly where it is.
All of this stress and getting behind in my to-do’s and not knowing what to do first because they are all important have me a little down on myself. I am so happy with the binder system and I have worked hard in my foyer and continue to do so. Even though I have done nothing this week, I went to do something this morning. Since I had gone through the homeschool/school pile and all of Nicole’s paperwork is done I didn’t know what the next step should be. Still don’t. This could be a bad stalling moment. I still have a long way to go for me to be happy with how I take care of Nicole’s medical issues.
I want to know exactly where everything is, whether it is a note from a phone call, a day at rehab etc. I want to know where all paperwork is even if it hasn’t made it to a binder yet. I want all her sheets from her medication list, to her first responder’s sheet, to her checklists updated when they need to be. As of right now they are not. I feel like I let Nicole down every single day because I am a disorganized, procrastinating, overprotective mess. I let her down her whole life because I didn’t make sure she was diagnosed earlier and was very laid back about things. I know I shouldn’t blame myself but I do. Not as much as the doctor’s but I do. It isn’t my fault that she is sick but it is my fault that she got so sick before it was diagnosed.
I cannot and will not let Nicole down again and I cannot let my emotions and the feelings that go along with my child being terminally ill and not being able to come to terms with this. I procrastinate with keeping up with notes, medication lists and all the administrative issues as well as with decluttering my living room because I have lumped this in with Nicole’s illness.
How do I keep all her notes and paperwork updated on a daily basis when I don’t want to think about all of the health issues (even though she is stable and doing well) because I want to forget them. I don’t even know if this makes sense. If there’s a lot going on for the day like phone calls etc. than I just don’t want to deal with it anymore and if it is a slow day I don’t want to deal with it because it is a slow day.
I saw a post come through I think it was yesterday from Denise about crying. As I said in the video chat with Pam I cried for two years every day after diagnosis. I have noticed that I am crying again a lot. Some of it is frustration that I can’t “just do it” and some of it is other things (financial, trying to get Nicole’s financial aid wrapped up for the fall etc.).
I guess the bottom line is how can I be there for Nicole and be strong for her when I can’t come to terms with the fact that she is seriously ill with no hope of getting better without a cure.
- The Good Phight: My Daughter’s Story, the path to diagnosis, treatments and acceptance (caregiving.com)
- What’s the Next Step? (caregiving.com)
- Overwhelmingness…. (caregiving.com)
- PHorum Speech (caregiving.com)
- Trip to Gainesville … (caregiving.com)
- “Not Being Sick Enough” (caregiving.com)
- Cardiology Appointment (caregiving.com)