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.