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.
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.
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.
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.
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.
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.
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.
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.
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.
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.