Update

Doctor's AppointmentIt has been awhile since I have written on the site and a lot of things have gone on with Nicole’s care in the last couple of months. For those of you who don’t know me 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 February, 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 too 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 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 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 cited 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 lengthy 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. We agreed to 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 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 appointment 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.

The following week right before Thanksgiving we were called with an appointment for Decemeber 18th. 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 why you might think that.” He also told us that they were approved to 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 also wanted us to get the second opinion which 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.

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 realized earlier what type of person we were dealing with so I could have avoided all of this crap. Nicole 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 too and he refused to give me any concrete examples.

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 February 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 as patients and actually give them 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.

We have no idea what will happen at the transplant center as the doctor didn’t say. So once again we are in limbo…

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Avatar of Jane

About Jane

My name is Jane and I care for my 19 year old daughter, Nicole, who has several congenital heart defects, Eisenmenger's syndrome and pulmonary hypertension which is a rare, life-threatening, incurable and progressive lung disease that causes blood pressure within the pulmonary arteries to become higher than normal. She also has several other health issues that are not as severe.I have two blogs one is "A Day in the Life" which chronicles Nicole's diagnosis and our everyday life. My other blog is "Let's Get Organized" which chronicles my struggle to get the clutter out of my house and get organized.

3 thoughts on “Update

  1. Maria Keil

    Jane,
    I’m SO sorry to hear this! Communication is SO important and this just illustrates this.
    Sending you prayers and hugs from Kansas,
    Maria

    Reply
  2. Avatar of ejourneysejourneys

    Jane, this is heartbreaking and infuriating by turns. I am so sorry.
    No one — not even someone in the best of health — deserves that kind of runaround and dismissal.
    Am sending prayers and (((Hugs))) to you all.

    Reply
  3. Avatar of PegiPegi

    Jane, so very sad. All your hard work and waiting. I agree with ej, its infuriating. My head is still spinning just from reading your post. Sending prayers to you both. Hoping you get the answers you need soon.

    Reply

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