Every time that Nicole has an appointment with her cardiologist or PH specialist it puts me in a tail spin for several days. That has been what this week has been like.
Nicole’s cardiologist agrees with the PH specialist that it is time for Nicole to be evaluated for transplant. This is scary enough. We knew this would come but I didn’t think it would be so soon. I don’t feel like I am ready for this but then I probably would never be.
Nicole and I attended a PH dinner on Thursday evening. One of the speakers was the PH specialist’s nurse. I get vibes from her that she doesn’t like me too much. Last year I spoke at one of these PH dinners and I was the first ever caregiver to speak; usually it is a patient. Anyway, when the nurse spoke she used the phrase “quality of life” and when it was my turn to speak I said I disliked that statement because to me I think of it as a negative statement. I don’t think she liked that too much… tough.
After the speakers and the dinner was over Thursday I talked to her about Nicole. I told her we saw the cardiologist and he wants her to be evaluated at the local hospital here for transplant. The look on her face said it all. She said that they just started doing transplants this year and this isn’t where the PH doctor was looking at for her. He’s looking at Mayo in Jacksonville. The cardiologist had given me the local surgeon’s contact information to set up an appointment if we made the decision to go ahead. I also said I wanted her increases of her medicine through her infusion pump to start again and she said she would have to come in for a test to see if it was better than the last one. If so, they would start increases. If not, they would keep it where it is. How much and how far do I push?
There has always been a question as to whether she would need a double lung transplant and a heart transplant or a double lung transplant and a heart repair. I learned something that I didn’t know or I don’t remember being told when the cardiologist said they would do the lung transplant and a heart repair. We knew she had a large VSD (ventricular septal defect). This is a hole between the left and right ventricle of the heart something she was born with. She also has three other holes lower down in the ventricle which can be corrected via a catheter. The large hole will need to be fixed surgically which they will do all of this prior to the lung transplant basically at the same time. They can’t fix the heart without the transplant because the pressures are too high in her lungs.
I went to the hospital’s website and saw that the statistics for lung transplant recipients is like 82% survival rate. Which is very good considering that there may be between 200 – 300 transplants done annually in the whole country.
I have a friend whose 19-year-old daughter is in the same boat with Nicole and they had a transplant evaluation and they were told that the five-year survival rate is 50% and that 20% I believe will die from organ rejection alone and that there is a high risk of cancer from the rejection drugs. They are some scary, scary statistics. The surgeon told them that in 10 years transplants will be so much different/better. They also say they will be able to grow organs from a person’s own stem cells in 10 years, too.
The thing is Nicole doesn’t have 10 years with the current medications to treat PH. My friend also said that while on the list you have to be within an hour from the hospital. We live probably a good three to four hours from Jacksonville which would mean we (Nicole and I) would have to live there. This also is true for University of Florida which is 2 1/2 hours away. The local hospital is 40 minutes at the very most with heavy traffic. Also, the cardiology nurse told me during the process they will see the patient weekly.
I know Nicole is all for a transplant because than she would be “normal” but I don’t know what her definition of normal is and we haven’t had time to sit down and talk about this as it is very hard to talk to Nicole as she doesn’t share her feelings.
The wait times for a lung transplant is anywhere from six to 18 months. I can’t stress enough the importance of being an organ donor. You don’t need them anymore when you die so why don’t you give someone like Nicole or somebody else a chance at life. Too many people die while waiting for organs.
This is why I would rather live in denial. I don’t have to think about Nicole dying from this disease without a cure or other medicines that will stop the progression of the disease or a lung transplant that will take months and months of recovery etc. if she makes it through the surgery. I can get by now kidding myself that things can stay just the way they are.