When we have seen the doctor at the transplant center it has been said by him that although Nicole's lungs and heart are very sick she isn't sick enough to be listed for a lung/heart transplant.
This really bothers me! The tech who did Nicole's last echocardiogram, Daniel, asked where she was in the process of transplant and I said right now she is just being monitored because "she isn't sick enough" . He said he hated that statement and it was one of the worst oxymoron's. I agree....
We have known since Nicole's diagnosis in January 2010 that she would one day need a double lung transplant unless there is a cure found. I had three years to come to terms with this and I think that I had and while I was afraid for Nicole and afraid for myself, Rick and the rest of our family and friends at the thought of losing her I was still confident. When we learned earlier this year that she would need a lung/heart transplant because while her heart can be repaired in conjunction with a lung transplant it would take to long. I can't tell you how much of a body slam this was for me. I felt like it was the day of diagnosis all over again and my breath was taken away. Heart/lung transplants are the most rare with the most risk of any of the transplants. In the last ten years in the state of Florida there has only been five of these done. I still haven't come to terms with this.
I know how sick she is, but I also know that she will have to become much sicker with her PH progressing and the medication that she is on no longer working to keep the disease in check. Her heart can also start to fail which isn't good either but the PH is by far the worse of the two. I can sometimes even forget how sick she is from time to time when things are going well even though I see her with oxygen all the time I don't notice a lot. Nicole has what is called an "invisible illness" as it can not be seen if she isn't on her oxygen or in a wheelchair which also makes it harder for people to understand just how sick she is if they are not around her much.
Kathy, who was Nicole's respiratory therapist for awhile at rehab and has been a wonderful friend to both Nicole and I were talking one day after having lunch and I asked her "how am I going to get through?" It rips my heart out when she has a heart catheterization and I have to see her afterwards. How am I going to handle seeing her hooked up to tubes and machines? She said to me that God would prepare me for this and when the time came I would be ready. I hope she is right. If you had asked me five years ago if I would ever be able to be a caregiver for Nicole and do everything that I have done for her I would have said "no". Most days I look back and don't know how I get through them and do what I do... as I am terrified for Nicole's future and mine especially if it is without her. I have to trust in my faith and God to continue to watch over her just like he has for the last 18 years.
After Daniel said he hated this statement I decided when I was asked about Nicole and where she was in the transplant process instead of saying "she's not sick enough to be listed" I would instead say "As long as she continues to remain stable she isn't in need of a transplant." I think this is much more positive.