All my life I have gotten questions about my health. ‘How long will you live?’ ‘Does having a heart condition hurt?’ And my favorite, ‘Can I catch what you have?!’ But as I start down this new journey of getting a heart and lung transplant – I am getting more and more questions than I’ve ever had before. And they are all great questions! So my mom had this idea of me putting together a series of FAQ Blog Posts that will hopefully answer some of the questions, you, my reader may have. I’ll do 5 questions for each FAQ post, so this will be broken up into segments and done about once a week. I encourage you to post any questions you have in the comments below and I will answer them in my next blog post! And please know – no question is off limits! I want to raise awareness and help you understand this process and my disease as best as I can!
1. “Why can’t you get the transplant here in Arizona?”
No one in the state of Arizona does heart and lung transplants. In fact there is a limited number of centers in the world that do this procedure. In the United States alone – they only did 30 of these transplants last year. Yes there are some places in Arizona who do heart transplants, but I need a heart & lung transplant.
2. “Why not just a lung transplant?”
From the time I was a baby we have been told I would need a heart and lung transplant. My heart is so sick and damaged that even putting new lungs in wouldn’t help make it better or reverse any of the damage. I have every type of arrhythmia you can imagine, and this is a huge indication of a sick or failing heart. Changing out the lungs isn’t going to make the arrhythmias go away or make my heart defect go away either. I have been in heart failure since the day I was born practically, I need a whole new set of organs to fix my health problems.
3. “How long will you have to live in Pennsylvania for?”
Honestly – we don’t know. When I start to get sick, I move out there and they start me on this Plasmapherisis treatment to bring down my antibodies. It’s about a two week long process. The treatment could work right away, or it could take awhile to work. Once it starts working and my antibodies are low enough, then the hospital starts looking for the organs. Finding organs can take a few weeks to several months – you just don’t know. Then after the transplant, I have to stay in the area as I heal. It all depends on how smoothly my recovery goes. We have been told to expect that we will have to live there for at least a year. And sadly, I would not be allowed to go back home to visit during this time.
4. “What are Protein Reactive Antibodies?”
These are antibodies that make transplantation very difficult. The more you have, the more likely you are to reject the new organs. Typically, the more surgeries you have, the higher your number is. I’ve had 4 open heart surgeries, 2 surgeries for my pacemaker and a surgery to remove a staph infection. The best case scenario is to have 0 PRAs. Worst case, 100. My number is 90. Which is why, the surgeon would want me to go through some called Plasmapheresis.
5. “What is Plasmapheresis?”
This is a process in which they pull out my plasma via a port in my chest, run it through a machine to clean it up (get rid of the antibodies) and then as they put the plasma back inside my body give me chemo to keep the antibodies from growing back. Each transplant center has a different protocol of doing this, but the end goal is the same – get rid of as many antibodies as you can!
If you have any questions you want answered – put them in the comments below and I will gladly answer them next Friday on FAQ Friday!
Hope and Love,