Let me explain what being on a transplant list is like. This is not to discuss my feelings in regards to heart failure and needing a new heart, that's for a later post that I can't seem to put together.
This post is to illustrate the unexplainable anxiety waiting for an organ causes not just on myself but for all involved. While on a transplant list, you are always on call, similar to a doctor. I could receive THE call, the you have a new heart call, literally any day at any time. I relate the anxiety to an extreme version of waiting to hear if you have been accepted for your dream job after having an interview, or having a biopsy and waiting for the results.
Anytime I get a call from a (919) area code with Durham listed as the city, my heart sinks and the suspense and panic set in. That could be THE call. How do you prepare for that? How do you prepare for a new organ, a new heart, that could arrive today, tomorrow or in a couple years? The pressure forces you to question if you're ready for the process, for the surgery, for a new way of life, for a lifetime of medications, illnesses, biopsies, multiple transplants and surgeries and so on.
To try and communicate the amount of stress and angst waiting for a new organ brings about for me is beyond challenging. Yet, it is equally as burdensome on Sterling and my family as well. All of our lives will be changed, not just mine, for better or for worse. Getting a transplant is a team effort, requiring multiple caretakers that are financially and physically independent. Sterling's anxiousness in regards to all of this is compounded by the fact that he does not have cell reception in his school. He's afraid we'll get the call and we won't be able to get a hold of him. We're currently just tiptoeing through life.
This process is and will continue to take a toll on us, financially, physically, but more importantly mentally. We're both doing a great job of staying busy and keeping our minds focused on other things, especially since we just moved into an amazing new rental. We bought a fire pit and a grill and trying our best to relax our bodies when we can. However, that is not to say that it doesn't cross our mind daily. Asking ourselves if we are ready. Being on a transplant list, waiting for a new organ, as taxing as it is, is only the beginning. Receiving and maintaining life after a transplant will be an entirely different beast that I have yet to comprehend and process. That is for a much later post.
One of the reasons I felt compelled to share the emotions of this process is to impart that the excitement people have for me when they hear I am on the list, is not quite as exciting for me. It's an exceedingly complicated emotional roller coaster and this is a part of it, a part that needed to be shared for others to understand me and this process a bit better. As always, thanks for reading! Much Love.
Like many of you, I hate asking for money but unfortunately finances are a large part of getting a new heart. If there is any beer money you might have lying around over the next couple of years, any donation whether now or later will not go in vain. I love you all and always appreciate your love and support. gofundme.com/kiele
