The Waiting Game

A few weeks ago we got the good news that a hospital – although far from home – has agreed to evaluate me for a heart-lung transplant and see if they think they would be able to transplant me when the time comes. However, we haven't really heard from them for a few weeks now since the first time they called to talk to me about it.

At first we were told that the hospital was in-network with my insurance but now we are being told they still have to work things out with the insurance. My doctors in California gave the contact person my parent’s cell phone number as well as the home phone, but there was still an issue with a missed call left on our home phone.

To be honest, I'm not sure how I feel about trusting my health with a hospital that appears to me to be unorganized and unresponsive. We had planned on waiting to go see the doctors in California until after we visit the other hospital, but at this rate, my mom is starting to think we should go for a check up to California sooner rather than later.

I think what is so frustrating to me is the wait. I feel so good lately but there is still a part of me that is nervous and anxious to get answers about whether or not I am in need of a transplant. I trust how my body feels and it’s a good sign that I do feel good — but that doesn't stop me from worrying and being anxious about what the medical team will say. There is also that worry that they will say no and won't accept me into their program. All of these months would have been wasted waiting for a “no” answer when we could've been spending this time looking for another center that will accept me.

The only upside to having to wait is that it gives me even more time to let my body heal and for me to get back to my baseline from the beginning of this year. With a transplant center so far away, if I were to get listed (depending on what level,) I may have to move there so I would be close to the center. Honestly, I don't think I'm at that point, but you never know. Having to move would be hard on my family and would be something that I would hate to do. Which is why part of me doesn't mind not getting a doctor appointment, but the other part of me just wants to get it done and over with.