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The Waiting Game

Mar 18

Posted by: ACHA
3/18/2014 1:07 PM  RssIcon

By Becca Atherton

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.

Becca Atherton was born with tetralogy of Fallot, pulmonary atresia and pulmonary hypertension. She was adopted as a baby into a large multiracial family, where she is the second youngest. Becca was given a 13% chance of surviving to the age of five, but she is 21 years old and a college sophomore at her local community college. She loves to read, perform American Sign Language to music and write on her blog.

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3 comment(s) so far...


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Re: The Waiting Game

Becca I know that waiting can be such a hard thing to do, Especially when your life depends on it. I'm 33 years old and was born with a single ventricle. And even though I may not be close enough to even thinking about recieving a heart transplant, I just would like to say that I will be praying for you that you recieve some word soon on your heart transplant, and it will hopefully be closer to your home. Try to be strong and don't give up hope.

By James April on   3/18/2014 1:56 PM
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Re: The Waiting Game

It's hard to wait, and harder to have to move.
I was in that position, but it turned out that I didn't have to move after all. The clinic where I was evaluated turned me down, and they suggested that I go to another one closer to where I live, which was very impracticle.
However, I had the good fortune to be referred to an excellent surgeon who was able to place a heart pump. Perhaps that's not an option for you, but maybe something will happen that you won't need to move, either. In any case, I'll keep you in mind. I hope the waiting will stop soon, and that all will work for you according to how it should.
Also, my brother had to have transplant. That also involved waiting.
Then one time when he went for a checkup, he was put in the hospital, as they had a heart for him there and then. Maybe something that nice and acceptable will happen for you.
Best to you,
Connie

By Connie on   3/19/2014 4:09 PM
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Re: The Waiting Game

I'm a 71yr old TOF patient. I've had to play the waiting game but glad I did. I have an excellent Dr. that lives in a different state. I know how you feel. I will be praying for you. It will all workout.
Gods peace be yours as you wait.
Janet

By janet lacosse on   3/21/2014 8:22 AM

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