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Receiving a Transplant: When and If

Aug 19

Posted by: ACHA
8/19/2013 9:26 AM  RssIcon

By Becca Atherton

Editor’s note: At ACHA we know that life with CHD, as well as living with the prospect of a transplant, can be scary. If you need help managing struggles such as the ones that Becca illustrates in her blog post below, don’t forget that you can always contact ACHA at 800-921-ACHA or with any questions or concerns. We are here for you.

I've been struggling with some news that I got from two doctors of mine. It seems to be a recurring statement now that receiving a transplant when the time came would be too difficult and high-risk. A few weeks ago I got a call from my transplant coordinator. Hospitals have criteria when deciding who can have a heart transplant and she said one of these is that they usually like to have at least an 80% chance of surviving the transplant. Because of all the scar tissue I have in body, and something else called MAPCAs (major aortopulmonary collateral arteries), I only have a 50% chance of surviving the operation. We are having a difficult time getting a hospital to agree to perform the transplant when the time comes.

I hung up the phone and just cried onto my kitchen table. I've gotten bad news before, but my parents had always been there to hold my hand and comfort me. My sister questioned, "Why didn't you just ask her to call back?" Well, those of us who are in the medical world know how difficult and how long it takes to be able to get a doctor on the phone. So I told her that I didn't want to have play phone tag and I was tired of waiting—I wanted to know now.

There was a sickening feeling in the pit of my stomach that night and I barely touched my dinner, ordered out from one of my favorite restaurants. I stayed in my room until my mom got home from a meeting, needing to be comforted by her. I didn't tell a lot of people about the statistics until now, because I needed to work through them and cope with this news on my own first. Even though it's been weeks since I got that news, I still get this hollow feeling in the pit of my stomach and I feel as if I could throw up if I think about the “what if's” of my future.

It's a difficult decision to know the right time for a transplant. No one knows when I might die without a transplant. I could die in five years, but with a transplant, I could die in three months because of rejection and other complications. Obviously I'd choose living for five more years, but there is no way to know which choice would result in a longer life, and sadly, once you choose one, there is no going back.

When my mom told me that a past surgeon she had spoken with said to just "enjoy what time you have left," instead of getting a transplant, I couldn't stop crying. I felt abandoned, let down and like someone was giving up on me if they wanted me to make the choice to not get a transplant.

I asked my mom, "What if we say no and I die? Won’t you live the rest of your life wondering if I'd still be alive if we had done the transplant?" It's true, but she pointed out that if I had the transplant and I died during the surgery, she'd wonder for the rest of her life if I would've lived a little longer without it. The choice will be difficult, but I can't stop thinking, "At least I'll go out fighting if I get transplant. At least I'll know that we did everything we possibly could instead of letting this disease control me." What makes it even more difficult is that there may not even be a hospital that will even accept me into their transplant program in the first place.

I keep my mind positive by reminding myself that at least I'm not sick now. At least my health is doing as good as it has been in years. And now I just have to do whatever I can to keep myself as well as possible, for as long as possible. But I still can't help but worry about the inevitable fact that my health will at some point get worse... Then what?

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 20 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.

Copyright ©2013 ACHA

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7 comment(s) so far...


Re: Receiving a Transplant: When and If

Oh, Becca. I am so, so sorry. Come the end of August, I think about you every year because it just isn't camp without you. Your writing is stunning. Keep at it, every day. I'm sending you all of my love. - GoGo

By Rachael on   8/20/2013 7:59 AM

Re: Receiving a Transplant: When and If

Hi Becca
Thank you for sharing this with us. I'm glad you have your mum for support.

It's such a difficult position to be in. Hopefully your need for a transplant will be in the far distance.

Kathy T

By Katerina on   8/20/2013 7:59 AM

Re: Receiving a Transplant: When and If

I can sooo relate. i also have TOF and although I don't have PH, my pulmonary pressures rise with exercise which complicates things. I have had 4 surgeries so far so a lot of scar tissue in my chest. My daily function right now is pretty minimal. I was followed for about 6 years at a transplant clinic, then the doctor left. i have chosen not to return. Even though my VO2 (oxygen use with exercise) falls into the range that would qualify me for a transplant, I doing too well to get one. It is one of the dilemmas we face--when and if to transplant. When I first went to the clinic, we thought that it would be within a few years-that was nine years ago. And I'm still here, still living my life the best I can.

What keeps me going is knowing that my life still matters. It matters to my family, and it matters to the God who choses to keeps me here and use me. I take music classes at the local community college-one course a semester since that is all I can handle strength wise. I also mentor young women medical students and serve as an advisor at my church.

The hardest part of it all is living one day at a time. I don't know what my energy level will be each day or how long I can be out and about if at all. But God is using me and that makes it all worthwhile. I go back and forth between wanting to fight for a transplant and just accepting life the way it is. It is hard to give up the fight when you have been doing it all your life. So, I just fight for each day-to make a difference to one person a day. That can be as simple as getting a tired grocery clerk to smile or sitting with distressed student struggling with classes. That is all I know to do-fight to live each day as best as I can and let the future work itself out.

Good luck to you and God bless you.

By Deborah von Brecht on   8/20/2013 1:44 PM

Re: Receiving a Transplant: When and If

I can totally empathize with you. I was born with TOF, and have developed significant pulmonary hypertension and diastolic Congestive Heart Failure. Lots of thoracic scar tissue as well. I guess the thing I have a hard time dealing with is the matter of fact way my cardiologist says "at some point you will need a transplant" Seems like she should be freaking out a bit more, because I certainly am. I guess, on the other hand, I want to be in the care of a doctor that isn't shaken by this sort of thing and feels confident and capable to treat my condition.
Thank-you to all for sharing since having serious congenital heart defects can be lonely at times. Even my loving wife is very supportive, but she can only relate at a certain level.

By Joel on   8/20/2013 3:33 PM

Re: Receiving a Transplant: When and If

Wishing you well, Becca.

By Connie on   8/21/2013 7:58 AM

Re: Receiving a Transplant: When and If

Becca, I saw this post and it hit a chord with me. Like you I have tetralogy of fallot, pulmonary atresia, pulmonary hypertension, and plenty of scar tissue. I have been evaluated for a heart/lung transplant and while it hasn’t been ruled out, it’s clear the hospital I’ve been talking to isn’t exactly wild about the idea.

But here’s the other thing you should know about me: I’m 42 years old, married with two handsome children and a full time job. Given my heart/lung problems, many people I talk to in the medical community are surprised I’m still alive. Indeed, when I was a young kid the doctors told my parents I probably wouldn’t live to be 10 years-old. Not only did my parents throw a huge birthday party when I turned 10, but I’ve gone on to have a pretty great life in the 32 years since then.

Dealing with my heart condition isn’t easy (at times it’s been downright miserable) and my future will no doubt look different from my friends and peers, but the most important thing I’ve learned is not to spend much time worrying about the things I can’t control or lamenting the “what ifs.”

It sounds like you have a very positive attitude about your disease and I really hope you maintain that, regardless of whether you become eligible for a transplant. You and I are both beating the odds (big time) and you never know what the future holds. I’m proof that you shouldn’t assume you will start to fall apart in the next couple of years. Stay positive, stay hopeful, fight for what you believe in and enjoy the days you have been given as much as you can.

By Geoff G. on   8/21/2013 6:34 PM

Re: Receiving a Transplant: When and If

I know that this is a really difficult time for you. Having been in the same place, and same head space just a few short years ago, I have to say your struggle is one you must not endure alone. You are so wise to share your thoughts and concerns with your mother and others.
When I was in your place, I found myself looking closely of my fear of death, and realizing that my fear of pain, through more medical poking and prodding and surgeries was actually greater. It was at that point that my fear of what would come disappeared.
There may not be anything you can do to change the final outcome of your beautiful life, but you can do something to ease your own misery. Look inside your heart. Connect with that loving spirit that lives deep inside of you. Think about all of the incredible gifts you have shared with your family and friends, and allow these memories to replace your fear with love. Look closely at your face in the mirror everyday, and tell the person looking back how beautiful she is, how talented she is, and you love her unconditionally.
Whether your human journey on earth ends now or later, your spirit lives on forever. You are loved, and you are love. You are a beautiful earth angel who will one day go home to the world of spirit. Enjoy what you have here and now in every moment, and give the worries of what may come up to God and the universe. I am always here if you need to talk.

By Lorelei Hill on   8/29/2013 1:49 PM

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