changing the way we talk about transplant

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FFXyojimboFFX

Guest
great blog! and i have a few questions for you, i'm pretty much in the same situation except i choose never to get a transplant about a year ago i got hit by one of those really nasty flus and went from being able to run a mile to having a hard time getting dressed in the morning so my questions are. Do you ever feel like you don't deserve a transplant? i never really took care of all my medication nor was i pro active about CF or Do you ever feel like someone else might enjoy the new lungs more then you? like i don't feel like i would be happy even if i got one. and my final question is Do you ever feel that maybe skipping out on a transplant could save someone elses life? like giving up the chance for yourself is giving another person a chance. i would love some answers from everyone im struggling very hard and maybe a few of those answers could make me feel better about my own choice.
 
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BreathinSteven

Guest
Wow. Just wowWow. Just wow... Your post is incredible. An insightful, good read - thank you for pouring out your feelings and worries about approaching transplant...

I think I may have been a lot like you in my younger days. I think the drive to stay healthy - to be "normal" - to have my CF take a backseat to everything - was pretty strong. I wanted to be Steve. I didn't want to be Steve with CF or defined or limited by my CF. Yet - I was probably wise enough to know that I had many limitations.

I was kinda lucky when the decision to go the transplant route cam along... I had been degrading gradually - then had a substantial pneumothorax in 1996 that never quite resolved and greatly hampered me - then a hemoptysis took me down the rest of the way until I had two options: transplant or death. The choice seemed easy.

You're right - it's a risky surgery and a hard recovery... But you've overcome so many risky, difficult things already! As to risk - it's good to keep in mind that the VAST (85-90%) of us are alive a year after surgery! Rule#1: avoid that other 10-15%!!! And we all have different journeys, and we all have bumps - but recovery is surmountable... I was out of the hospital in six days. I walked a mile 10 days after surgery. I walked 2.5 miles 15 days after (walking with my princess was my rehab - we've been married for 26 years now - my beautiful donor gave me 15 of those years...)

It seems you're incredibly conscious of your health and what it takes to maintain it... I think you are going to be an amazing double lung recipient! I'm proud of all you've accomplished this far in life - I can't wait to hear what you're like with "real" lungs, Caitlin.
I've had my beautiful lungs for 15 years now, Caitlin... I think about the amazingly beautiful 17-year-old girl who saved my life throughout the day, every day... The allocation of lungs was different when I was listed - I waited almost 3 years - my lung capacity had owned down to 10-15%. This blows my freaking mind, Caitlin. In my wildest, WILDEST dreams I'd never imagined just breathing could feel this good, this fulfilling. I don't think we have the frame of reference. It's been over 15 years and I think about it constantly.

And it's not only the breathing - it's the time. And I'm not just talking about the extra 15 years... While I was waiting - my CPT took around 7-8 hours daily. Inhaled & IV meds were another 2-3 hours. 7-8 small meals to try to gain wait another 2-3 hours. Just my medical issues were taking 14-16 hours daily. Now - I take 10 minutes daily to measure my spiro, temp, BP, glucose, etc... My donor gave me an amazing ability to breathe, and 15 years - but she also gave me 16 more hours to every freaking day!!!

I hope your journey is as amazing as mine, Caitlin... I think you will find it to be. You're in my thoughts - I hope yo get our new blowers soon! I have some of our story at www.ClimbingForKari.org

Love, Steve
Steve Ferkau
Chicago. IL
 
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BreathinSteven

Guest
FFXyojimboFFX said:
great blog! and i have a few questions for you, i'm pretty much in the same situation except i choose never to get a transplant about a year ago i got hit by one of those really nasty flus and went from being able to run a mile to having a hard time getting dressed in the morning so my questions are. Do you ever feel like you don't deserve a transplant? i never really took care of all my medication nor was i pro active about CF or Do you ever feel like someone else might enjoy the new lungs more then you? like i don't feel like i would be happy even if i got one. and my final question is Do you ever feel that maybe skipping out on a transplant could save someone elses life? like giving up the chance for yourself is giving another person a chance. i would love some answers from everyone im struggling very hard and maybe a few of those answers could make me feel better about my own choice.
Click to expand...

Hey FFX... Your questions are all very valid - and valid concerns. But I find it hard to believe that any of us don't deserve a second crack and a potentially much better life.

As CFers - often we've been dealt a crappy hand in life. Some of us are crazy pro-active about our health. Some of us are not. And either is really OK - it's a personal thing. Yes - we might admire the person who is busting their a$$ at keeping in good shape. But, until we walk a mile in another's shoes - it's not fair to judge someone who might not have. And - it doesn't mean that latter person doesn't deserve a chance. (If it's a compliance issue, and it's believed that the person will be non-compliant post transplant - that's a different story and will flush itself out while trying to become a transplant candidate. If it's believed that someone will be non-compliant post transplant - then where you're going, that lungs might be wasted on you, could come into play... I don't believe that to be the case with you...)

And yes - the lungs you "give up" might go to another and save their life. But are they really, truly more worthy than you? It's a gesture of sacrifice - but there may also be a lot of good you could do if you were here... And some of that good might just be living an easier life for a while...

You might not be happy - but you might. And you're going into a less happy place now. The likelihood that you will be happy, or at least much happier is quite strong.

It's not as easy a choice as some might imagine. It's a choice of life, and an uncertain-but-likely-good life, over death. And sometimes people forget that death is a valid and acceptable choice. Sometimes we're done - tired and tired of being afraid - and that's OK. But life can be pretty amazing. I hope you take that route - but I'm OK if you choose differently.

Love, Steve
 
beautifulsoul

beautifulsoul

Super Moderator
Great read! Thank you for sharing! I had my transplant in Pittsburgh. Not UPMC but Children's because I was only 15 at the time. AMAZING group of doctor's there. Stay Strong! It's a long journey but one that is worth every minute.

FFX - These are good questions to talk about with your CF social worker/therapist as that is necessary to do while being evaluated for transplant. They want to make sure you are choosing the right decision for yourself. Many people pre-transplant have these same questions as you do. I know I did. Everyone deserves a good life. No one should choose life simply because they think someone else should have it. Everyone is equal even though in today's society that's hard to believe. Everyone has hardships in their lives yet still choose to live beyond it. That doesn't mean it's not worth it to keep going. Much love,
 
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Cale Gilley

Guest
where is the like button that was good. I agree the negativity from transplants needs to stop and be kicked out lets talk about the positives.
 
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kittencaitlin

New member
Wow, thank you all. I hadn't checked back on here in a while. I am glad everyone liked it. Steve - thanks for sharing your story - sounds like an incredible one and you seem like you have a really great attitude and spirit towards life. we used to have a stair climb at the hancock in boston! i am not sure why they stopped doing it. i would love to do that some day. i look forward to all of it for myself as well -- sometimes i feel so eager for it to happen, i wonder desperately if it ever will, and then i just try to let myself surrender. 3 years must've been agonizing. i can't believe its been over a year already, i never expected to wait this long with the new scoring. imported, cale, amber - thank you too! i feel such a sense of positivity going forward that even though i am scared, aware it may not work out, and aware it is hard, i feel like there i only one choice to go but FORWARD.

FFX - steve and the others said it well. ultimately it is a decision for you, that you are free to make. i have grappled with the idea of "deserving" a lot, in many senses, not just transplant. even just the language we use in day to day life -- "treat yourself, you deserve it!" ...that kind of thing. its a strange concept, to try to decide who deserves what -- a rather futile undertaking i think, or to do things or not do them because we do or do not deserve them. one really never knows where any particular path will take you, good or bad. we may think we deserve something good, yet that thing may end up hurting us, you just never have a real certainty in life about that, so guiding your life around that idea seems beside the point. at least, thats how i choose to see it. i believe we all have an instinct that we can tap into, that tells us what feels right for us, whereas "to deserve" is just a guilt's cousin. you never know someone else's story, and making your decisions based on what other people may or may not need, doesn't seem to jive. whatever you choose, do it because it feels like something you really want to take on, or at least an unknown you are willing to venture into, with confidence. there is plenty of unknown in life anyway, especially with transplant, you can't organize it all and magically make it all "right" for everyone, but if you do what's right for you, i feel like you're on a truer path to living the right life - whatever that may be.

good luck, its a trippy road. as the others will tell you i am sure, and they've been through it. i've been waiting for 15 months now, and month 15 is different from month 10, from month 6, from month 1, from before being listed. i feel like everything changes rapidly, and its a learning experience like no other. keep that in mind. you never know what you could do with it.

Caitlin
 
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kittencaitlin

New member
Hi - I only just saw this post, sorry! I'm still waiting :) and my FEV1 has consistently been 20-22 for the last year.

I was listed in April 2014 - I think it was like 20. I'm pretty sure my lowest ever was 18-19. Honestly at this low level it is all kind of the same, and they change even with different machines and centers. (boston via upmc where i am listed). Before I got sick to the point that I needed to be listed, i was hovering around 30 for a couple years, not needing oxygen during the day. For about the last 6 months before i started using oxygen full-time, i probably could've benefited from it, but it was that interim period where i still was not SICK ENOUGH to know that i was truly going to be listed. Now at this point I could not remove my oxygen without desat-ing and i assume, eventually passing out.
 
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