What do you wish you knew when your t... - Power2Save Transp...

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What do you wish you knew when your transplant journey began?

IzabellaDOnofrio
IzabellaDOnofrioAdministrator

Is there anything you wish you knew about recovery, taking medications, emotions, side effects, etc?

5 Replies
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While I'm not sure what I could have done differently about it, and maybe they did share informaiton that I didn't rember or pay attention to at that busy time of so much learning about the possibility and upcoming organ transplant, I wish I had known more about the higer risk for cancers and the likely hood of becoming diabetic. For many years post transplant I heard about patiennts developing diabetes, but never expected it would happen to me or that it was so very common. When switched to a less kidney impacting immunosuppressant, it came with diabetes which I now understand so much better. But all said, with great support from the endocrine team, its been 14 years of insulin and finger pricks with no real complications, so not complaining as I am enjoying decades of healthy living despite that issue. As for post-transplant cancer risk, I'm really not sure how much of those issues are just a factor of my advancing age when cancers are more common in general, but certainly science shows us that transplant recipients are at a higher risk for cancer and we need to be especially vigilent to catch them early so treatment can be more successful. As a cancer survivor - prostate cancer out 20 years, kidney cancer out 8 years and onging skin cancers always under treatment - I have no complaints, just wish I had understood those risks up front even if there was nothing at the time to do about that risk.

Thanks for offering that great question. I look forward to seeing how others repond to this.

IzabellaDOnofrio
IzabellaDOnofrioAdministrator
in reply to GleasonJim

Absolutely, Jim! Thank you for your response. So many transplant recipients are at significantly higher risk of developing these additional chronic diseases, such as diabetes and cancers.

This makes someone in my position think:

1. What can we do to help prepare transplant recipients become educated on these risks to their health BESIDES learning to try their best to prevent their bodies rejecting their organ(s)?

2. How can we help encourage transplant clinicians to educate and provide resources to their patients?

Here is some information I found on diabetes after transplant:

kidney.org/atoz/content/new...

kidney.org/content/can-you-...

Here is some information I found on skin cancers after transplant (I wish I could find more patient resources on other cancers):

skincancer.org/blog/after-a...

Thanks for those resource links. As to your comments, personally I have accepted that challenge relative to post-transplant cancer risk education using TRIO to build out a patient educaiton resource whcih is still in process of filling out with about 65% complete to date. Check it out at TRIOwebPTC.org As the next part of this multiyear project, we will be promoting the site to transpalnt programs across the country and we have already learned there is no other resource like this in their tool bags, so hoping to really make a difference in transplant mortality.

IzabellaDOnofrio
IzabellaDOnofrioAdministrator
in reply to GleasonJim

FANTASTIC. I am going to check this out! Keep me updated if you are able. I would love to see how this project continues to progress!

Will do - already, despite not being finished, getting rave reviews and over 250,000 page visits. Any chance we might be able to get some AST support/sponsorship?

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