It has been nearly 13 years since I was given the precious gift of life. When I received my kidney transplant I was not only given a second chance, but the responsibility to care for the special gem I carry inside me. I look at this responsibility as an honor. I’ve learned that the more educated and aware of our bodies we are, the better outcome we will have. I recently came across a very interesting tool that I believe will be extremely valuable for those of us with PKD.
Transplant Recipients International Organization (TRIO) has launched a 5-year project to support organ transplant patients to deal with their higher risk for cancer, post-transplant. TRIO created a website with structured educational material and videos to raise awareness of cancer risk for transplant patients.
I reached out to my friend and TRIO President, Jim Gleason, to educate us on this new project, how it came to fruition, his personal connection and what we can look forward to as it unfolds. Here is what Jim had to say:
“The TRIO post-transplant cancer project began with a phone call from Steve Okonek of the TRIO San Francisco chapter. Steve called about a recentTRIO member death due to cancer and his challenge of ‘What are we going to do about it?’ My immediate response was, ‘Sure, what are WE (TRIO) GOING TO DO ABOUT CANCER?!’ After that conversation, the thought just hung there – what can we do? If not TRIO, then who would do something? Calling Steve back, I shared that I had no idea what we could do, but was willing to take on the challenge of finding out what we could do if he was willing to team up to lead that effort. This led to us interviewing several experts in the field and developing a plan of action that was presented and accepted by the TRIO board, taking on this 5-year post-transplant cancer project.
Jim Gleason, TRIO President
The first phase of this effort is the building of an educational website that is now in early stages of research, but will be launched now with content growing over the year and years to come. This is a work in progress, with the website content being developed over time and a formal website design to be undertaken in 2015. Today, you will find the early results of our research with many topics obviously still under development, with more being added each and every week.
As a heart recipient of 21 years, I am personally passionate about this effort because of my personal experiences of early detection and treatment of prostate cancer, kidney cancer and now years of skin cancers as I pass my 20th year with this amazing heart transplant. Each has been just a bump in the road and not a death sentence due to that ‘best practice’ of early diagnosis and treatment, some by due diligence, some by blessed chance and good proactive medical care of very caring doctors and nurses.
We invite you to visit the TRIO post-transplant cancer website, even now as it is under development, at TRIOweb.org (see the PTC: Post-transplant Cancer link on the top right of the black menu line). Here you will find 24 pages of structured educational material and videos to raise awareness of cancer risk for transplant recipients. Once aware of the higher risk, you can learn symptoms to watch for and how to deal with cancers that affect the majority of long-term transplant survivors. By early detection and prompt treatment, together we can save lives and help preserve the quality of this amazing life that has been extended through organ transplantation and the gift of a donor.”
Jim is aware that I am recovering from a procedure to remove skin cancer, and I greatly appreciate the education that TRIO is providing for all of us. The gift of life is priceless and I hope this information helps you care for your gift.
Have you endured cancer post-transplant? What are your thoughts on TRIOS’s post-transplant cancer website?
Very interesting, Valen; thanks for posting!
I’m glad you found this interesting, Dan. You’re very welcome!
i think its wonderful to raise awareness so we or those who got transplants can learn and move forward with caution yet be knowledable…my concern is there are self inducednot Fault so much by the person ,, reasons to getting cancer such as the anti rejection medications long term use..it would be wonderful to get rid of those and make life more pleasant not having to rely on those such a meeting i am going to in madison wis. to work on this issue and also isnt diet play a big part too.. certain chemicals in foods etc feed off and develop fast to make the cancer cells grow..ive done alot of reading on this topic and how cancer can be prevented for the most part anyway.
Thanks for sharing your thoughts, Dominique. I agree, it would be wonderful if anti-rejection drugs could be eliminated. A lot of responsibility and possible side-effects come with immunosuppressant drugs, but that is part of receiving the beautiful gift of life. It is great that you are actively involved in helping with this and also that you take very good care of yourself and your health.
This topic makes me anxious for my transplant recipient loved ones but knowledge is power and I’m very happy to know about TRIO! This is a very valuable resource, thank you for enlightening us Valen!!
You’re very welcome, Julia! I agree, this topic makes me anxious as well, but I feel empowered to learn more on this topic, be aware and do all I can to protect myself. It is an unfortunate issue that can stem from us receiving the gift of life. However, I always focus on the most important thing, that transplant recipients would not be alive if it were not for the transplant, so the price we pay for the gift of life is dealing with some unwanted issues. Everything seems to have side-effects, and our transplants do too because of the meds we take. Together we will get through whatever comes our way the best we can. Hugs!
I have had multiple skin cancers over post transplant 9 years. Luckily I watched for signs before they were too bad. Since changing transplant meds last year, I have not had any! Fingers crossed! Be vigilant because you are not a hypochondriac– the threat is real. Here’s to healthy transplant living! The best gift ever!
Hi Ellen,
Thank you for sharing your advice and positivity. Fingers crossed that changing transplant meds is just what your body needed! Cheers to healthy transplant living!
I’m 8 years post-transplant and have had several skin cancers. I wouldn’t have thought it was possible to change meds at this point. May I ask what your changes were, if you don’t mind sharing? I hope the new course of meds continues to work for you. That’s exciting!
I also have had multiple skin cancers since my kidney transplant 10 years ago. I am diligent about seeing my dermatologist every six months! I continue with a postive attitude and feel extremely blessed!
Hi Dolly,
Thank you for sharing your positive and grateful spirit. Being diligent and taking the best care of ourselves is so important for the longevity of our kidney. Congratulations on being 10 years post kidney transplant! 🙂