Power2Save Transplant Community

In your perfect world, where would you like to see the advancement of transplant go?

During the Transplant Patient Summit, there was a lot of discussion surrounding the issue of organ rejection, medication adherence, legislation, research, and the struggles that members of the transplant community regularly face. What areas are most important from your perspective and how would you like to see them advance?

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I would like to see the future cover all meds for transplant anti-rejection medications. I have met many people who decided not to have a much needed and approved transplant, simply because they thought they would not be able to cover the costs of the medications along with their regular medication expenses. Costs of medications should not be the determining factor for a new beginning for a prospective transplant recipient or their families.

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Also, I think psychiatric follow up should not be optional to recipients or caregivers. It should be as mandatory as office visits and medication compliance. Many suffer silently at home with depression that goes untreated. Depression affects compliance, this needs to be monitored much more often and with much more diligence.

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Hello again mscush. I so agree with this aspect because receiving a living donor organ is an amazing trip and healing takes place not only physically, but emotionally and spiritually. It is overwhelming to receive an organ, whether that be from a living donor or a deceased. I have had the amazing gift of life twice, once from a living donor and the other from a deceased. Both times were incredibly hard to wrap my head around, but I think the deceased was a much more difficult element to absorb and I can not, to this day, which is 2 1-2 years later, talk about this recent gift of life without crying. Speaking to someone, outside of a family member, is crucial to helping the recipient grasp the emotional and physical aspects of this gift of life. Thanks so for bringing up this topic. JeanAngela.

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I would also like to see more Living Donor Centers and more access to information regarding living donation at all medical facilities, libraries and colleges and universities. Education is key to dispelling myths and inconsistent messages. Too many lives are loss for lack of valid information.

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Thanks so much for sharing mscush! I think that there are many people out there who would certainly agree with you on all the topics you've listed above.

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Greetings mscush. I so agree that getting the information out is vital. When I had my first kidney transplant, a gift from my brother, many years later, our nephew wanted to do organ transplant awareness at his high school as his Eagle Scout project. He had a very difficult time with the school to allow this project to go forward to speak with his fellow students. He had to receive PTA approval. All of what he was doing was coordinated with the NY Alliance for Donation. They put him in touch with a heart transplant recipient. He finally received the approval and I can tell you that the presentation that was given at various classes in our nephews school, were amazing by this very grateful and remarkable heart transplant recipient.

So move avenues are indeed needed to speak about this topic. It should not be considered taboo, but a fact that can help make a difference for so many others. Glad that this was a topic at the conference. Yeah!

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I think the foundational issue is one of patient education which would help in each of the areas you mentioned from that Summit event. There may be enough resources out there already, so promotion of the existing resources esp of videos and issue focused materials like web sites and downloadable documents is the key.

TRIO (Transplant Recipients International Organization), as just one example discussed at the Summit, has undertaken a major 5-year project raising awareness of the higher risk for transplant recipients of cancer. Their web site offers video based practical education and suggested action plans at TRIOwebPTC.org . AST announced at the Summit their new initiative of creating patient focused educational videos which will be coming out shortly, a new direction for that society to undertake as they engage more with patients as an extension of their mission. Certainly the recent Transplant Patient Summit in Washington DC sponsored by AST is another example of how patient education spans the key elements of all things patients find challenging.

So I would offer education as the key area to promote and develop, addressing with that the other important issues mentioned in this lead post.

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Thank you BetterKidney4Me & GleasonJim for sharing these important points. These are all incredibly important topics, so we need to work together to harness the power of numbers to push this all forward. To your points, a lot of this information may already out there. I'd encourage you all, and anyone who may read this, to please forward over any information that may have helped during your journey, or that you feel could be helpful to someone during their own. (rmassi@myAST.org)

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