UNOS – APP for the patient on the transplant list –
- This topic has 13 replies, 5 voices, and was last updated 9 years ago by
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Brenda
Thank you for building a new bridge for me. I have hope and unanswered questions. With this new extended family, I know miracles will happen. Glad to heard your Kenny is doing better. We have to keep everyone spirits strong and real! Hugs to Kenny and your family.
Judy
Oh, Dear Brenda, it is so good to hear from you and I LOVE the good news!!! Kenny is a great poster ‘boy’ for CC with all the hope he gives others with his successful surgery. Yes, Spring is a time of hope and new beginnings.
Judy , I know how hard this is for you at this time. You did the right thing in contacting Cathy, she is wonderful and has been so good to our family, she helped us so much with alot of information and what our options could be. That second opinion that we had with Dr. Chapman saved my husbands life! Last May, after being listed for a liver transplant, he indeed got the new liver !!! I can’t tell you how grateful this family is. We take each day at a time… and it has been wonderful.
Cathy, Keep posting about Dr Chapman and his team so more cc patients can at least have more options.
We just had a follow up appt at Barnes yesterday, they keep a close watch on all of Kennys test and health and I’d say he is doing very good for 69 yr old, I mean ,young, ha ha, . Spring planting is coming right up and he is ready , Life is Good.
Love BrendaThank you Cathy for speaking to me . Your wisdom and passion is well received. I have hope, however you just opened the window higher.
Another angel in my heart.Judy
Hi you can email me with the email link or email me at jrdunnagan@gmail.com or FB me Catherine Sims Dunnagan or call me 618-567-3247. If you want to call you might wait a day or 2 have bronchitis and can’t talk much.
Can’t wait to talk.
Lots of prayers-CathyHow can I speak with you privately ? Would appreciate your wisdom on this matter .
Thank you for opening this door for me .
Liverma88, I am a 51/2 year CC survivor thanks to transplants. I am confused about your post or even more thankfull for my medical team, because I always kept aware of where I was on the list. My MELD score was constantly watched and raised, I started at 26 and was transplanted at 34 in a 5month period and Dr. Chapman thought that was to long. If you would love to talk or if I can help please feel free to contact me.
Lots of prayers-Cathylivermass88….I am glad you brought this up. The subject of referring patients to UNOS was addressed in my presentation at our 2nd annual cholangiocarcinoma foundation conference. If indeed we see additional, select hilar CCA patients accepted in the program, then it would be of great benefit to work out the kinks beforehand.
I also wonder whether you would be so kind and repeat your postings in the below section:
Surgery, Resection & Transplant Treatment Options
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=41Thanks for considering,
Hugs,
MarionAND YOU ARE SO RIGHT! Patients have enough to contend with and anything anyone in the Medical field can do to help ease the journey should be done to help ease their way. Let’s see what others have to say about this when they weigh in but I still like the idea of CC on an APP.
I am on the transplant list for a liver with a low MELD score since October of 2014. I have not been notify from UNOS with a phone call or mail. Apparently, I’m in a Black hole in their database. Sad to think this is their protocol. I have no documentation from UNOS, 6 months later. I have the resources to read the daily updates from their website, which I check almost daily. We should have a “Higher Expectations” for this organization.
I believe they could be more PRO-Active with this major challenge newbie’s encounter when becoming part of UNOS listing program. This is a reason for the patient’s to become more knowledgeable with their own medical destiny. It’s the the patient who agrees and disagrees with their medical resources available to them. I hope this changes for the future of our transplant friends and family. I not venting, I only looking for more Accountability from the Organizations which we expect “Life” changing results.
Dear Liverma, when my husband was DX 10 years ago with CC we were lucky we could even find a Surgeon who did the surgery for this rare Cancer. The Medical Field hardly knew a thing about CC. I know things move very slowly but we have come a long way in 10 years. What makes CC still hard to diagnose is that there are no warning signs and in some cases DX is not made until the Cancer is well on it’s way to destruction. We even have a Board of Surgeons and CC ONCS now who have all joined our site. All tops in the treatment of CC. I think your idea of an APP from UNOS is a great one. Perhaps someone can give us an answer for that suggestion.
I would like to see a APP from UNOS – when a person is on a transplant list for a organ. I think if they could follow the allocation process and the details along with the Medical Industry, that would give the recipient and their families peace of mind.
Obviously, since Cholangiocarcinoma is a unique and RARE disease – I hope they ( the medical industry) would and could create a larger database to find cures.
I know cancer is a challenge for the Best of the Best, but network and researching could help eradicate this medical mystery. I believe in miracles … and hope one day soon we have this opportunity available to us and our family. Make the unknown disappear, to help this disease become manageable and curable !!!
Interested in your thoughts and comments… Our Voice needs to be heard!
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