|The original version of this page can be found at : http://www.healingwell.com/community/default.aspx?f=25&m=3897636|
|Posted By : cable poodle - 8/14/2017 2:50 PM|
|Hi everyone, it's been 5 1\2 years since my husband's successful transplant at Pittsburgh VA medical center. He is doing great, and his only issue is now he is highly diabetic. I now have e a very close friend that has Hep C , liver cancer, and is stage 4. She is a new member to this site. Can anyone or the moderator post the website info for tracking your status on the list, and also advise how having cancer advances you on the list.Thankyou in advance. I have e referred many people to this forum, because the information and people here have me strength and hope during my. caregiving of my husband. It's a wonderful site !|
|Posted By : ppm guy - 8/14/2017 5:51 PM|
|hi cable poodle and welcome back,|
great news on your husband
the exception points revised on 10/8/2015
after 6 months points are given every 3 months starting with;
at 6 months you given 28
at 9 months you rise to 29
at 12 months 31
at 15 months 33
then capped at 34
if a patient needs immediate help they may petition the regional review board.
I will email our moderator, who I think you know. She is more knowledgeable on the TP process.
be back soon
|Posted By : MamaLama - 8/14/2017 6:37 PM|
|Hi CP...long time no hear. Glad things are going well. Mike was May 2011, so he has been well a long time. He was cured of Hep C in 2014 and has had a heart valve replacement done as well...all successful. He has had 5 major orthopedic surgeries since TP and two incisional hernia repairs. The guy comes back like the energizer bunny. He walked 5 miles this morning, played 18 holes of golf Saturday, and does light wt training and stretching every day. I am amazed. He started to gain wt again (was 250 before he got sick, 150 at transplant and snuck over 200 again this past year, so is now losing on purpose, not sick...no sense in getting fatty liver after all that.|
The statistical information that is available is HUGE. I'd try https://www.unos.org/ to start. Wander around the site and once like it to begin to understand the regions, the criteria, what wait times do, which blood types are moving forward, some ever see if other regions are getting more organs and moving forward more quickly. Remember some folks moved to FL and AZ to get faster organs. One of our members moved for the near term to New Orleans because she found a doc she loved. And living in NY was going to be a long long wait. The centers themselves have lists about which insurances they take so you can figure out what is best to do.
ppm guy gave you the info on tumor points. It was the tumor points that put Mike over the top way back when.
There is a two edged sword on tumor stuff, though because you can lose your eligibility if the sum of the tumors is greater than x cm. At one time it was 5cm, but I have not checked lately, so you need to research that. They can do an ablation procedure to reduce the size of tumors. Mike's brother has done that a couple of times. But his MELD is too low for TP and he is not really ILL. So he is not chasing the TP route.
Let me know if you need help with searching the data base. I haven't been in there in a long time and it looks like they have made some improvements...but I'm pretty good at stuff like that so email me, it is in my profile if you need me. Use your screen name in the header so I know it is you.
I haven't been posting much this past year. Had some med stuff myself and it set me on my ..... Feeling better now, but having big semi annual screening next week... I fly from Florida to MD Anderson in Houston for my stuff...closest specialist in my category. I feel well, so I am assuming I haven't relapsed. Fingers and toes crossed.
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.
Post Edited (MamaLama) : 8/15/2017 7:41:48 AM (GMT-6)
|Posted By : cable poodle - 8/14/2017 6:56 PM|
|I remember about Mike, he was transplanted in Miami FL about 6 months before my husband. It brought me hope. The VA in Pittsburgh is amazing! My husband is great! Of course this has changed our lives in many ways. All for the good! I'm back again for my friend, who is at stage 4 and has transplantable cancer through Shands Gainesville...she. Is at evaluation this week.|
Thanks for the info. I remember cancer moves people up the list faster, but couldn't remember the process. UNOS is where you can track your status. It's all coming back now! TTYS! Good luck in Houston!
Successful liver transplant Feb. 8,2012 at Pittsburgh VA Medical Center. Could not have gotten through it with out God, Family and Friends, and the "Healing Well" website and Forum.