Amount of time to see Transplant Team

We are working with Rochester Hospital

I was dx 2021 with Alcoholic Cirrhosis and then maybe 2 wks later they dx the PBC. (initially my Hepatologist said I was late stage 3 - but both have most of the same symptoms. Haven't heard a word since that about my stage progression. Makes me mad.

Anyway ... when I started my evaluation period for the transplant hospital I had been reading that the tests could all be done in just a few days/weeks. Mine took about 5 months. I couldn't get apmts. soon enough. (my "everything" is at PennState Hershey EXCEPT my transplant team - that's 2 hrs. away in Philly. So all of that is what drug it all out much longer.
( since February I have received the call 2x but both livers weren't quite acceptable by my surgeon. SOOO search on. LOL) GOOD LUCK!

@artsy0062 I had my liver transplant 4 plus years ago due to acute autoimmune liver failure. I was diagnosed in April and received my transplant in October. I had my evaluation appointment with the MassGeneral transplant team in August. I would have had an appointment earlier but there was suspicion that alcohol was involved, though this is not accurate. After my evaluation that early August, I was given a list of appointments to make to further evaluate my safety for the surgery: dental exam, nuclear stress testing, Pap smear and mammogram, CT scan, and probably other testing I’m forgetting. I met with a nutritionist and nephrologist. I did all of this as fast as I could and called in every favor I could and I felt that time was running out and I wanted to live and feel well again. Those months felt like years but in retrospect it was fast. I did find that I had to be active and bossy in pursuit of my recovery. My understanding is that Mayo Rochester is a strong program. Blessings to you and your family- it’s a lot but worth the magic of recovery.

@terribwyo Pre-Transplant Tough question to answer. I received my Transplant in Utah, I heard the closer you are supposedly helps put you in a higher position in some ways. Out here ETA does matter and you have to be in that zone while on the list and tell your providers if you will not in advance. They have apartments near the hospital not a lot of them but a few, not free but available at a huge discounted rate.
As for renting a place depending on where you are on the list, size and age I believe are all to be considered. An acquaintance in California has been diagnosed with Liver failure about 7-8 months ago. He hasn’t been put on the list yet being told it’s not severe enough yet to be considered for a transplant. Other considerations at least out here is mental health, smoking, drugs and alcohol.
It was about 18 months from my diagnosis till I received my transplant. Then I had to live in Utah for about 6 weeks.
Not trying to scare or deter anyone. Just maybe inform a little when you don’t know what to expect.
If you’re real close on the list to receiving a transplant and can afford to be by the hospital I totally would. Anyone going through anything similar to this knows car rides are painful plus you get the call it’s go time. To be close to the hospital and when you have issues see the Drs or team that will be helping you would be a beautiful thing.

I would say it depends on the cause for the transplant. They will want to make sure that they are giving the transplant to someone who isn’t going to abuse the gift they have been given. From my initial visit to proceeding further was about 3 months but to get on the actual list was about 8-9 months.

@slow1 thanks so much! We just found out that he has been deferred from being added to the transplant list pending an MRI and chemo/radiation. The oncologist told us that would probably happen, so I'm choosing to believe that this means we are headed for the list soon. 😊 My husband is 63, and is an athlete who doesn't drink or smoke or have any bad habits, except maybe cookies (ha ha). He works out and takes good care of himself. When we went to all of the 33 appts for transplant evaluation, every doctor we met mentioned that he doesn't look ill at all. So he has that going for him! He has O-negative blood, which I understand can be trickier to match, so we might be waiting for awhile. I can't imagine making the 6-hour drive while in full panic mode, so we are considering a temporary relocation to Jax when he has been on the list for a bit. Thank you for the advice!

@terribwyo I truly wish you the best.
I received two phone call the first on Valentine’s Day. I believe 2023. Half way there received a call that it was a no go. I really just felt bad that it was Valentine’s Day and that someone had just lost a loved one. I don’t believe a holiday is a good day to receive the call. My second was the night before my almost first date with my now wife. Oddly enough we really bonded over the phone while I was there. We even got married on the first anniversary of my transplant.
The story being is it may come at the most inopportune time but what a blessing in the end. As soon as you’re on the list and close enough the call could come at anytime, don’t try to expect it or schedule your life around it. Both calls I never would have thought those would be the days I received them.

For me I went up for a series of tests including blood, stress, X-rays, scans and walking test. Also met with 3 surgeons and docs then they later meet as a group to discuss who gets added. Then you get listed on ONOS the national transplant org. Depending on where you are at on the list determines when you get a transplant. What is he needing? I had liver and kidney so they gave me a MELD score. Mine was between 16 and 23 for most of my pre transplant time then it went up and my health declined so I moved up quickly and was fortunate to get the treatment soon.

He needs a liver. He had blood work done nothing else. Waiting for a call to do the rest of the work. It’s been 7 weeks. I did call yesterday to get in update. No call back yet. Meld score of 23 at last check

@artsy0062 hoping and praying for things to move quickly