Liver transplant - Let's support each other

Maw90455, How r u doing. I just saw your diagnoses. I too had NASH/cirrhosis. LTP a little over 2yrs. I was just think about u.

Hi Jackie,
I to am so sorry u were treated like this. Unfortunately liver disease is a sneaky one for sure. I hope u r feeling
better.😊💚 I had my LTP over 2years ago. Living my best life, so grateful for my donor family.

Unfortunately, many doctors today are just trying to get patients in and out of their offices and not thinking about the patient-I hope you are feeling better and stronger each day!

Hi, Yea..he was my primary dr, I at times cant let this go,,I feel like going to the president of the hospital he is on staff with...which is near by. Don"t want to
see him do this again...anyway. Went to my gastro doctor with bloodresults and
she saw my symptoms...purple marks on body that I did not cause..my doctor told me they were marks from age related...my very swollen legs and feet..
my doctor said elevate them and wear compression stockings..itchy rashes..
tenderness on liver,,she sent me for mri with contrast and tumor marker..
came back confirmed chirrosis and a tumor. She immediately sent me to Mt,
Sinai liver dept said they were the best she sent patients there before. Made sure that hospital saw me righ away, And they did,,, end of story, This gastro
dr. is wonderful and saved my life twice....love her,,,hate him ..idiot!

Jackie, I knew that you had a difficult experience with your transplant, but until I read this, I wasn't aware of the background and unsatisfactory medical care that you had received. I feel your anger.

Jackie, How did you get your diagnosis for your liver? Who referred you to a transplant center?

Hi MAW. I had my liver transplant 2 yrs ago. When I was diagnosed
In January 2020. The liver team knew from tests I was in need of a new liver. Total chirossis
Then tumors cropped up but doctors took care of them. There would only be more in future. Till the date of operation I went thru hell. But my medical doctor who I saw for over 7 yrs. Did not pay
Attention to my symptoms. Signs on body. Blood tests.never sent me for biopsy just maybe..I could of gotten better with treatment..but because of him I'll never know. I hate his guts!

To members of this Liver Transplant Support group -
If you have not taken the opportunity to scroll through the 28 pages of Transplant support discussions, I have selected some to share with you. If you see one that looks interesting to you, just click on the link, and you will be taken there. To direct a question to a particular member, include their @name.

- It's not all about the MELD Score
https://connect.mayoclinic.org/discussion/its-not-all-about-the-meld-score/
- Transplant Caregiver Advice: Got Tips to Share
https://connect.mayoclinic.org/group/transplants/
- Pre -Transplant Diet and Exercise Ideas
https://connect.mayoclinic.org/discussion/pre-transplant-diet-and-exercise-ideas/
- Transplant Evaluation - What to expect
https://connect.mayoclinic.org/group/transplants/
- Waiting for the Call: What needs to get done at home before you go?
https://connect.mayoclinic.org/discussion/waiting-for-the-call-what-needs-to-get-done-at-home-before-you-go/
- Transplant Blog (Articles and features written by Transplant staff)
https://connect.mayoclinic.org/blog/transplant/
@ajdo129, @klm3, @jlvr, @myfablife, @katebw, @jackie421blfdgurl, @darring1, @mikesealy, @firecat, @maw90455, @valbob, @scooterbill, @jeanannd, @crystalfaye, @parrot53, @silvergirl36, @arqui02000, @sarah82

Hi klm3. Good idea to get local caregivers even if your family can come a few days after the surgery to be with you for the long recovery period. The only time I cried was when I was going into transplant surgery by myself. Would have liked my hand held going in. Fortunately I was pain medicated so pleasantly dozing off with a great cheerful nursing staff that helped me through the first few days after surgery. Barbara aka ajdo129 the code for whoever my donor was

Thank you, ajdo129. Wow, that was quite a series of events and I'm glad it worked out for you. I do need to ask a few other possible local caretakers that live in the phoenix area near me - my backup family members are in California and the east coast. I did create a will and I've kept my family informed of my wishes and who gets what. I also gave them the info of every company who will need to be updated. I am going to set it up where I can donate my body to science, if I can't do that I will have my arrangements prepaid. The info helps, I guess I'll just stay ready and live my life day to day like normal.

Hi klm3. In January 2022 I was put on transplant list as inactive but level 6 MELD score because I had to go through 36 rounds of chemo and radiation for my bile duct cancer which was blocking both ducts just before the intestines. I had 3 ERCPs (Nov, Dec, Jan) to place stents for the bile to flow and to gather cell samples. Before radiation I was told probably September or October for transplant if all goes well.
I had to wait 1 month for a laporotomy in March to be sure the cancer hadn't spread to any neighboring nodes. At this point I was expecting a transplant in a few months June or July.
The Friday night April 17th I got a call that my MELD score was 26 and to expect a transplant soon. Of course I thought that meant in a few weeks.
Sunday April 19th I got a call from the Donor Procurement Team that a brain dead patient was a match and that Monday the 20th the family was taking the loved one off life support.
That Monday at 5 p.m. (72 hours after learning I was a MELD 26) I was told to get to Mayo by 6 p.m. Fortunately I had been renting an apartment just down the street since January for easy access to Mayo. Tuesday April 21 at 2:20 a.m. my cousin in Nogales AZ (primary caregiver) got a text from the surgeon "Old liver out. New liver in."
No one can predict when a match will be available. I was fortunate. I saw pictures of my old liver and still can't imagine how I survived.
I will say the sudden turn around caught my 2 caregivers off guard for we were expecting a later in the year transplant. One caregiver was in Italy and the other had to cancel a trip, regroup for a few days before she came up to Phoenix. Fortunately my friends in Tucson rushed up to the apartment, fetched my dogs and their gear and returned to my home in Tucson where another friend house and pet sat for the 6 weeks post surgery period.
When you become a transplant candidate you give up all control for planning so now is the time to set up flexible contingency plans for what needs to be done in the future. E.g. I revised my will; found someone to love and take my dogs in case I died; notified the vet of this possible change; and notified others that would need time to prepare in case I died.
I guess I am saying expect the unexpected. Transplants are miracles and miracles do happen.
Hope this helps, Barbara