Liver transplant - Let's support each other

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

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 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!

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, 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!

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 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.

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.

Which of the three MELD score types do I go with?

Hi, @charliepuma, and Welcome to Connect. From the chart that you have attached, I am going to assume that either you or a loved one is a liver patient who is on dialysis. I don't know which score type that you should use and as a patient I have no experience of my own to share relating to it. The MELD score and how it applies to you needs to be interpreted by the liver doctor who ordered it. Only he/she and the transplant team will know of your unique medical circumstances. Does that make sense?

If you are interested in information about the MELD score, here is a link to an article from the Connect Blog Newsfeed:
- The MELD Score: Definitions and Frequently Asked Question
https://connect.mayoclinic.org/blog/transplant/
I am a liver and kidney transplant recipient and I received my transplant in 2009 at Mayo Clinic in Rochester.

Are you in the process of being evaluated for a transplant? or Are you on the Transplant List?
Please let me know how I can support you on your journey toward a transplant.