@lexiopo I found it interesting to see which centers were doing the most. I do believe the Mayo in Minnesota was near or at the top and was surprised to see that my center, Mass General, only had one living transplant. The other hospitals in MA that do them both did more than MGH. I must say though, I positively loved MGH and I feel so cared for by them. When anything is wrong they are contacting me and we are working things out, such as my current creatinine level. They are modifying my medications with forethought regarding my knee replacement in October. Apparently the new med is not as friendly to healing as the other one. There are pros and cons to all of them.

If you are on Facebook make sure you connect with Compare Transplant Centers. They post information frequently about statistics etc.
JK

Hi @lexiopo,
I'm sorry that you have not heard from the transplant department yet. You can contact our living donor teams via phone to be sure they received your form and find out your next steps. Here is the link with the contact information: http://www.mayoclinic.org/departments-centers/transplant-center/contact-us/occ-20209784. Please choose the Mayo Clinic site (Minnesota, Arizona, or Florida) you wish to donate to.

If you have further questions, don't hesitate to send an email to Kristin in our Minnesota office at transplant-rst@mayo.edu.

Hi @lexiopo. In addition to the resources @rosemary @contentandwell and @colleenyoung recommended, I wanted to also suggest the Scientific Registry of Transplant Recipients (SRTR). SRTR maintains outcomes data on every transplant center in the U.S. We shared some tips and tricks for navigating their site on our blog a few months back – check it out: https://connect.mayoclinic.org/newsfeed-post/five-things-to-know-about-the-scientific-registry-of-transplant-recipients/. Also, if you do end up wanting to find care closer to where you live, Mayo Clinic’s campus in Jacksonville, FL has one of the largest liver transplant programs with some of the best outcomes in the country. Best of luck on your journey!

@lexiopo - I'm just catching up on emails. I'm so sorry to hear of all the near misses you have had lately! I can't imagine the stress you are under and the fatigue you must be experiencing. I can hardly judge your husband for his actions when I'm overweight which will make my transplant and recovery harder. We all have some patterns of behavior that are less than ideal. I'm also supposed to avoid caffeine (it makes the cysts on my kidneys grow faster) but I take sips of my husband's about once week.

Have you made contact with the transplant team yet? Does your husband have some support, other than you, to stop drinking? Perhaps a sponsor from AA? You can't bear all that burden yourself and someone who has walked in his shoes might be able to give both of you the support you need.

Hi Lexiopo,
I too am in a similar situation. I returned from Mayo ER on Monday after a 3-day stint in ER and two week of classes for my transplant. I am now waiting for a phone call to see if I make it to the list. I have a MELD score of 24. Good luck to you and your husband!

I was deferred - they claim I can't afford the meds after. 🙁

@davebarnes, I am sorry to hear this. I will continue to pray for you and your wife.
I want you to know that you are always welcome here to talk with us, to ask questions about your health conditions, and to receive support from all of us.
Rosemary

@davebarnes - I'm so sorry to hear this. I am crushed. Does deferred mean they will consider a transplant for you in the future? It was always my understanding that the government paid for post transplant meds for five years following a transplant. I wish I had words that would alleviate your pain at this time. My prayers...

@daebarnes I take it you are not on Medicare yet, you do look too young for that of course. With Medicare the immunosuppressants are paid for through Medicare B, we rarely have to pay anything for the drugs.
So did Mayo give you a plan to bring you forward?
JK

@contentandwell - Thank you for answering my question about immunosuppressants being paid following a transplant. That puts me out of that benefit (just turned 50) but explains what I heard.

You might want to resend your comment to Dave Barnes because you spelled it incorrectly so he might not get notified and the information might be helpful to him (although I would hope the hospital would have told him these things).