Liver transplant canceled due to valve calcification: I'm lost

@jmp1234 I’m SO sorry to hear of your situation! What was your transplant coordinator’s response to your question (if you don’t mind sharing)? Which Mayo transplant center / campus are you working with?Perhaps you could ask for a second opinion from one of the other two facilities? Mayo thrives on doing what others have not and are usually up for a challenge. There is nothing like the threat of friendly competition between colleagues to promote inspiration. If that doesn’t help you could inquire about other large teaching universities / hospitals for assistance. I’ve rarely (if ever) heard of Mayo backing down. They are always working toward maintaining the high standard of excellence behind the shields.

Silence. Jacksonville. I shall check Orlando and mobile campuses. Also will be checking with sw in dallas. TY for responding. I just don't get it. I know I can't go much further as is . We shall continue to move forward as best we can.

jmp1234

MD Anderson, City of Hope.
It is hard to believe, and I am so sorry you were told that. I do not know anything about the liver. Did they keep you updated through the year on test, results and possibilities?

Yes they did. Very timely they were. This was literally out of blue, last review of my status before putting me back on unos wait. I had been told 8 days ago to be ready for transplant phone call anytime in next 2 weeks. Ty for speaking to me on this.

Please contact Tampa General Hospital. My husband had a liver transplant there last October. His surgeon was Dr. Diego Reino. He specializes in more difficult liver transplants. Everyone there was wonderful. He was on the UNOS list for 3 months when they called. Please call Tampa. My thoughts and prayers go out to you. Please keep us updated.

Definitely TY

My heart and prayers go out to you and your partner. I have not heard of calcification issues, but I’m not a doctor - just an LT recipient. I had my transplant, live donor, at Northwestern Medicine (NWM) in Chicago. They are a top rated hospital in the USA, and what’s better maybe for you, is that they are a research/training hospital. Renown. It may require travel expenses, but there are so many organizations out there to help you out with that part, and NWM can also assist with that search. I know Mayo-Rochester is an excellent hospital, but I find it peculiar they went “silent” on you. At NWM I had my own social worker throughout my journey, which started November 2022, transplant 5/3/23, and still available if I need her today. At the very least I believe you deserve solid, understood communication.

Please call every hospital in the states, maybe consider going international as well. Unsure if I am allowed to give out numbers, but NWM-Chicago Transplant number is 312-695-8900. The place is like a large airport, but is a well greased machine and this number will get you straight to the transplant team. Google them.

Please don’t lose hope! We are all out here supporting you and hoping/praying you find help somewhere - I believe you will!

Please call.
Again,
312-695-8900

The whole process is a roller coaster ride of unknowns - setbacks - challenges etc. always get a second opinion and you have a lot of opportunities for that from those who have walked this path. I would begin there and specifically ask about the calcification. We are not Drs but we have learned a lot by listening to them and going through. You will go through stay strong keep moving forward. Remember darkness is in the night but Joy comes in the morning 🙏🏽
Trager Transplant in Louisville Ky is another good one. My head Surgeon was Christopher Jones and I actually had two transplants within a week or so as we encountered problems post transplant and had an exploratory surgery in between to try n salvage the first one. I awoke to the Dr saying I would need relisting. Not what I wanted to hear but decided to keep the Faith and Trust them.
There will be another option and opportunity for you.
Pray and seek Wisdom and another Team on the same page that gives you Hope.
🙏🏽

I'm in tears reading this. May the Lord keep and preserve you while providing comfort and strength. You already are strong. Don't ever doubt that.

Silence is rarely an acceptable answer. Are you able to review the documentation about the decision along with information about the calcified value in the Portal? It may not change the situation but should bring some better understanding. If not, try here to get some help.
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Mayo is only one place, as you've read already. Keep seaching, keep fighting, and stay strong.

You are in my prayers,
Dave

TY for the sharing of your experience. Working with tampa general and face to face with jacksonville staff in one hour. Gastro and cardio are calling back in a few to discuss current meds and therapies. Ty