Liver transplant - Let's support each other
What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?
Interested in more discussions like this? Go to the Transplants Support Group.
Congrats Mr Parker! I have had my liver for just over two years. The transplant team in Phoenix saved my life. I was fortunate enough to get a transplant on the day I was listed! I am so grateful to the people who made my life whole again. Mayo was recommended by someone I talked with at UNOS or I would not be writing this now. I was diagnosed with HCC which was treated with radiation prior to the transplant. This has been a difficult journey for me and my caregivers. Everyday is a gift now. You find out who really loves you because this is not easy. Scans every 90 days, weekly labs, pills, pills, pills. Everolimus, no Tacrolimus. Oh geez your kidneys are getting hammered by the drugs. It can be a roller coaster! My wife of 14 years said “I didn’t sign up for this”. We are splitting up.
Now we get to deal with this SARS-CoV2 pandemic? I have been vigilant even prior to COVID-19 by self quarantine in my vehicle until my appointments. LabCorp and my local doctors are using the same criteria for face to face procedures or telemedicine. I was worried about catching the virus since we have suppressed immune systems. I am not as afraid of contracting the virus as I was because immune suppression could be a positive thing. I have read mixed reviews on this one. The people who fair well seem to have a controlled immune response. Someone help me out here. I am taking every precaution but many misinformed people who are spreading this don’t seem to care. It’s almost inevitable that eventually we will contract this virus unless a vaccine or treatment is found.
@athoub, We look forward to hearing from you. You are welcome to read along, and to join in at anytime. There is no time limit or activity requirement. Mayo Connect is a safe online way to share our experiences, and to ask and answer questions to support others who are like us. As you get more familiar with Connect (you can refer to the Get Started link I sent you) you will see that you can easily move to any discussion topic that interests you.
As for myself, I received a combined liver and kidney transplant in April 2009 at the Rochester Mayo Clinic. I needed a liver transplant because of Primary Sclerosing Cholangitis (PSC) that resulted in liver failure and acute kidney failure.
What brings you to Connect?
It is crazy. No one around here wears them. It's so frustrating.
@jodeej
I am so glad that everything went well during Tim's visits. That's always such a relief.
I am amazed when I hear how many are not wearing masks. Around here virtually everyone is, but I hear when you go up north that is not true. They have not really been hit at all up north though so I suppose that's why.
I think it's rather ironic that initially, they were saying that masks did not help and now they are really pushing them. I never agreed with them not helping since my transplant team always told me to wear one when flying or in crowded places. It's simply obvious that they have to be of some help.
JK
thank you for guiding me to this awesome group ... soon I will share with you all my story and I hope to be an active member
@contentandwell Iowa was doing so good and now we have hot spots again after reopening. I noticed while traveling this past week that there really wasn't anyone wearing masks except in Rochester. We wore ours except when walking back and forth and while we were at the lake house and of course when driving.
Good morning! Our trip was a 1 1/2 day. We arrived back home yesterday evening. All of Tim's results came back great! He's feeling really good. I'm so glad we got to stay at Gift of Life while we were there. With his Alzheimer's it's nice to have a familiar place for him where he feels so comfortable.
We had burgers and bunny cake at the Honker this time. My favorite is the pork chops with applesauce and rice, but they haven't been able to get pork and were out of rice. I almost ordered the walleye. I thought the almond crusted sounded really good.
Our weekend trip to a lake house in Minnesota before the appointments was so relaxing. It was fun to have all the kids together and just relax and play. It was much needed. I even got in some morning yoga on the dock!
Blessings,
JoDee
@athoub Welcome to Connect. I see that you are a liver transplant recipient. I invite you to say Hi and tell us a little about yourself.
Can you scroll back a page - that is where you can see the most recent posts.
Rosemary, my son said nothing is cast in concrete, it depends on the situation. Since things are surging once again I really hope they will cancel going. The south is not doing well and now CO has crossed over from doing well to not as well. NH has done surprisingly well.
It's interesting that the states like NY that had the worst numbers are doing very well now. Obviously the population there has been diligent following the precautions as they have in MA too. It's so crazy that some people think of wearing a mask as infringing on their rights!
JK
@rosemarya My last labs had two vials. One was for Cellcept trough level and the other was for the BK virus. I’m still waiting for the results.