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.
Thank you!
Hi @klm3
My first transplant was through living donor. I was 17 years old and my donor was my father, he was 40. At that time we were no where close in height. I know the size of the organs matter but im not sure it has anything to do with height. My second donor although he was deceased he was also much taller than I was. He was 18 and i was 37.
I hope this helps a bit.
All the best with your consultation and I hope your surgery goes well if you decide to go ahead with it.
Thank you!
My recovery went really well. Im forutnate that i didn't have any major issues. The regiment was hard but i was determined to do what i was told. I have been working out once i got the go ahead from doctors. My eating habbits definetly chanhed after the second surgery. I was on a strict diet and it helped me in the long run stay away from Junk food. I have no desires for it now. I was also diagnosed with Ulcerative Colitis and we use Prednisone to control flairs so my weight fluctuates because of that. I enjoy going for jogs now, i try to get it done 3 times a week.
I thank God everyday I wake up to a new day. We don''t know when our time will come but i'm am continuosly grateful to have both surgeries go so well.
Thank you for the Welcome!
My first surgey was done by a living donor. My father gave me a piece of his liver and i was blessed that have that for 20 years. My second surgery i got both Liver and and Kidney from a cousin of who passed away. It was a true miracle how fast the second surgery happened. With in a week or two of being told I needed a transplant I got a call one day that my cousin's parents wanted to donate to me.
I was also diagnosed with PSC. Its wonderful to meet someone else with the same diagnosis. I'm glad things have been working well for you. I pray it continues.
Jinja
Hello
You survived two transplants and that is just amazing.
Its not fun, the processes one has to go through after surgery.
It is very regimental and to the point and no deviations.
I had my transplant almost 4 years and 4 months ago. I am still around not sure how long, but I dont think about it. Just take one day at a time and be thankful God let us to keep breathing.
You may want to start a strict workout program to keep your health and weight in good shape. Trust me it is really tough to lose weight.
But you will be ok.
Take care and God Bless
Thank you, @keggebraaten
@rosemarya I don't live too far from Mayo AZ. So...I'm going to hold off on going for awhile since there is really nothing they could/would do for me at this time.
@klm3 - Welcome to Connect! I work with the doctors and nurses in the transplant center at Mayo. For living donors, the beginning first few steps of the process can be done remotely. The potential donors can fill out our online form and if they chosen as a donor, they can have their bloodwork done locally to be sure they are a match and healthy enough to continue the process. Once those results are reviewed by Mayo, the donors can also do any routine preventative care locally that they might be missing such as colonoscopy, mammogram, skin checks, etc. These are things they may already have done if they are keeping up with their preventative care. Once they have their bloodwork approved by the team and are being considered a potential donor, that's when they will need to travel to the transplant center for consultations and testing. The transplant team needs to meet the donor in person to assess their health and willingness to donate. So in short summary, some tests can be done at home but generally the consultations need to be done at Mayo. I hope that's helpful information for you. The team will go over all those and other details once you are approved for transplant.
@klm3, Good Morning. I commend you for your self advocacy and for seeking answers about your current health concerns. There are other things besides liver disease that can affect the liver. Right now, is sounds as if your doctors are looking for a diagnosis for your elevated lab results.
Living organ donations are becoming more and more common that they were when I was waiting for one. For example, my original transplant center in KY did not perform living liver transplants until a few years ago.
I transplanted at Mayo Rochester. I can assure you that the patient/caregiver education at Mayo is fantastic. I hope that your upcoming testing will go well for you. In the mean time, in the words of my GI - do healthy things like: remain active, develop healthy eating habits, avoid alcohol and over-the -counter meds/vitamins/supplements w/o doctor advice, keep all doctor appointments and lab schedules.
Will you be traveling to Mayo AZ?
@rosemarya Thank you for your advice. And I've read @jamesduaiswamy post as well. I did call the local Phoenix Mayo and was told that I would have to go through the process of being put on the transplant list and then we could go through the living liver process. It was a transplant nurse I spoke with.
Right now, I guess I'm healthy enough to not be on the list and I got good news today that my MELD dropped down to 11 (at one point in September it was at 20). All of my conditions are cirrhosis related but nothing that would put me in consideration for the list. I have a Hematologist who is going to run a test for Leukemia but I really don't have any symptoms of that that can't be attributed to my liver health. I was just hoping to get some of the evaluations out of the way and not do the transplant until a few years later, as oppose to what I must do now - wait. I understand donating part of your liver can be difficult and many probably don't know that they can donate while alive but I'm surprised by how little living liver donations occur.
I don't have any questions about evaluation prep but thank you. My questions are mainly to work out how and where the out of town donor would get tested. And, I was told that they would go over cost and insurance at the time of an appointment.