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I am looking forward to this very much. My doctor has discussed a liver transplant with me. I see a gastroenterologist the end of May. I have inherited Hemochromotosis. I have the gene from both my parents. I have been having therapuetic phlebotomys for around 40 years now. Have non alchoholic chirrosis of the liver. I am very nervous about what the future holds for me. Hoping to learn about transplants. I would like to know what the survival rate is after the transplant. The costs involved and is there any monetary help for transplant patients. I am not computer savy. I do not have a mike on my computer. So I will be listening only.
Replies to "I am looking forward to this very much. My doctor has discussed a liver transplant with..."
@barbret54, You do not need a mike. Your questions related to the procurement can be asked here on this site.
Rosemary
@barbret54 Try to not be nervous. I was also and even wondered if I wanted to go through with a transplant, and then in the last month and a half before I was called things went downhill so when the call came, much sooner than anticipated, I and my husband were elated. Of course there is some discomfort after transplant but that goes away relatively quickly and since then (my transplant was in September 2016) I have been doing great.
I am on Medicare and have an excellent supplement. Basically everything was paid for. Of course that varies depending on what your insurance is.
Good luck with this. From what I have heard in forums everyone who has had a transplant has been ecstatic with their transplant center. The medical staff seem to be wonderful and dedicated at all of them. Do check the reports at SRTR.org for the best transplant centers that are close to where you are, or consider going to one that is excellent like Mayo. There is also a lot of data available on the typical MELD score at which transplants are done in various regions. Mine was in Boston and I was told right up front that I might want to consider another region where transplants occurred at lower MELDs than they do in Boston. Thankfully I somehow managed to have my transplant at a lower than typical MELD for the Northeast region.
JK
Connect
@barbret54, I'm happy you will be joining us. I want to welcome you to Connect. I am a liver/kidney recipient and a volunteer mentor. I want to invite you to visit the Transplant Group Discussions where you can meet others who are liver patients. I know they will welcome the opportunity to talk to you and to share their journeys and to lend you support. You can locate it by clicking on 'Transplant' top left of this page, or here is the link: https://connect.mayoclinic.org/group/transplants/
I want to share a valuable tool here on Mayo Connect! PAGES - "In these pages, there are materials for transplant recipients as well as living donors. No matter where you are in your transplant journey, our goal is to connect you to others and provide you with information and support." https://connect.mayoclinic.org/page/transplant/
Here are 2 newsfeed articles that are included in the Pages that , I think, will be beneficial to you now at the beginning of your journey.
-Getting Listed for Transplant
https://connect.mayoclinic.org/newsfeed-post/getting-listed-for-transplant/
-Top Takeaways from "Transplant 101: Preparing for Your Journey"
https://connect.mayoclinic.org/newsfeed-post/icymi-key-takeaways-from-transplant-101-preparing-for-your-journey/
Let me know if these help. And I hope to run into you again in one of our discussion.
Sending you strength and hope for your journey.
Rosemary