Connect
← Return to Are there any other pre-liver transplant caregivers out there?
Discussion
Are there any other pre-liver transplant caregivers out there?
Transplants | Last Active: Jul 29, 2018 | Replies (195)Comment receiving replies
Hi,
I have a very close friend of 30 some odd years who is waiting for a liver transplant and has sarcoidosis . She has been bravely handling all the associated hospitalizations, setbacks, kidney stones and infections, now bile duct stones and some heart and lung deterioration though she is not on oxygen yet. I fear that she is ready to give up and even worse that her medical team is planning to take her off the list. She has been on the list for 3 years and suffering with other health problems much longer. From day 1 many people in her life offered to get tested for the living donor program but her medical team initially told her that was not an option. She has a great husband and family who are very supportive and she also has a disabled son who loves and depends on her- so she has a lot to live for! I know she is going through something I can never truly understand but I'm not ready to give up! How can I support and encourage her to keep trying and maybe even try a different medical facility while still respecting her decisions?
Replies to "Hi, I have a very close friend of 30 some odd years who is waiting for..."
@jeanene Congratulations on your transplant! I had mine at Mass General in September, 2016, and I too have nothing but good to say about the process and how supportive they were there. I too have very high expectations so I was extremely happy to be about 55 miles away from one of the top hospitals in the country.
@myfriend - I also have liver cirrhosis from Sarcoidodis and not elihible for a living donor. Not many of us out there. I try to do what I can on good days, on other days I rest. I am blessed that my husband is do supportive and that i have an extended family and friends that check in with me. Your non-judgemental presence in your friend's life is the greatest gift. It's hard for most folks to ask for help so a lot of the general "call me if you need anything " go by the wayside. Specific offers of help - taking her child for a day or saying you're bringing over pizza for dinner - will be much appreciated.
Connect
Hi @myfriend
You'll notice that I moved your message to this existing discussion called "Are there any other pre-liver transplant caregivers out there?" so that you can meet others who are supporting someone as they wait for a liver transplant.
Like Jeanene said, your friend is very lucky to have you. As you read through the discussions and messages in the Transplant group you will get a sense of what she may be going through and how you might support her.
Do you live close to your friend?