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Are there any other pre-liver transplant caregivers out there?

Posted by jodeej @jodeej, Jan 29, 2018

Hi,
I'm JoDee and my husband is on the registry waiting for a liver transplant. I'm feeling stressed and would love to have someone to talk to that gets what is going on with us. We live 5 hours from Rochester, so I can't attend any of the support groups there and there aren't any near us. Any suggestions?
Thank you!

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myfriend | @myfriend | Jul 26, 2018

Oh- I live within 45 minutes of her.

REPLY
JK | @contentandwell | Jul 26, 2018
In reply to @myfriend "Hi, I have a very close friend of 30 some odd years who is waiting for..." + (show)
@myfriend

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?

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@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.

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JK | @contentandwell | Jul 26, 2018
In reply to @myfriend "No , there is no Mayo clinic in our state . We have a hospital system..." + (show)
@myfriend

No , there is no Mayo clinic in our state . We have a hospital system with a very good reputation about 1.5 hrs away which I encouraged her to transfer to early on and their transplant team is very organized and coordinated with all the specialties. I know she'll have up and down days, I just wish they would at least talk to her about living donor options , which they haven't yet. Thank-you for your replies and encouragement .

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@myfriend If your friend is happy with the facilities available to her then that's the first step. If not she should check the SRTR.org site for transplants centers close to her and specifically look at those whose outcome is either "as expected" or "better than expected". I think there are only 6 in the country with the better designation, Mayo in Florida being one and there are a couple in CA.
She should also check on what the typical MELD score is in her region at which transplants generally occur. That can be influenced by blood type too but with those two criteria she should be able to get a good idea of where she stands and if she would be better off at a different transplant center.
Regarding being a support for her, just be there when she needs someone. My condition pre-transplant was better than would be expected but there were days when I would have really liked someone I could just talk to and express myself. I had people who cared, my husband, my son and daughter, but they really did not want to hear my feelings and fears.
JK

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Moderator
Lisa Lucier, Moderator | @lisalucier | Jul 27, 2018

Good morning,
I know that many of you have gotten to know Rosemary, @rosemarya, a bit in this discussion on pre-liver transplant caregivers or elsewhere in the Mayo Clinic Connect Transplant Group. Here is a chance to get to know even more about her in today's Mayo Clinic Connect spotlight, featuring her: https://mayocl.in/2K25PrL.

REPLY
amyintucson | @amyintucson | Jul 29, 2018
In reply to @myfriend "Hi, I have a very close friend of 30 some odd years who is waiting for..." + (show)
@myfriend

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?

Jump to this post

@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.

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