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Interested in how other caregivers survive
Caregivers | Last Active: Aug 4 11:08am | Replies (123)Comment receiving replies
It sounds like you really have been through a lot. I’m so sorry. What a shock and enormous thing to deal with. I’m not familiar with the transplant process, but I know those around this site are. Is there a social worker you can speak with?
I think sometimes friends are silent during a time of crisis, because they don’t know what to say. Maybe, if they know you need to just talk, they would welcome it. Last year , when I had a medical crisis that I didn’t feel comfortable talking to family or friends about, I got a therapist and that was a very good decision for me. It turned out, I continued with that therapist. I found him by looking at my health insurance’s in network providers.
How did your husband discover the liver damage? It sounds so sudden.
I hope things improve and that your husband’s procedure goes well. I’ll look forward to seeing your updates here.
Replies to "@brishawn24 , It sounds like you really have been through a lot. I’m so sorry. What..."
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I appreciate the inspiration! Yes we have a social worker however he is extremely overworked so he is not able to help much. Also, there aren’t many resources at this location compared to Mayo like the lodging. However he was denied from multiple other transplant centers so he is at probably the only center who would accept him, grateful he has gotten approved and survived through the pre-evaluation process.
I have been attending therapy for years for my own mental health struggles, luckily I have a great therapist and she has been flexible with my unpredictable schedule and I increased our meetings to twice weekly. It does help. I do have friends to lean on but I also like to keep it light most of the time to get a little escape from all the medical stuff here and there. Have discussed though and all have been nothing short of supportive, they just don’t know what to do. I tell them that a hug and their ear is all the help I need sometimes!
It’s unclear exactly what happened, as he is a merchant marine and works overseas for 6-8 months a year where I don’t know exactly what he was doing. But the health issues appeared to start at an overseas hospital July of 2023. He got acute pancreatitis, which was explained to me as resulting from an antibiotic allergic reaction (not sure how true that is now). So he came home and has not worked since. He had been seeing a GI doctor for years due to ulcers and things, I think that is when it was discovered, but he did not tell me at the time. He was first hospitalized and I was made aware of the discovered liver issues in December of 2023. He seemed to be fine after being hospitalized for one week and given one month of prednisone. Then he deteriorated practically overnight, so I dragged him to a different hospital February 7th this year where he was diagnosed with ESLD and advised he urgently needed a liver transplant. Two local transplant centers denied him for evaluation due to alcohol in his system upon arrival at ER. So all the health issues that I thought were just ulcers and GERD, were actually his liver completely failing. I will definitely be checking in here often. Sending good vibes your way!