Interested in how other caregivers survive

Hi everyone, I’m so grateful to have found this space for caregiver support. My 31 yr old husband is currently in the ICU (for about 2 months now) awaiting a liver transplant. He was just approved by the hospital MRB team on Friday. I hope to get more information Monday as it’s been the weekend and I have many questions. I have been very stressed out and overwhelmed, as there have been many complications so it has been quite the rollercoaster. I know I’ve been neglecting myself, I am finding it difficult to eat, sleep, have gone on FMLA for work and attempted to work last week but it was too much so I decided to take next week off. All of our family is located all over the country, and we are young and do not have children, and he had also isolated himself the past few months so there is a lack of social support which has not helped me with feeling a heavy burden. The what ifs are frightening, the medical team/social worker/hospital in general has been lacking communication and when I do get information it seems conflicting or like I’m not getting a straight answer much of the time. And he is at the “top transplant center in the country” according to their outcomes, but still grateful for everything they have done so far to care for my husband. Also, how do you find the time? It’s like I just got a new full time job dealing with all the paperwork/medical decisions/coordinating caregiver plans/trying to keep what’s left of his life together while still maintaining a semblance of my own life. And I’m angry because I was lied to by him and this was completely preventable (Tylenol, supplements, and alcohol all contributed to end stage liver disease/liver failure). I don’t know how to do this, or if I am even capable! We just married 2.5 years ago and this was the prime our lives. Now it’s permanently damaged/changed. Thanks for reading, any feedback is appreciated and I’ll continue to read here to keep learning.

@mariancauwel welcome to Mayo Clinic Connect. I don’t usually follow the Caregivers group but I heard about you from Rosemary, Volunteer Mentor, @rosemarya. She is a real gem and has had two transplants herself (liver and kidney). She sent me your Mayo Clinic Connect handle and post because I am a post pancreas transplant patient (2005). I am currently anticipating a kidney transplant at some point.

I love transplant stories and am truly committed to the process. In regards to what to eat upon returning home after the surgeries I think @rosemarya and @gingerw (another gem) already offered up some great advice. In addition to that I would recommend advancing the diet SLOWLY such as clear liquids, full liquids, soft / bland solids to normal. I say this not so much about transplants but because these are major surgeries. You really don’t want to rush the digestive system to get back to normal too quickly. The transplant team should include a nutritionist / dietician that can advise on details relevant to pancreas and kidney diet. After my pancreas transplant I found that I was very comfortable continuing to follow my diabetic eating plan. I was just extremely grateful that my blood sugars were FINALLY controlled. Prior to the transplant NOTHING worked and I had lots of diabetic complications. Thank God (literally) things are better now.

So are you the future transplant recipient or is Marlo? Where is this going to happen? Are you on a UNOS list awaiting “the call”? This is really exciting! Once it happens things move quickly. It can be overwhelming but we are here and happy to help however we can. I will personally keep you and Marlo in my thoughts and prayers. I look forward to hearing another successful transplant story in the near future!

@cehunt57 Good morning Cheryl, hope that’s correct as I am new. Thank u so much for ur info it is soooo helpful. My daughter Marlo is having transplant, she is on the list, we are waiting, we are so grateful for all who the loving donors and their beautiful families, and I am grateful for this support group, just need to learn system, still not there yet but trying. Thank u for sharing I find such hope in you. We live in Glendale Az, I don’t even know if I am connected to right support group, but I ve found such hope here. Thank you for helping me and therefore I can help Marlo. Blessings.

@brishawn24 ,

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.

I'm glad you found this group, too. I'm more than twice your age, so I apologize if my advice seems out of touch. But, I've lived, loved, lost, and been lied to, too. I know it does get better, eventually. You'll learn here that you are NOT alone. It's natural to feel overwhelmed when diving into such unknown territory. It's hard, it's frightening, it's unfair. I salute you for everything you're doing for your husband. You'll find yourself stronger when you come out on the other side of this. Keep hope alive. Try to know you're working toward happier days ahead. Meanwhile, please keep reading and posting when you have a chance. Being a part of this community will help.

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!

@alone Welcome to Mayo Clinic Connect! You’ve come to the right place. There are many members in your same situation and I’m sure they would be glad to share tips and how they cope.
https://connect.mayoclinic.org/discussion/new-to-this-discussion-group-1/
Maybe this website will give you some help while we wait for members to jump in.
https://www.powerfultoolsforcaregivers.org/
But first, maybe you can tell us a little more about your situation. Who are you a caregiver for and for long? What are your specific frustrations besides toileting and memory?

I am a caregiver for my wife who needs a liver transplant.
Its been a tough journey to this point not realizing what an important organ the liver is. When it shuts down the body no longer filters itself and toxins go to the brain causing encephalopathy, not knowing for the first 2 years why my wife developed instant dementia, till we came to Mayo and meet a wonderful Doctor who told us what was wrong within the first 5 minutes of meeting him.
This is a struggle for me as all of my spouses duties have now become mine. Trying to keep up is a challenge for me. We are so looking forward to moving ahead now with the transplant.

That sounds like a lot to handle. It is good she got the proper diagnosis. Do you know when the transplant will be? Do you have anyone to help you with all of this?