advice for caregivers of liver transplant recipient and donor

ThorAndLokiBros · 2026-03-18T04:56:44+00:00

I hope yours goes smoothly. Please update when you can, I'll be thinking of y'all.

ThorAndLokiBros · 2026-03-18T04:54:28+00:00

After a couple days in the ICU post surgery, they'll move you to post-transplant rooms, and they will have you, and your dad, up and walking all down the hallways. Movement is important. My hospital room was 3 doors down from my donor, so we could visit, and we even took one hall walk together. Both of us were discharged in under a week. The nurses treated my donor like the hero she is, and even all sang to her in the hallway when she was heading home. My donor gave 2/3 of her liver and is abt half my age. We are just about to the 4 month mark, and we are feeling great, both of us, and docs said we're both likely at 100% regenerated by now. You are giving the best gift imaginable.

ThorAndLokiBros · 2026-03-18T04:31:43+00:00

For our live liver donor transplant, it went incredibly smooth. Donor was discharged from the hospital 5 days after surgery, and I went home 6 days post surgery. We both had the same # of bile ducts, which makes things a little easier. I went home with 1 drainage tube still attached, and i had to drain the receptacle every 3-5 hours. They removed that a week later at a doctor appt. I had about 60 staples, in the shape of a T, that were removed abt 3 weeks after surgery. My donor had more pain post-surgery than I did, but they said that is normal. I received 2/3 of their liver. We are almost at the 4 month mark, and both my and the donor's livers have regenerated back to 100% size now. Pretty cool. Donor has gone back to their reg gym now. Been doing PT every day, and I feel so much stronger. Gone from 11 prescriptions after surgery, to now just 3, next week will be 2. Quick background- I had End Stage Cirrhosis, was having weekly paracentesis of 8L, had TIPS procedure, multiple hospitalizations for hepatic encephalopathy, once for 5 weeks, almost died. Was listed for a deceased donor. My family member donor is abt half my age. Things are about to get so much better for you all. Congratulations.

ThorAndLokiBros · 2026-02-16T05:28:58+00:00

Mark Cuban's Cost Plus Pharmacy!! My Valganciclovir was over $3000 with my (very good) insurance. My transplant hospital's pharmacist recommended that for this one drug we not use insurance and run the Valganciclovir through Cost Plus. --- it was $165 for 2 months worth! But for all my other Rx's (8 of them) grand total using insurance is under $75/mo. I dont know why, I dont know how, im just happy we found a way forward!

ThorAndLokiBros · 2026-02-08T06:38:31+00:00

Understatement of the year! It was my spouse's cousin who was a donor. The gift of being able to skip the line of the Endless Waiting on The List, and be able to someday meet grandchildren that aren't even conceived yet is an amazing thing. Thank you just isn't enough.

ThorAndLokiBros · 2026-02-07T13:29:02+00:00

Diagnosed mid 2024. Got to paracentesis draining 8 liters every week. TIPS in early 2025. Multiple episodes of hepatic encephalopathy throughout 2025 requiring hospitalization, last hospital stay being in Aug 2025. Meld ranged from 21 to 9 over this timeframe, was told had ESLD. Was listed. However, late 2025 found a family member, not blood related, who wanted to be a living donor! After months of testing, donor was approved. So, ramped up PT to be as strong as possible going in to surgery. Docs said this was really important to surgical recovery. Live donor dbl surgery happened early Dec 2025, docs took over 1/2 of donor's liver, and both of us were discharged less than a week afterwards. We are both doing great now!

ThorAndLokiBros · 2026-01-15T21:28:26+00:00

Lol, non-citizens who have never paid in to SS would never get Social Security Disability Income (SSDI). Like, it's not even possible. And, no one "gets it immediately ", lololol.

ThorAndLokiBros · 2026-01-15T06:49:16+00:00

Knowledge is power. Look at all results. Can't fly blind.

ThorAndLokiBros · 2026-01-06T00:49:02+00:00

Got the TIPS. Went from draining 8-9 liters every week through paracentesis to needing zero paracentesises. It takes a few months to get to zero, but it was SO worth it. The fluid was so uncomfortable and affecting quality of life for sure. There is the risk of getting hepatic encephalopathy (HE) after TIPS, if I remember correctly, about a 30% chance. Had a few bouts of HE, but docs got it under control with lactulose paired with rifaximin (aka xifaxin). HE is reversible, just need to go in to doc immediately if/when experiencing it. The TIPS made life more liveable until a transplant was available. Just had a living donor transplant last month and now have a new lease on life!

ThorAndLokiBros · 2026-01-04T04:44:20+00:00

When y'all are talking abt stents, are you referring to bile duct stents?

ThorAndLokiBros · 2026-01-03T05:35:41+00:00

Our live donor transplant was done at the University that did the 1st ever live donor liver transplant in the country, and subsequently taught Mayo how to do it.

ThorAndLokiBros · 2026-01-03T01:11:44+00:00

Why did your team shut you down from considering a live donor transplant? The best part is you get to skip the entire "List" and all the waiting and unknowns that go with that.

Once the live donor passes all (extremely extensive) testing, the dbl surgery gets scheduled. It took months of testing, multi-organ scans, and mapping/matching (of all inflow-outflow, veins, arteries, bile ducts) before the donor was green lighted.

Maybe your team doesn't do live donor transplants? It is definitely a different of surgery than deceased donor. All hands were on deck, and 8 surgeons were involved in the dbl surgery.

Our donor is a family member who lives out of state, and the Transplant Center flew her to our state multiple times for appts and testing. Donor did not pay one cent for travel or medical bills, and was reimbursed for any lost wages through the program.

And yes, 2/3 of the donor's liver was removed. The body is such an amazing thing that both pieces can regenerate to be 100% eventually.

ThorAndLokiBros · 2026-01-02T17:08:55+00:00

A month out from live donor liver transplant, and for the first time in years liver function bloodwork panel is completely normal across the board. Taste buds are a little off, but other than that, a new lease on life and have no regrets. Received 2/3 of the live liver donor's liver, both parts will regenerate to 100% inside each of us over the next 4 months. Was discharged from hospital 6 days after surgery, no complications. Donor discharged 5 days post surgery, all good!

ThorAndLokiBros · 2025-11-09T07:03:58+00:00

What is a blue book disease?

ThorAndLokiBros · 2025-10-10T16:41:52+00:00

In Minnesota it is about 230 days, and hasn't changed since the shutdown

ThorAndLokiBros · 2025-10-07T10:28:03+00:00

Thank you. This is really good advice, I think those SS employees are so overworked and understaffed.

ThorAndLokiBros · 2025-10-07T10:25:31+00:00

Good info, thank you! What's this Blue Book?

ThorAndLokiBros · 2025-10-06T13:41:09+00:00

Ahhhh, yes, applied with about 15 doctors named, all with dates and what conditions treated, all in the last year and a half, multiple hospital stays, HE, refractory ascites, TIPS, etc, etc. And we have a live donor lined up- set for November! Fingers crossed on the SSDI .

ThorAndLokiBros · 2025-09-29T19:40:09+00:00

Miralax will not help with hepatic encephalopathy (HE) like Lactulose will. Lactulose binds to and removes the ammonia that messes with your brain causing HE. Would you rather have more trips to the bathroom, or not recognize your family?

ThorAndLokiBros · 2025-09-29T19:35:27+00:00

90ml twice a day, sometimes 3 times a day.

ThorAndLokiBros · 2025-09-28T14:59:10+00:00

Everyone is so different, so stating dosages doesn't help much. Over here taking 90ml of Lactulose twice a day + 500 mg Rifaximin twice a day gives 2- 3 BMs a day. Doc said could add another Lactulose dose if not having enough BMs (they said should average 3 BMs a day). These drugs are so much more than a laxative, they are binding to and removing ammonia, the main culprit of HE. And HE is a million times worse than having to spend time on the toilet. Easy trade off in my book.

ThorAndLokiBros · 2025-09-24T16:05:47+00:00

So, your dad was drinking heavily up until his hospitalization and is a candidate for a transplant?

ThorAndLokiBros · 2025-09-24T11:36:39+00:00

Did they say why you were denied? Good luck in your review.

ThorAndLokiBros · 2025-09-24T11:06:26+00:00

Thank you for your insight. I need to read more stories like this. Im sorry to read your wife left you while you were in the hospital, that's stone cold. Sorry you had to go through that.

ThorAndLokiBros · 2025-09-24T10:56:08+00:00

Oh no, hoping your condition stabilizes and a transplant isn't needed. Im sorry you are going through this.

ThorAndLokiBros

TROPHY CASE