A little guidance needed

Hey y’all.

My husband was supposed to be close to a transplant.

He had severe insomnia and I asked the dr to get labs on him. I suspected ammonia… he had his first HE in December and bad insomnia in the fall. His ammonia was 287 which dr was astonished at. He said- if anyone else had levels that high I would prepare them for death within weeks, but your liver is holding steady and not spiking with the other levels.

He told us that his current meld of 18 meant his liver is not showing how bad it is. He prepped us that he may get a liver that someone else gets called in for but doesn’t qualify if there testing is off that day… so we would be the back up. Which he said happens rarely.

Has anyone else faced this? It’s disheartening…

my husband feels lucky that he was chosen as a back up bc it will give him a second shot at getting a liver until his marks higher.

They also told us he was within a 1-3 years for transplant almost two years ago…and they didn’t expect side effects…well, he now has ascites, varices and he. I know they cant guess how someone will do, but painting a rosey picture because he is so young didnt end up helping. It makes me nervous about how well they said he will do after the transplant.

Processing it all…

Mommymoses, I am right there with you, just processing. After a hospital stay on Friday and Saturday, my meld hit 17. I saw in the hospital notes that my doc said the psc is worsening, and on Tuesday, my transplant coordinator said he would trying to get some exception points that, if approved, would put me at a 20. Top of the list for a B+ liver. They will know in a week or two.

From what I understand, liver and its related symptoms notwithstanding, the healthier a person is pre-transplant, the better the recover.y is. And age will help-better to have a transplant earlier than later.

I have learned that psc will test the patient’s and caregivers patience, flexibility and sense of humor, for it can be a tough roller coaster ride.

Focus on the long term, but yes, you still have to get through the daily stuff, but think long term.

Remember that there is a special place in heaven for caregivers.

Praying for your hubby and your family. I’m not there yet, so I can’t give you any input, but I can imagine how stressful this all is!