My Husband Is Really Ill (Liver Failure) [edited title]

Oh, dear. All the empty platitudes apply of course: one day at a time, try to control the things you can control (diet, exercise) and try not to stress too much about the things you can’t. First and foremost, breathe. Let yourself cry when you need to, and scream, and tell the trees how unfair this all is. It *is *unfair, and it sucks, and it’s totally okay to be mad as hell about it, and scared, and sad. And, of course, vent here all you want.

Okay, that said, the fact that the doctor wants to address the ammonia build up through diet is a good thing. It means it’s not so severe yet as to warrant more aggressive (drug) therapy.

There is a drug (usually Lactulose) that they may decide to give to him eventually. It binds to the ammonia and makes him poop it out. He may also give him aggressive antibiotic therapy eventually - the ammonia is actually made by bacteria in the gut. If the ammonia level can’t be brought down by diet and Lactulose, antibiotics can kill the bacteria in the gut that make the ammonia.

Diet guidelines your doctor gave you trump anything I say, of course, but in general, you want:
low fat - the liver makes bile, which breaks down fat, so fat digestion is difficult when the liver isn’t working well
low protein - protein requires a lot of work from the liver to digest, and a diet high in protein increases toxins that his liver can’t clear right now. Vegetable proteins may be easier on the liver than animal proteins, and less likely to cause ammonia buildup.
low simple carbs - blood sugar gets hard to control when the liver is out of whack
high complex carbs - he needs to get his energy from somewhere! Complex carbs are the least strenuous foods on the liver.

Lots of vegetables and whole grains, some but not too many nuts, few meats, cheeses, refined sugar, white flour, etc. Alcohol, of course, is right out. You’ll notice, of course, that that is a pretty good diet for most people, so you should consider joining him on his new diet, with the addition of a bit more protein for you. It may help him - and you - to feel like you’re “in this together”.

No Tylenol! It’s *really *hard on the liver. Ask your doctor what he should take for headaches and such instead. Remember that Tylenol (aceteminophen) is “hidden” in a lot of cold and flu remedies, so read labels carefully. It’s really best to run any medication, including over-the-counter stuff, past your doctor or a pharmacist before he takes it. Pharmacists are usually quicker to get hold of; if you have any medication questions, pharmacists are trained to know and be able to answer many patient questions, so don’t forget them on your list of professionals who can help you.

Don’t give him vitamin supplements unless they’ve been approved by your doctor. Excessive vitamins are hard on the liver. He may need a special kind of supplements for fat soluble vitamins; your doctor can give you a prescription for those.

If there’s anything I can help with, any terms or anything you don’t understand, please don’t hesitate to ask. I’m not an expert by any means, but I’ll do what I can.

WhyNot, thanks for such a thoughtful and informative post. I had forgotten that laxatives were part of the treatment for Hepatic Encephalopathy. And you posted lots of good advice. We’ll definitely be watching his diet and I’ll make certain he has no Tylenol. Thank you for taking the time to explain all that to me. I’m still in head-spinning mode, so having something concrete to hold on to really helps. I can’t thank you enough.

Faithfool, next Tuesday will be the 18th anniversary of my good friend’s liver transplant. He calls it his “liverversary”. His was necessitated by a raging case of hepatitis that he picked up while unwittingly surfing through a sewage spill.

Obviously his illness was hugely traumatic for him and his family, and this is the terrible part that you and your husband are living right now. But let me just tell you that if it turns out he does need a transplant, once he gets the new liver, things will be MUCH better. My friend has a bunch of meds that he has to take, but the dosage of the immuno-suppressive drug has been reduced to nearly nothing; the other meds are for hypertension and high cholesterol - the sort of stuff any 60-year old could easily be taking.

He has to go every year for an appointment with his internist, and he has to be really careful about skin cancer (fair-skinned former surfer on long-term cyclosporine = potential skin cancer).

But his life is good - real good. He says he has fewer medical issues than his brother-in-law the well-controlled diabetic. He enjoys life and can do pretty much everything he could do before the transplant. Well, he can’t be a male swimsuit model - he has a pretty big scar.

My point is you are at the beginning of a very scary journey, but that’s what it will be - a journey. It’s had its beginning, it will have a middle, and it will have a conclusion. That conclusion will be the successful transplant (or a diagnosis that one is not needed). And then you both will be able to emotionally unpack, and resume your lives together.

My thoughts are with you and your husband and I wish you both the best of all outcomes.

Please everyone, sign up to be an organ donor!

Agreed on the organ donor.

faithfool, I’m very glad you’re getting some answers even though they may not be the answers you’d like to hear. I know I would be a big puddle of mess right now so give yourself permission to fall apart every now and then. It’s really OK. Take gentle care of yourself, my friend.

Thank you Dr. Woo and Ruby for the encouragement. I am beginning to grasp that we’re on a journey and, although I may not like it, it does help to have answers to our many questions. Today has been much better than yesterday and I, in part, credit that to this board with all its helpful people and introspective responses.

I know the battle is going to be long and difficult, but I do believe I’m up for the challenge. We’ll make it through this and survive to a better and stronger day.

This article about two living liver donors for one of their neighbors was on the front page of today’s Chicago Tribune. The first donor was discovered to have scarring on her liver when they opened her up for the transplant, so she was no longer eligible; another neighbor was found to be a match. Just a little feel-good story for you, and I’ll be hoping for good results.

faithfool, I’m so terribly sorry you’re going through this – wishing you and your husband peace and strength as you deal with everything.

[mod]Per your request, I updated the info in the thread title. [/mod]

twicks

I had mine done about 3 months ago. It hurt some. Nothing he can’t handle.
I was given oral Ativan and then local anesthetic injections as they went. Tell Jace not to sweat it too much…

Just wanted to say that I’m so sorry you’re going through this. Sending positive thoughts your way. Hang in there.

Sending positive thoughts your way!

I don’t have any useful medical advice…but keep good thoughts, and have a little faith in modern medicine.

Things that we found scary growing up are treatable now. Keep an open mind and do your research…and keep reaching out to your friends here on SDMB.

Here’s hoping things turn out well.
-D/a

Much love for you faithfool. My stepdad is currently preparing to go on the liver transplant register, due to liver failure caused by Hep C.

Everything my mum has been reading about the situation indicates very strongly that liver transplants are one or the more successful transplant procedures and that life can continue healthily and as normal once it’s done.

As WhyNot says, concentrate on what you CAN control for now. Tidying up his diet, working out what foods he can concentrate on eating to keep the rest of his body as healthy as possible, keeping sodium and protein levels down and so forth.

It sounds like he’s got a good medical team in charge of his care, so take comfort in the fact that this is what these people specialise in, they’ve identified the problem and they’re working on steps to resolve it. The long term prognosis once the transplant is successful is good, so this too will pass.

Good luck, faithfool. Much love your way.

**faithfool, **you are ever in my thoughts.

Please remember to look out for you too! It isn’t the same, but it very hard on the partner too.

I’m sorry his condition is such a serious one, but I’m glad they’ve identified the issues so precisely and that there is treatment.

I’m continuing to keep both of you in my thoughts and prayers.

Thank you for the article Ferret Herder. It was incredibly uplifting… just what I need these days. And I’m glad to hear that a bone marrow biopsy won’t be that bad. I know he’s been dreading it, so since it’s manageable, that’ll be one less stress on us right now.

To everyone else, thank you all for the kind words and supportive thoughts and prayers. You just can’t know what each of you (and this place) means to me. It’ll be the Dope that’ll get me through this. I love you guys.

P.S. Sierra Indigo, he does indeed have one of the best transplant doctors in the southwest. So at least I have that to be confident in.

Offering prayers for you and your husband, faithfool.

Best wishes sent to your family for a positive outcome, we’re all pulling for all of you!

My SO went through almost everything your husband is going through.
I won’t go into the long version of the story, but ask about a TIPS procedure - it is a shunt that bypasses the liver. They used to use this as a “temporary” fix before a liver transplant, but have discovered it works long term as well. My SO had his done over 5 years ago and is going strong.
Yes, there is some ammonia build up, but a simple liquid (Lactolose) is all he needs to drink mornings and evening to keep those levels OK.

I just want to let you know that one doctor misdiagnosed him and sent him to Walgreens to get anti-gas tablets…we dropped that doctor.
The next doctor diagnosed it correctly and told him to get his affairs in order, he would be lucky to live 6 months…we dropped that doctor.
The third doctor sent him to the hospital for that TIPS procedure that very day.
As mentioned, that was over 5 years ago.

Keep your chin up and, by all means, get a 2nd, 3rd, 4th…111th opinion if necessary. We learned that can make all the difference!

DMark, thanks for sharing that with me. I can definitely use some good news. At his next appointment, I’ll be sure to ask about the TIPS procedure. It sounds like a decent alternative early on.

And again, to everyone else that’s responded, thank you so much. You guys are really keeping me going. I’ll make sure to update this whenever he’s done with his bone marrow biopsy.