seeking knowledge and inspiration

Hi, I'm back.... I have been on your forum weekly now for quite sometime. First and foremost, I must give my condolences with the passing of Connie. She left an imprint on me even though my interaction with her was brief on here; she was to the point, extremely knowledgeable and kind. She gave me hope about my Husband's possible HCC even when the Doctors at UCLA told us they were 99% sure he had it, well he doesn't. So I will always remember Connie because of the light she helped me see during my darkest days.

As for my Husband (36yr), wow what a ride, and I know it has only begun. I am here today hoping for a little insight on a few things. He was diagnosed with Alcohol Hepatitis in May of last year. They then found a mass in his liver in August, we moved to the East Coast because we have three children and I was in need of help and support from my family. After weeks of transferring everything we finally received the call on November 15th that his biopsy results showed no Cancer and that the mass was regenerating liver tissue. November 15th was such a glorious day in our house I hadn't felt joy like that for quite sometime. My Husband has been completely sober from all Alcohol since May and pain meds and anxiety medication now for 3 months. We met with the transplant team at Georgetown and we have been documenting his sobriety since October. He is enrolled in an outpatient Rehab here and has been doing really well with the treatment.
My questions and concerns are that the Doctor at Georgetown just told him about his results from his MRI in November, and only because my Husband asked. They found some cirrhosis tissue in his liver. And have now diagnosed him with Cirrhosis. His current MELD score is 16. His Ascites is still bad he takes two diuretics daily but he still gets a para every 2-3 weeks. He has a terrible umbilical cord hernia that causes him a great deal of pain. He has no muscle mass, and is still jaundiced not as bad but it is still there. His sleep is still screwy, but much better than it was. He has not had any HE moments.... yet. We have applied for disability and are still waiting to hear back, his new insurance should be instated by Jan 15th.

My question is simply that will he ever be well enough to work and feel human again without a transplant? As long as he watches his diet, takes his meds, and of course NO ALCOHOL!!!! My Husband was a superintendent for Construction, so not so much manual labor. Unfortunately my job does not bring in enough money to support our family of 5, and he and I are beginning to run low on our savings. I don't want to sound naive, but we were hopeful when we thought he had Alcohol Hepatitis because we had faith he could come back from that. Now with Cirrhosis being almost certain and he being the bread winner for the family we are somewhat at a lost at how to cope. We live in Northern VA, which unfortunately is a very expensive place to reside. Have any of you been able to return to work without transplant? Again we both understand the severity of his disease I guess we just feel like we have had our legs cut off when we should be in our prime as a family. Any insight would be much appreciated.
Thank you and God Bless.

Thank you Ziff!! I feel like after reading your story, you and my Husband have a lot in common with the disease and symptoms. He was diagnosed with Alcohol Hepatitis and then they found a mass that they believed was HCC (hepatocellular Carcinoma). But the mass was benign ( thank goodness). And after not seeing his last MRI report from November, he called Georgetown and they told him that it reported to have found Cirrcrotic (sp?) tissue. So after months of thinking he just had Alcoholic Hepatitis we found this out. Just a blow to our already low enthusiasm :( We try hard to stay positive but it's been pretty rough. We do our best around our children, and behind close doors share our tears and fear. We were hopeful that after 6 months sobriety he would start to feel better, but those days are few and far between....

Thank you for your words Ziff, I will share them with my Husband.

Thanks Ziff, his hernia is the size of an orange, and his GI doctor really does not think they will preform the surgery until his ascities has slowed down. It is red, not hard, but when the intestine pops through he is in extreme pain. Georgetown called today and said as soon as his insurance is back in order they will have him come in and have him evaluated for the hernia surgery.

They remove any where from 5- 8 litters. Yes he does get Albumin, before we left the West coast he was going every 8 days they were getting up to 8 litters and he never once got albumin, I wonder if that helped in his rapid muscle loss, it really was after the paras started and it happened over night.

He has yet to have any really confusion except if you wake him from a nap during the day, but when he is up he is still very with it.....thankfully!!!

Do you still work Ziff?

Whether he can go back to work depends on how cirrhotic his liver is. If it's shot, he needs to try to get a transplant. Scar tissue (cirrhosis) does not get better. How much of his liver is working makes all the difference. Is he taking lactulose and/or xifaxin? You might also want to try Johns Hopkins, as they have one of the top liver and transplant programs in the US.

Nope, UNC doesn't feel I could hold a job without being in danger to myself or someone else. Although I feel physically capable. I drift off to sleep if I'm idle for any length of time and the encephalopathy has to be controlled by medications that don't mix well with work environments. My liver capacity is estimated at 15% of it's normal function. I had to have emergency surgery done for the umbilical hernia when my intestine kinked, The surgery was successful but they couldn't place the reinforcement mesh behind the sutures. A risk of potential infection from the mesh ruled that option out. No mesh equals a greater potential for the hernia to come back if I strain to much. I also had TIPS surgery done to relieve the chronic ascites problems.

When I applied for disability I don't believe they thought I would live to collect it. I was admitted with a MELD of 28 and complete renal failure, Doc's said I wouldn't live beyond 3 months max. I was listed as terminally ill. SS didn't even think twice about my situation after a face to face application appointment. I got a feeling they are gonna try to cut me off soon and that might make life really interesting. What employer would hire someone who is riddled with medical issues? Insurance will be another can of worms I don't even want to think about. Honestly, What ever will be, will be. This world hasn't eaten me yet and I'm sure whatever the future holds cant be worse than where I was.

I was making good money doing my old profession but found out that chasing that dollar isn't everything. I learned to do without some worldly things. If it came down to it I'd give up this forum/internet, phone and tv. I can survive one way or the other. Might even be better off. I just kinda go with the flow for now, Really that's all one can do. A few years back I set up a blog of sorts to show a before and after picture of myself and people were amazed. I've weighed 210 lbs. @ 6 ft tall all my adult life, I at one point dropped to 145 lbs. with all the fluid drained off my abdomen. I looked like a walking skeleton that swallowed a basketball for almost a year before I had TIPS done. I was getting paracentesis done 2 times a week with 6-8 liter draws and more than a few times saw 12 liters at one setting. It was horrible. I can get what he feels like and my heart goes out to him/you.


Ziff

Your husband needs to have his ammonia levels checked to see if he has HE.

No, I took it down about 3 years ago. I decided to put it up mainly so people people here could put a face with the disease. A few folks here probably still remember it. Some of us have been here for over 4 years and still contribute today.

Make sure your husband is getting nutrition, Ensure or something close works fine. Beans are a good source of protein and stay away from salt. I had a binder that I got from a medical supply with velcro attachment to keep the hernia in check, Kinda looked like a corset but worked. A few times the place they inserted the vacuum line in my stomach began to leak or weep. I used to stuff towels around the under the binder to absorb the fluid until someone suggested womens sanitary napkins as a better alternative (Just in case that happens to him).

The TIPS surgery isn't a good option until it becomes obvious that medications wont work to reduce the fluid. Yes, There is a chance it will increase encephalopathy and in fact it's risky surgery anyhow. At the point when they offer that as a option it's about quality of life and not quantity. It relieve's you of daily in patient hospital visits for draining but there's no guarantee you'll come out without risk of insanity or death. I guess in a morbid sense of humor you'll never know either way if one or both happens to you.

I hope you guys are keeping up with paperwork. That will make or break you. One missed fax from one office to another and your in for major headaches. Keep a binder or something just for medical records. It's not a option. I've had to produce my own records at least 8 times over the last few years to clarify things that have gotten lost in the shuffle. Makes for great brownie points with the doctor too, Shows interest and involvement. Doc's can be a bit skeptical of those of us suffering from addiction related illnesses.

Ziff

My hospital got Ensure for me at cost.

Good to know, thanks. He was drinking Ensure awhile ago when his MELD score was close to 28 and he had absolutely no appetite. But the Doc's at the transplant center told him to have a bit of protein with almost every meal, so having one with Breakfast/Lunch/Dinner is a good idea. Thanks again everyone, I will keep you updated!!

Hi Kristin,
I am late to your post but I wanted you to know I am following your journey. You sound like you are on top of it. Big Hugs.