Cirrhosis Support Group

Hello, my boyfriend of 9yr has end stage cirrhosis, primary lived cancer and hep c.this is the first time I've done this so please bare with me.I'm also his caregiver. We have been going through this for about 2 yrs. When he was first told by his Dr. He might have liver problems it was the hep c and they wanted to give him inferon.at this timehe was suppose to get a MRI done he didn't due to their scheduling of appt. At our next appt he was told he had end stage, I didn't know anything about this disease so I started reading and reading night after night.he also is a Vietnam vet exposed to a.o.. so their treatment plan was to have a transplant he was a good candidates. They told me he had about a 75% chance he would be hospitalized in the next three years, the next month he was in the hospital he had bloody stool alot. In the e.r. he had a transfusion and as admitted they ran test and said his esphogaus was bleeding and they banded it. He also needed two more pints of blood.but as they were transfusing I noticed the blood was clotting in the IV told the nurse they got upset with me cuz what do I know. He then got sepsis also they released him and was referredback to his Dr. 2 months later back in the hospitalhigh fever and vomiting.admitted and had sepsis etc. 2 months later same thing. So I really researched it all.the VA said meld was at 13. They sent us to Portland to be evaluated for transplant. They told us he has hcc. 2 tumors the biggest at 2.3 the other one1.2cm.that was in Oct. I was told we met criteria and they said they would shrink it and he would be back on the list. Well in Nov. Nothing happened we had an MRI Dec 9 and was told the tumors have grown the biggest at 4.34 cm he doesn't meet criteria and at this point can't tace proceducer cuz biliruin level is2.8 and nobody would do it. All in all I've left alot out but the thing is I'm scared. At one point he had a nonfictioning liver now he is end stage cirrhosis advance stage cancer and hep. He sleeps alot and is starting to retain fluid again.this is beyond anything I thought I could handle. I believe he is drifting off already I'm afraid don't know what to Say or do can anyone give me a helping hand?

yolie5150,

I am so sorry things are so bad. Liver cancer can progress quickly (often before a transplant can be arranged)Many Liver patients are so sick treatment is difficult if not impossible.

He is so very lucky to have you there with him. Please take care of yourself. Talk with the Dr about Home Health or Hospice.accept help where it is offered. No one person can do it all.

Please know we are here for you even if you just want to vent.

Yolie, welcome to the group. This is a scary thing and you are dealing with it as best you can. Have you gone to another doc to get a second opinion? Hang in there, you are in my prayers. I am the one with the cirrhosis, don't have a caregiver but I'm sure other's here can give you more support from the caretakers end. You are in my prayers.

I understand how you feel, I am the caregiver. This is such a terrible disease, it seems at the beginning all I did was worry and wonder! And then I decided that I couldnt live like that, we decided to live the best we can while we can. Of course there are times when I am so afraid of the future but then I pray and then find something to do so that the moments dont last as long.

**Worry is like a rocking chair, something to do but gets you no where!**

Saying a prayer for you and your boyfriend!

I sympathize with both of you. I can't diagnose your partner, but suspect that you are facing a difficult time ahead. My 64-yr-old brother has ESLD, and has been in the hospital 4 times since he was diagnosed in August. The Drs say this pattern is likely to continue. Other than a transplant, there is no cure. Just love and patience. I've come to realize that he probably doesn't have long, and there isn't a darn thing I can do about it. So, we just take it day by day, making the best of a bad situation, and waiting.

Above all, keep up your strength and health and maintain your "real life". You need your health to help him, and your outside connections to rejoin the world when the time comes. Good strength to you.