Welcome, La Bunna. I am a patient with hep C, mild cirrhosis, and living on one lobe of the liver, the other being removed due to primary liver cancer from hep C.
If you'll skip to the second page, there is a thread (second from bottom) about the stages of liver disease (started by our wonderful nurse participant here, Shelly) that you might find very helpful. I think if you read some of the older posts here, you might find the answers you are seeking. People progress with this disease at different rates. Not everyone is the same, so it's difficult to say what you might be facing in the future. However, you can get a general idea of symptoms, etc.
This is also a good place to "vent." So keep coming back!
Hi La Bunna Welcome to the forum. I know exactly how your life is right now. My husband is 59 and we started this horrible journey 15 months ago. Please don't give up. I know its so hard but if he is on the list there is always hope. They used to drain my husband as much as twice a week. He has lost his muscle mass totally. From March 20 until Feb 08 he was in the hospital as much as he was home. Then in Feb 08 he went three months with no hospital stay. It was like the best vacation we have ever had. We had started building our second home when he got sick. I ended up doing most of it from the hospital. So we got to go to the beach for two weeks. He has been hospitalized for everything under the sun. At first it was electrolyte problems then dehydration then Amonia, then internal bleeding, then vomiting and dehydration and so on and so on. I'm sure you are familiar with it all. I too think What am I'm going to Do if I lose him. I just have to drive that out of my mind. Our life basically sucks but I keep telling myslef I still have him. Is your husband on diuretics? They keep adjusting Jerry's because of the fluid. LIke I said we had three good months. My husband was a workaholic and can barley walk these days. Can no longer drive even though he will try every now an then. He's so used to being productive so it makes it hard. We're getting ready to put a recliner and maybe a small TV in his office so he can take naps. He just insists on going to work. I also know what you mean about sleeping. I am worthless without sleep. I finally got really involved so I could fight for him. You should try that it makes you feel like you are helping. My husbands MELD score has been at 17 for quite some time. His son is now persueing the live doner transplant because we are all so scared his body won't hold up much longer. Its amazing how much abuse the body can take. Read through all the posts to get educated. It really does help. Just keep a stiff upper lip and stay in touch with this forum. Its a big help.
I've just returned from the hospital. Of course, they admitted my husband again, to 'fix him up'.
An encouraging note, though, is that THIS time while we were in the exam room, the transplant surgeon came in an examined my husband. We've seen nurses, nurse practioners, residents and our doctor's partners.... but never a transplant surgeon.
As dispondent and disgusted as I am, the sight of him was uplifting. Could we be getting closer? Although, we were told once again by our primary hep doctor that the MELD score was not any worse. (In fact it had gotten oddly better) His symptoms have accelerated - and his MELD score got better. I find this just plain weird.
Isn't it his liver that is causing all these symptoms and maladys? I don't get that. Can you just die from the symptoms and keep that "OK" MELD score?
Also - since I only found and joined this forum yesterday - (at the end of my rope yesterday) I have a lot of reading to do and a lot of posts to catch up on.
Thanks to all who have helped me with their good info so far!
I know how frustrating it is. The same thing has happened to my husband. He can be so sick admitted to the hospital and his MELD goes down. Start getting copies of his blood work. They will give it to you if you ask. I have started a note book. The MELD is based on three things. 1ST-Creatine (Kidney Function) 2nd-Bilirubin 3-PT (has to do with blood clotting)
Once you get these three figures you can google MELD calculater. Then all you have to do is put the numbers in and it will calculate his MELD score. My husband gets dehydrated his MELD goes up. He goes in the hospital they "Tune him" as the Dr.s call it and his MELD goes down. Its crazy. If your husband is swelling a lot they will probably adjust his diuretics.
Remember to try and gets lots of sleep. You will need it to take care of your husband.
That is really good info - that MELD calculator.
I will start using it myself! And I will keep a notebook, too, of the bloodwork.
I found, as you probably already know, during all his years of being sick on the Hep C 'treatments' that you HAVE TO TAKE CARE OF THINGS YOURSELF. Too many times I got 'the run around' from nurses or labs. Too many times we were give plain old incorrect information. Too many times we were left wondering "what just happened here?".
You are a proactive gal, and I am going to use your experience and information to HELP MYSELF and hubbie.
Thanks and thanks again!
Thank you so much.
I forgot to tell you I had a good conversation with Jerry's Gastro Dr. On Friday about the live donor program. He told me the Univ of Chicago is having a lot of success with the live donor program. He thinks they are doing most of them. I just thought you might be interested in that little tidbit of info. Hope you are doing OK. We go tomorrow to get tapped again. It will take most of the day. Have you got any more info on the TIPs. I just found out a friend of my daughters her Dad had a TIPS. I'm going to try and reach her so I can talk to her mother. Her father died last year. From what I understand he got a viral infection and that is what killed him. He was on the transplant list for 5 years. They were just getting ready to remove him from the list. Why they would do that I don't know. Also this info came to me from his daughter who might not have understood all the details. I will keep you posted.
Carol I know I owe you a call just been a crazy day. Hope you are doing OK
“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."
LaBunna, my condolences to you on the loss of your dad. I'm sure it was painful, especially to have to deal with it without the support of your hubby. Certainly it helps to know your dad is no longer suffering. I lost my own dad to suicide when I was in my late 20s. What a very painful shock that was! But I had to keep telling myself that he was at peace.
Shelly, thank you for sharing your experiences so beautifully.