I read you post with much interest. My husbands legs are now swelling really bad. He is getting drained every week now and they keep increasing his Aldactone. Then he becomes dehydrated and they have to back off. BUT, the swelling in his legs is not going down. I am scared to death they are going to do a TIPS on him. His Gastro Dr. is trying everything. But Vanderbilt will have the final decision to do the TIPS or not. To top off that problem he's now walking around the house with a coat on its 80 degrees in here. He has put a heater in our bathroom. The Dr. told me last week he will probably need another blood transfusion in the near future (that will be the 3rd one). My question to you is how did you finally make the decision on who to listen to? I'm a little comfused that you have two transplants teams. We only have one heptologist and one transplant team. Did you change hospitals? It really doesn't take a lot for me to be confused these days. I'm fairly certain I have no brain left what so ever. I just walk around in a haze! Its a nightmare! One day I want him to have the TIPS the next day I don't. I think I'm getting close to one of my melt downs. They are coming more frequently now days. I'm sorry for going on I guess I just want someone to tell me what the hell to do. OOPS. I sure hope you are doing better then me. Thank God for this forum.
I totally understand now. Thanks for explaining. Sounds like you have some good Dr. on your team. I think we have good Dr. also. As you know the Jury is still out on that one. I have trouble remembering Jerry's Dr. name so I call him Richard Dryfus because thats who he looks like. Actually it was a cross between Dryfus and George Lucas. I was going to call him Richard Lucas or was it George Dryfus but I had too much trouble remembering it. So now he is just Richard Dryfus. He also has a Clark Kent on his team. Some how I just got side tracked. I know now I'm loosing my mind.
I would like to say I'm better today but not so. We both layed down and took a nap yesterday. While I was sleeping Jerry woke up and drove to the store. I slept throught the whole thing. He wanted to make blueberry cobler. His Secy brought him fresh blueberries. To make a long story short he made it back from the store and made the cobler. I must have been in a comma. He bumped his leg on something and started bleeding. I slept through that also. I think its probably a good thing. It seems he's bleeding really easy. I think that will affect his MELD score. I just can't let him out of my sight. I need to check on him. Its been 15 minutes and no sound. Hope you have a good week end. Please add Jerry to your prayers.
Oh I might let you have exhausted and I will take Looney
Wow that is good news --I think. We have to be careful what we wish for. If you know what I mean! I'm with you thought they just can't stant much more. Jerry's MELD was a 17 the end of May. I calculated it myself in June while he was in the hospital and it was an 11. Crazy isn't it. We do another blood test next week. I don't know if I explained but when he is hospitalized he goes to a hospital in Knoxville. But for transplant he goes to Vanderbilt which is 3 hrs away. So we go for check ups to see Richard Dryfus every 90 days. Our next is 8/27. I'm sure his MELD will go up because of the blood issue. Also I think he's getting closer to a transfusion. Has your husband ever had a transfusion? I haven't found anyone on the forum that has needed one. That concerns me. BUT everything concerns me these days. What dosage of diuretics is your husband taking? Also how long has he been on the transplant list? The Dr. at Vanderbilt told us the average time on the list until transplant is 1 1/2 yr. Can you believe that. Ofcourse that is average. Need to go fix more Food. I know this sounds crazy but I think I'm going to have a glass of wine and some cheese and grapes. Hang in there.
"Wine time? Already? By golly it is! I'm IN!"
No fair, LaBunna, for those of us who can't join you!!!
Just kidding, of course. Can't join you, but you enjoy. You (and all the other wonderful caregivers) deserve some relaxation.
Oh MY what was I thinking. I'm so sorry Connie but it was really good. I actually had an out of body experience. It felt so good. Now back to reality!! Hey Carol you can join us also. You deserve a break today!!! OK RealIty. LaBumma I have to ask? Have they given your hubbie any time? I'm afraid to ask in front of Jerry. Also Jerry has had the shaking a lot. Usually when his hand shakes his amonia is high so watch that. Jerry has had it so bad he couldn't even eat. I had to feed him. I can't believe your hubbie can even change a light bulb. One of the nurses told me when he starts shaking like that its called the liver flap. So watch him close. You can usually smell it that is if you have a sniffer left. Ok Meds-Aldactone 300mg every morning, Lasix 1 mg every morning (I'm not sure about that because it should be in 10mg - 20mg etc doses) Hydroxyzine 50mg three times a day (I have cut this back because it makes him so drousy and it really doesn't work well) Sertraline 100 mg a day. This is suppose to help the itching also and also depression. My husband does not even know what depression is. He has a really strong mind. Protonix 40 mg twice a day this is for his stomach. He vomits ALOT. Also the lactolose two tbl 3 x day or 4 x a day etc etc. Oh yes he is on Neomycin 500 mg twoce a day. That is antibiotic but used to lower amonia. I think I might have at least a bachlors in Pharmicudical. That is if I knew how to spell it. OK one other think I have noticed is Jerry's doesn't seem to be able to count good the last few days. Which is really unusual for him because of his Engineer brain. I think I read something like that in Shelly's ESLD stages. I will have to go back and look. Also did they tell you how high your husbands MELD has to be before he moves to the top of the list. Jerry was told because he is O blood he will have to be in the mid 20's so he still has a long way to go. I really hope the life donor things works for him. I need to get off here. No more wine for me. I have not seen the sun today so I have to go outside and talk to my flowers.
The dr. mentioned a MELD score of 20+. No one has ever given us a 'definite'. And the dr. also said that if hubby goes into crisis (liver failure or liver cancer or whatever other horrible thing could end his life) and is given 7 days to live ----- hubby goes to the top of the list.
How's that for "good news/bad news"? Yikes.
Also -to Connie. I regret being so insensitive yesterday. I am new to this forum concept and I wasn't thinking about what I was saying to Joann being 'broadcast' to everyone else, also.
I will try to keep my foot out of my mouth from now on. (Even tho you were really a good sport about my faux pas) Sorry!!!
We were told the exact same thing about the 7 days. Jerry is not doing good today. Seems to be a little spacey. I know he's pooping OK so its probably low blood driving up the amonia. I have learned that also. There are several things that make the amonia go up. Low blood being one of them. Also infection but he's on neomician so that should be the problem.
La Bunna and JoAnn, please don't worry about upsetting me or others who can't drink. We sometimes wish we could, but know that would be certain death...so it's perfectly okay for you caretakers to enjoy some wine...and you guys certainly deserve it. I've been alcohol-free for so long (22 years next month), that it doesn't even bother me being around someone who is drinking, as long as they are not alcoholic drinkers or drunk. What I do crave occasionally is a cigarette--especially if I get a whiff of one. I gave up nicotine 5 1/2 years ago. But I've heard from heavy smokers, who have been nicotine free for 10 yrs. or more, that they still get a craving occasionally. It's just a fleeting thing and I don't dwell on it. Good thing my attention span is short, because 2 min. later I don't even remember wanting it.
about the "flap," what I have read is that if they hold their arms out perpendicular to the body and they "flap," that is a sign of ESLD.
Aside from being so darned fatigued all the time (sleeping an average of 10 hours a day), it's hard to believe that I even have liver disease or ever had cancer. Which makes it hard to decide about treatment for hep C. I know if I don't do it, I could (and probably would) progress to ESLD, liver failure, or have a recurrence of liver cancer. From people I know who have undergone treatment, they all tell me how very sick they were during that year, but all who did it and cleared the virus say it was worth it. I guess I just need a little break before I start another assault on my body.
Hugs and "cheers,"
Post Edited (hep93) : 7/20/2008 9:39:04 PM (GMT-6)
Hi Everyone, I was reading up on pro and cons of TPS decisions. When you have a TPS you are bypassing the liver and slowing fluid retention which is good if thats a problem in earlier stages, but in later stages it can cause liver failure because you are no longer using what little is left and it really shrinks like a dried sponge. My Doug had TPS done early but it has been plugged up now as it was causing chronic encephalopathy and several episodes of hepatic comas. So TPS can be good sometimes and not good others. You have to believe in your doctors choices and you gut too. Its our gut that keeps us from being lead like little lambs.... hang in
Just a note from my experience with my husband,we found out he was sick in Aug 07 and had the transplant in Oct 07. He had Hep C-Cirrohsis-Liver Cancer. We didn't know about the liver cancer until the transplant, or probably wouldn't have had the transplant as it was very advanced and had spread. He now has liver cancer and is bad. Jerry did have to have a blood transfusion on the way to the main hospital. I stopped at a local hospital on the way and they wouldn't transport until he has some blood. One thing to always watch for or question your husbands about is their poop. I'm sure the docs have told you about black or very dark poop, there could be bleeding. We had that a few times. Jerry was cold and is still cold. We have no idea why his disease advanced so fast but it happened. We have a great transplant team in OKC, the only place in Oklahoma that does transplants. I hope the best for all of you.
Thank you all so much for the info. I think I understand the TIPS now. I just didn't understand why the Dr. for LaBunna hubbie said the TIPS could put him in to Liver Failure. Now it makes more sense. I do totally trust Jerry's Dr. at Vanderbilt. I just get upset with him because he never fails to find something we didn't do exactly right. I feel like he's treading us like kids and we got a bad report card. I just have to deal with it I guess. I totally understand the perfectionist personality because I'm married to one but I don't need another one in my life. Especially while I'm dealing with this rotten disease.
Helen, how kind of you to take the time to write in the middle of your fight. Please know that I pray for your husband along with mine.
I have a question for you. Where does the fluid go?