Hi, LJ. I just wanted to welcome you to the forum. As you can see from the replies you've already received, you do have company with the long waiting. Is there any possibility of a live donor transplant, or is that not done at SLU or not an option? I know that Mayo Transplant Centers have the shortest wait in the country--generally 2 mos.--but not everyone has access to Mayo.
Hang in there! You will get a lot of support here!
LJ, thanks for checking in and bringing us up to date. I'm so sorry about your hubby's accident, but think you are on the right track. Just be persistent in doing whatever you have to to positively affect that MELD score!
Since the advent of HMOs, patients have had to become more proactive in their health management. This is especially true of liver patients, regardless of insurance.
Hang in there!
I just wanted to tell you I know exactly how you feel. Sometimes I think my head is going to explode from information. Also every time I think I have learned everything there is to know about this horrid disease something else pops up. I too was told that fluid around the lungs will give you exta points and also low sodium. I really beleive that when that committee meets they can put in for more point for whatever. I do not have proof but I really think that is what happens. I can not immagine how you are holding up. I know how I am holding up and my journey has been only 2 yrs. I don't know if I can make it another two year. And then there is my husband. He can barely walk due to fluid in his legs. They are so big the fluid comes through the skin. Its so painful. I'm not going to go on with my problems because you have enough of your own. I will pray for your husband.
Dear Long Journey
My heart goes out to you! I can't add to the great info you've been given and have given us, but I must concur that the more you know, the more you can help your husband. We think that everything is "being taken care of" but that's not always the case. Now you're on to how some of it works. I hope your long journey speeds up a little now.
LJ, you go, gal! I am proud of you for being a "squeaky wheel." You are doing it for a good cause--to save your husband's life--not some trivial thing. Keep up the good work and I think it will make a difference.
I just learned something from you. I did not know that hospital stays had anything to do with MELD. I have a feeling there are a lot of things we DON'T know. Speaking of that does anyone have the problmes with their legs being really HOT and RED. His swelling if finally going down but his legs are still really hot and red. Since he has gotten rid of about 30 lbs he can at least walk and there are no NEW seeping sores. But at the sight of one of the sores that is scabbing over he has stabbing pains. They did give him high doses of antibiotics in the hospital last week. I'm just curious if anyone has had this problem. Thank you all.
That is the word I was looking for "Cellulitis" They talked about that in the hospital. I need to read up on that because I think that is what he has. His legs are really HOT to touch. Even though the swelling is going down there is still a lot of swelling. Is that something dangerous. I did call the GI office today but they have not returned the call yet. Also they did find some blood in his stool so now they want to do a colonoscopy. That really worries me. Could it be the disease or something else! I'm tired today. My brothers Dr. just called and they had put him on a resperator. He has been in the hospital for almost three months. He's a quad and it just seems like they get one thing going right and something else happens. They had to do a para on him and hit a vessel. Didn't know it right away, that is until his Hct was a 15. Then they gave him 4 units of blood. Which caused some kind of reaction with his breathing. I'm feeling so bad because how horrible would it be to think you are going to die and be all alone. I am all he has and I haven't had the time to be there for him. I guess I'm having a pitty party right now. I will research the Cellulitis. Thanks
I am concerned also. He was in the hospital all last week and they gave him antibiotics IV. He has been out of the hospital since last Fri. I would think his legs would be better. We have managed to get the swelling down (somewhat) but his legs are still really red and I can't even touch them they hurt. I don't want to subject him to ER tonight so I will call early tomorrow. My concern is if the antibiotics they gave him in the hospital did NOT work. What do they do now. Also is that going to hurt his chances for the transplant.
JoAnn, yes cellulitis is serious. Try to get hubby seen tomorrow! He may need a different type of antibiotic than he was getting. I have had cellulitis once, unrelated to my liver disease. I got bitten by a brown recluse and my armed swelled up to 3 x its normal size and turned dark red. They tried all kinds of IV antibiotics until they finally got a combination that worked. I nearly lost my arm. Enough said. It was weird, though, because when the swelling went down the skin peeled off just like a sunburn.
If there is no change in the morning, you should probably take him to the ER. Also, have you taken his temp?
JoAnn, you are far from a loser. You are a very strong and giving person. We have an expression in AA that I like: "Don't should on yourself."
It has to seem like a momentous load, between your husband and your brother. You do what you can and that is enough. And as Joan said, don't forget to take care of YOU.