June Thank you so much. I did later in the evening try and got the same thing. Girl what on earth are you doing up so late or should I say early??? Thanks again. I think that MELD is getting up there. I don't know if I should be scared or happy! I'm sure you know what I mean. His MELD a few months back was 18 then went to 17 then to 13. I'm trying not to panic but its hard. I will keep you posted.
Hi June Jerry is doing so so. He had two really good weeks but has started to slide down again. His lactalose is working but he gets the sleepies and falls a sleep in mid sentence. Also the shaking gets really bad. I'm just so scared he will be too sick to have a transplant when he gets to the top of the list. I have no idea were he is on the list. With a 16 MELD its hard to say. Can I look that up! It probably doesn't matter because it could change by the hour. He is also having horrible itching problems. I have to rub him down. In the last few weeks I have noticed his veins in his feet and legs are showing really bad. I'm sure something else is going to happen. I'm thinking he might need another antibotic. Vanderbilt keeps telling me they are used to people much sicker then him and I find that hard to believe. The Dr. have told me its common for some of the patients to be alot sicker then their score. I'm not sure how that works. Can they add points to their MELD if they determine they are sicker? I thought you would know that. Thank you so much for the info June. It helps me to talk to someone that is in the same boat.
Theresa Thank you so much I went into the medicine cabinet and we had some of the gritty stuff. The kidney Dr. gave it to him last year. He wasn't itching as bad back then. I have already given him a dose. As far as the neomycin I think that is an antibiotic. It does sound familiar. I'm going to call Vanderbilt tomorrow and see if he can get some. This evening he is complaining of nausea again. I'm sure its due to an infection again. Here we go again! I feel so bad complaining but this is so hard. Thank you again Theresa.
June That is one think that just drives me crazy about this disease. Not to say that any disease is easy but sometimes I feel like I'm losing my mind. Just about the time I think I have learned EVERYTHING about this disease. I get blind sided again. We were told that time on the list has nothing to do with the MELD score. I did talk to Vandy yesterday. We have a nurse practioner. Its not always the same one that calls back but we have one that will be making the call when a liver comes in. He told me that Jerry's MELD score is not high enough at 16 because of his blood type. Its O. AS I understand it that is good and bad. Its bad because O can only receive a liver from an O but A and B can receive an A or B respectively and if they are on the top of the list and all that comes in is an O they can get it instead going down the list for an O. I might have this all wrong it would be the first time. I think thats why the surgeon told us Jerry's MELD would have to be in the mid 20's to even get close to the top. I don't get that. Also we do have a case manager. The one we had before we got on the list was great he gave me a lot of good info. Now we have a new one and he's not near as good but I need to give him a fair chance since he is new.
Misha Jerry is now on neomycin. I don't know if I told you because of your e-mail I contact Vandy and he was suppost to be back on it. They had him on it for 14 days then went off for 14 days then wanted him back on. I didn't know that. Just another one of those things I forget. I seem to be doing a lot of that now. I felt so bad because I swear I didn't remember. That is really scarey. I have a log I keep but I didn't write that in there. Anyway his dosage is two 500 mg in the morning and two in the evening. I'm curious about your husbands dosage and what his MELD is. I'm so glad I read your e-mail. This is just an example of how this forum helps. He is also on the grit. We are now at the end of day two and I really think its is beginning to ease up. I really believe that the kind of itching this disease give would be a good form of torture. Thanks again everyone.
Therese I said that wrong. Jerry is taking 1,000 ML twice daily. You gave me a good laugh this morning. I do have an Ass living in this house at time but I still love him.