Guest guest Posted November 3, 2008 Report Share Posted November 3, 2008 Hi Everyone, Well I saw my/a Hep Dr on the 24th. He says my blood work looks really good but he wants me to lose 35 pounds. I asked if he was going to treat the dragon and he said not until I lose weight. My normal before I found out i was sick weight is 145 and i am 5'6. I now weigh 176. He was glad that I have continued not to smoke but said that substituting ice cream for cigarettes could kill me too.(fatty liver disease) I told him I had contacted a foundation that helps with fundraising for transplants and that I needed a letter that said I was on the list. I told him that the transplant committee wanted me 1yr alcohol free , at least 3 months smoke free and to meet financial obligations that my insurance (medicaid) would not pay as well as the temporary housing relocation and food for thirty days plus anything else. He said for me to lose the 30 pounds and we would talk again.OK here is my situation. I am filling out the fundraising campaign paperwork. I don't know how many of you know about the paperwork but there are alot of obligations that need to be filled before sending in.(Campaign manager, co chair, publicity person, treasurer, and 20 volunteers in writing) . OK so I got everyone I need and that was really hard on me to ask people to do this, especially in my small town.You also need to send in the status of your transplant. OK lets say the committee says to wait another 6 months. Do I go ahead with the fundraising? Is it possible that I might not need a transplant if my bloodwork looks good??? My MELD is 11 and viral load is lower than its ever been,. Have light to moderate brain fog, major muscle aches, take lactulose 3 times a day but still only go 1 time, my spleen is very enlarged, liver still very enlarged, Dr lowered spirolacton down from 300mg to 200mg a day.Also lets say I started to get funds and don't need transplant for a long time, is this fair or right to the people that donated??? Can ESLD with HepC (told to get my affairs in order a year ago) actually get better. I take milk thistle but have taken that for yearsI am so confused now and I can honestly say its not brain fog right nowHELP....opinions please in Nevada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2008 Report Share Posted November 3, 2008 I did the same thing you are doing and still do it but not as much anymore. As you know I was a MELD 11 in ESLD. I spend most of my day wandering around trying to find stuff, like my glasses I made up folders and labeled them with the various tasks I have to do each day and put a calendar on the refrigerator and one in my purse which I transfer info to the refrigerator calendar. I DO ONE TASK AT A TIME Forget about the " what ifs " or other people. I can barely take care of myself now. I can no longer multi task and take care of the most important things first. I get names and record dates and times I talk to the various labs, hospitals, insurance, Doctors and prescription BS. So far so good except I now realize my husband is going to be more of a handicap than help. I have to think on that and make a decision. Hire a companion service or forget the whole thing and go when its my time or sell my parrots and move back to the frozen north and get set up there. There is always going to be something for the rest of our lives. Miracles happen and we could very well attain SVR and heal our livers so we do not need a transplant...but at what price. I thought I had it all figured out but must make some very hard decisions yet again. In the mean time I carry on and do the best I can. That's all we can do. It is great to have a group like this but I miss people .... real people contact. I look like a freak because I can no longer use hairspray to control my wildman hair and no makeup to hide the Gawd awful sores on my face which I think are psoriasis and itch like crazy and on and on and on > > > Hi Everyone, > > > Well I saw my/a Hep Dr on the 24th. He says my blood work looks really > good but he wants me to lose 35 pounds. I asked if he was going to > treat the dragon and he said not until I lose weight. My normal before > I found out i was sick weight is 145 and i am 5'6. I now weigh 176. He > was glad that I have continued not to smoke but said that substituting > ice cream for cigarettes could kill me too.(fatty liver disease) I told > him I had contacted a foundation that helps with fundraising for > transplants and that I needed a letter that said I was on the list. I > told him that the transplant committee wanted me 1yr alcohol free , at least 3 > months smoke free and to meet financial obligations that my insurance > (medicaid) would not pay as well as the temporary housing relocation and food for thirty days plus anything else. He said for me to lose the 30 pounds and we would talk again. > OK here is my situation. I am filling out the fundraising campaign paperwork. I don't know how many of you know about > the paperwork but there are alot of obligations that need to be filled > before sending in.(Campaign manager, co chair, publicity person, > treasurer, and 20 volunteers in writing) . OK so I got everyone I need > and that was really hard on me to ask people to do this, especially in > my small town.You also need to send in the status of your transplant. > OK lets say the committee says to wait another 6 months. Do I go ahead > with the fundraising? Is it possible that I might not need a transplant > if my bloodwork looks good??? My MELD is 11 and viral load is lower > than its ever been,. Have light to moderate brain fog, major muscle > aches, take lactulose 3 times a day but still only go 1 time, my spleen > is very enlarged, liver still very enlarged, Dr lowered spirolacton > down from 300mg to 200mg a day. > Also lets say I started to get funds > and don't need transplant for a long time, is this fair or right to the > people that donated??? Can ESLD with HepC (told to get my affairs in > order a year ago) actually get better. I take milk thistle but have > taken that for years > I am so confused now and I can honestly say its not brain fog right now > HELP....opinions please > in Nevada > Quote Link to comment Share on other sites More sharing options...
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