Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 , my transplant was 2/23/98. I am just short of four years. 100% better is an interesting question. I am only 80% as good as I was 20 years ago at 27 when first diagnosed, but I am 400% better than 1997, 5 years ago when I hit bottom. Transplant is of course a big decision and it has a major effect on your life. It has been a rough road yet I would do it again in a minute. I am back to work, not really limited in any way. I do get tired but not the way I used to w/ AIH, and certainly with liver failure. I tend to minimize all the other seemingly more minor problems, I think because at on time , not too long ago , things were soooo bad. It would be good to hear from others, Bonnie P, Gayle, Barbara (although I haven't seen her post for a while, and there are several other). Maybe someday we can get Genny & Cheryl to get Randy & Jodi to give their views also. Patty -----Original Message-----From: dagelo [mailto:dagelo@...]Sent: Saturday, January 26, 2002 10:22 AM Subject: Re: [ ] Patty from /FL Hi Patty, Thanks for the reply. I live in Melbourne, FL, so either center is about the same difference away. How long ago was your transplant and are you feeling 100% better? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2002 Report Share Posted January 26, 2002 Hi Patty, Again, thanks for the reply. I believe I have had AIH for at least 10 years although DX was 1/2000 . I am now 46, raising 2 teenagers, (their dad died of brain CA 1997). I have been working since I was 16, then went to college, worked as an ER and ICU nurse for 20 years, and was teaching college in WPB when I got sick. I just want to feel better. If Bonne P., Gayle, Barbara, or others with transplant history can write to me, please do...my email is dagelo@.... I send my prayers and love to you Patty, and to all, denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 In a message dated 1/30/02 4:30:49 PM Pacific Standard Time, dagelo@... writes: Hi Gayle, Thanks so much for responding to my mail. I have completed all the pre-tx workup, but the brain MRI showed abnormal "spots" which the neurologist thought was MS, the spinal tap was negative for MS but he won't clear me for surgery because of my coagulopathy (abnormal blood clotting). Now, he thinks the "spots" show mild strokes along with a definite hepatic encephalopathy diagnosis. Anyway, I have had no further bleeds and am debating about seeing the tx team at UF in Gainesville (my alma mater). Where was your tx? How long was the surgery? Did you use Prograf and get headaches? Do you find that you are less fatigued since tx? I continue to pray for you. God bless, /FL AIH 1/2000, end stage cirrhosis You certainly have a lot to figure out all at once! This situation must be quite frustrating. Would MS have disqualified you for tx? Have the encephalopathy and mild strokes been discernable to you in your daily life? Are you working now? -- forgive me if you've told me before, please. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 In a message dated 1/30/02 4:30:49 PM Pacific Standard Time, dagelo@... writes: Hi Gayle, Thanks so much for responding to my mail. I have completed all the pre-tx workup, but the brain MRI showed abnormal "spots" which the neurologist thought was MS, the spinal tap was negative for MS but he won't clear me for surgery because of my coagulopathy (abnormal blood clotting). Now, he thinks the "spots" show mild strokes along with a definite hepatic encephalopathy diagnosis. Anyway, I have had no further bleeds and am debating about seeing the tx team at UF in Gainesville (my alma mater). Where was your tx? How long was the surgery? Did you use Prograf and get headaches? Do you find that you are less fatigued since tx? I continue to pray for you. God bless, /FL AIH 1/2000, end stage cirrhosis You certainly have a lot to figure out all at once! This situation must be quite frustrating. Would MS have disqualified you for tx? Have the encephalopathy and mild strokes been discernable to you in your daily life? Are you working now? -- forgive me if you've told me before, please. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 In a message dated 1/30/02 5:23:24 PM Pacific Standard Time, dagelo@... writes: Hi Harper, Fortunately MS was ruled out. I did however have a total hysterectomy because of cervical cancer, docs said cancer usually disqualifies from tx. I am on disability from my former employer and have just qualified for SSDI. Yes, my primary complaint is the change in cognitive abilities due to high ammonia levels in my brain (verified by GI, Neuro, Psych)...and of course fatigue, and the constant fear of having another bleed (hospitalized 4 times since 1/2000 for bleeding esophageal varices). The encouragement and prayers and my faith in God have sustained me. /FL I'm very sorry to hear of your difficulties. I understood that you found you don't have MS. I was just curious about whether MS is considered an automatic "no transplant" condition. I'm sorry, but I'm confused about whether your hysterectomy for cervical cancer has definitely ruled you out for a transplant. A well-known 77-year-old who has had AIDS for years recently received a transplant, so perhaps the rules are becoming more liberal. The cognitive problems you speak of certainly don't show up in your messages. Your responses are unusually considered, logical, and helpful. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 Hey Guy's, Isn't that Lactulose great stuff. (Ha Ha) If taking 13-16 pills a day isn't bad enough then you have to take that syrupy sweet stuff. It doesn't get much better than Lactulose. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 Hi Harper, Fortunately MS was ruled out. I did however have a total hysterectomy because of cervical cancer, docs said cancer usually disqualifies from tx. I am on disability from my former employer and have just qualified for SSDI. Yes, my primary complaint is the change in cognitive abilities due to high ammonia levels in my brain (verified by GI, Neuro, Psych)...and of course fatigue, and the constant fear of having another bleed (hospitalized 4 times since 1/2000 for bleeding esophageal varices). The encouragement and prayers and my faith in God have sustained me. /FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 , you mention high ammonia levels....how do you find that out? Are there some symptoms that you noticed? Wow.... I am really sorry that you have so many problems with all of this! debby Re: [ ] , transplant experience Hi Harper, Fortunately MS was ruled out. I did however have a total hysterectomy because of cervical cancer, docs said cancer usually disqualifies from tx. I am on disability from my former employer and have just qualified for SSDI. Yes, my primary complaint is the change in cognitive abilities due to high ammonia levels in my brain (verified by GI, Neuro, Psych)...and of course fatigue, and the constant fear of having another bleed (hospitalized 4 times since 1/2000 for bleeding esophageal varices). The encouragement and prayers and my faith in God have sustained me. /FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 , you mention high ammonia levels....how do you find that out? Are there some symptoms that you noticed? Wow.... I am really sorry that you have so many problems with all of this! debby Re: [ ] , transplant experience Hi Harper, Fortunately MS was ruled out. I did however have a total hysterectomy because of cervical cancer, docs said cancer usually disqualifies from tx. I am on disability from my former employer and have just qualified for SSDI. Yes, my primary complaint is the change in cognitive abilities due to high ammonia levels in my brain (verified by GI, Neuro, Psych)...and of course fatigue, and the constant fear of having another bleed (hospitalized 4 times since 1/2000 for bleeding esophageal varices). The encouragement and prayers and my faith in God have sustained me. /FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2002 Report Share Posted January 31, 2002 Wow ! I cannot believe that can be such a problem! I am in the bathroom all the time, so guess I wouldn't need to worry! debby Re: [ ] , transplant experience Hi debby, The ammonia levels are found in a blood sample. I do keep it fairly under control with Lactulose which is a laxative that keeps the proteins out of the gut...the ammonia is formed when a sick liver cannot detox proteins. /FL Quote Link to comment Share on other sites More sharing options...
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