Guest guest Posted June 16, 1999 Report Share Posted June 16, 1999 Hi Talyne, How long have you hepC for? sad that you need a transplant, but I suppose the outcome of not having one is much worse. I hope you get on the list..... ine...aka. ( 'Tinkerbell'... ) > =================================== > > well, i was told by another specialist, (#4) that they think i need a liver > transplant. i am beyond the interferon/ribivarin/rebetron cocktail. so in > september, i'm supposed to go get evaluated to see if i get put on a list. > seems all indications are that i will be. but! i intend to continue my > present course of action and be healthy in every other aspect. just because > we have hep, doesn't mean we can't be healthy in other ways. so i am beefing > up my immune systems. send me your vibes! > have a good day. > talyne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 1999 Report Share Posted June 18, 1999 hi ine, thanks for your thoughts. i've had it for about twenty five years. i'm not sure i feel completely sad about the transplant. my FEAR lies in the immunosuppressant drugs i will have to be on if i do get it. anybody out there have any info on them? seems strange that my research now has to go toward learning about transplants, and all that is associated with them. part of me feels like i'm giving up, but part of me keeps hearing all the success stories....... all thoughts welcome have a great day, in peace talyne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 1999 Report Share Posted June 19, 1999 Hi Talyne, I am on the Transplant_Supportonelist. and it has many people with liver, kidney, pancreas,heart etc etc. transplants on it.. I feel if it is time for you to look at the prospect of having a transplant you might like to joine this group... you can learn alot of information there... My husband had a kidney transplant in 1985, and takes the immunosuppressant drugs, there are quite a few liver transplants on the onelist email group...we don't you think about joining... ine...aka. ( 'Tinkerbell'... ) =========================== > hi ine, > thanks for your thoughts. > i've had it for about twenty five years. i'm not sure i feel completely sad > about the transplant. my FEAR lies in the immunosuppressant drugs i will > have to be on if i do get it. > anybody out there have any info on them? > seems strange that my research now has to go toward learning about > transplants, and all that is associated with them. part of me feels like i'm > giving up, but part of me keeps hearing all the success stories....... > all thoughts welcome > have a great day, > in peace > talyne > > ------------------------------------------------------------------------ > Looking to expand your world? > > ONElist has 170,000 e-mail communities from which to choose! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2000 Report Share Posted June 24, 2000 <Are you on a transplant waiting list? If so, do you mind me asking where, and how long you've been on the list?> Jeanie Yes Jeanie I am. I go to the University of Pennsylvania. I have the greatest hepatologist and as soon as he saw my last biopsy results he was shocked and said technically I should be laying in a hospital bed awaiting transplant now but for some reason, my lil 20% that is working is doing real good. I've had all my tests done to determine transplant status and as of now I am a 2 because so far, nothing too bad is going on but my stupid memory. Biopsy was done April 19th. Saw doctor in May, went through last of tests last week and was put on transplant list. Sue :-) Sue, Are you on a transplant waiting list? If so, do you mind me asking where, and how long you've been on the list? Jeanie --- blue_eyes4you@... wrote: > Hi Deb, > Yes, I do get scared to be honest with you. I asked > him if I was losing > my mind and he said no. It's the hep and my amonia > level is probably > high as I am in end stage and hoping and praying for > a liver. Although I > am functioning on 20% of my liver, my hepatologist > says overall my blood > work is good except for sugar and WBC. My spleen is > enlarged and I hurt > like hell all over but I force myself to go out > every day and walk and > live. I will beat this as I am very strong-willed > but to be honest with > you, the scariest things has been my loss of memory > so your not the only > one. Hang in there! > Sue :-) > > <When you get forgetful, do you also get scared? I > do.......a > strange-sort-of > panic....like am i losing my mind? > I`m happy to know I`m not the only one....... > debmc> > > > ------------------------------------------------------------------------ > Was the salesman clueless? Productopia has the > answers. > 1/4633/12/_/96144/_/961906495/ > ------------------------------------------------------------------------ > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2000 Report Share Posted June 25, 2000 Sue, I've heard that the University of Pennsylvania is a great place to get listed. Pat, my hubby, is on the list at the University of Michigan .. almost 15 months now. He is currently living with approx. 7-8 % of his liver actually functioning. I can understand how you must be feeling, as I see how he is every day. But he is a pretty tough guy .. he is still working at least 10 -14 hours a day. I sure don't know how he is doing it, but I guess it's his way of holding on. Take care and have a great day. ===== Jeanie Oh Lord, let my words be tender and sweet, For tomorrow I may have to eat them. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2000 Report Share Posted June 25, 2000 Try also Jefferson University Hospital, in Phila. Pa. They do a lot of transplants and have expanded lately, so may have a larger base. They have a web site. Sue Ellen Bowman Re: transplant > Sue, > > I've heard that the University of Pennsylvania is a > great place to get listed. Pat, my hubby, is on the > list at the University of Michigan .. almost 15 months > now. He is currently living with approx. 7-8 % of his > liver actually functioning. I can understand how you > must be feeling, as I see how he is every day. But he > is a pretty tough guy .. he is still working at least > 10 -14 hours a day. I sure don't know how he is doing > it, but I guess it's his way of holding on. Take care > and have a great day. > > > > > ===== > Jeanie > > Oh Lord, let my words be tender and sweet, > For tomorrow I may have to eat them. > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2000 Report Share Posted June 25, 2000 Sue, Thanks for the info about Jefferson University Hospital. I'll check into it. Jeanie --- Sue_Bowman <Sue_Bowman@...> wrote: > Try also Jefferson University Hospital, in Phila. > Pa. They do a lot of > transplants and have expanded lately, so may have a > larger base. They have a > web site. > Sue Ellen Bowman > Re: transplant > > > > Sue, > > > > I've heard that the University of Pennsylvania is > a > > great place to get listed. Pat, my hubby, is on > the > > list at the University of Michigan .. almost 15 > months > > now. He is currently living with approx. 7-8 % of > his > > liver actually functioning. I can understand how > you > > must be feeling, as I see how he is every day. > But he > > is a pretty tough guy .. he is still working at > least > > 10 -14 hours a day. I sure don't know how he is > doing > > it, but I guess it's his way of holding on. Take > care > > and have a great day. > > > > > > > > > > ===== > > Jeanie > > > > Oh Lord, let my words be tender and sweet, > > For tomorrow I may have to eat them. > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2000 Report Share Posted June 25, 2000 Wow Jeanie, your husband must be one tough cookie. I was just ordered June 8 to stop working as I was falling asleep at work. The last time though was a little embarrassing as my head was on a black ink blotter. When I awoke at 3pm, I was in at 8:00 am, was I totally embarrassed! lol At least I can still laugh about it and remember it. Seems short term memory is the worst for me. I wish your husband the best. My prayers are with you and him. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2000 Report Share Posted June 25, 2000 Thanks for the information Sue Ellen. I was told to get on as many lists as I could and I think it's about time I did some research into that. Sue :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2000 Report Share Posted June 25, 2000 Sue, Thanks for your prayers. Ours are with you too. Yes, Pat is pretty tough, but it helps that we own our own company. If he gets really tired and needs a nap, he can take one, which he does almost daily. He only naps for about a half hour but says it's enough to get him going again. Take care, ===== Jeanie Oh Lord, let my words be tender and sweet, For tomorrow I may have to eat them. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2000 Report Share Posted June 25, 2000 I know they do a lot of transplants there, Merril is also in this area, I think. Most of the large hospitals have combined and do specific things in one area, so they can afford better programs and equipment, etc. Sue Ellen Bowman Re: transplant > > > > > > > Sue, > > > > > > I've heard that the University of Pennsylvania is > > a > > > great place to get listed. Pat, my hubby, is on > > the > > > list at the University of Michigan .. almost 15 > > months > > > now. He is currently living with approx. 7-8 % of > > his > > > liver actually functioning. I can understand how > > you > > > must be feeling, as I see how he is every day. > > But he > > > is a pretty tough guy .. he is still working at > > least > > > 10 -14 hours a day. I sure don't know how he is > > doing > > > it, but I guess it's his way of holding on. Take > > care > > > and have a great day. > > > > > > > > > > > > > > > ===== > > > Jeanie > > > > > > Oh Lord, let my words be tender and sweet, > > > For tomorrow I may have to eat them. > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 Dear Jes, I am status 2, which means the call could come any day. I hit the ceiling every time the phone rings. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 - Congratulations and best of luck. I will be thinking about you. Fran in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 ... I can't begin to imagine ... Good Luck to you! JES > Dear Jes, > I am status 2, which means the call could come any day. I hit the ceiling > every time the phone rings. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 : All my prayers and best wishes. I'm not sure, however, why you need a transplant. You sound like you're all heart already. Best. Bill Re: Re: Transplant Dear Jes, I am status 2, which means the call could come any day. I hit the ceiling every time the phone rings. Please visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 ,My thoughts and prayers will be with you. My nephew, age 24 had a transplant in Feb. of 1999 in Pittsburgh, PA. He came through it well. His new heart is doing great. He does have some problems with side affects from the meds but he can now breath well and do a lot of things.Ruth in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2005 Report Share Posted March 13, 2005 Yes, my transplant was May 15th 1995. Received the call on Sunday Mother's Day. I kept saying over and over during prep "that poor mother that had to donate her son's organs on mother's day & I want a brave pill." I have spoken with donor mother. Jo Lynne http://www.designsbyjolynne.net/ My personal web page under construction - under Family and Friends you can see a photo of me 13 days post transplant getting ready to go to church. Do not have on my hard drive - searched so thought this would be a way for you to see. [ ] transplant JoLynne,Have you had your transplant since 1995??? Anything with longivity sounds good to me, gives me hope. GunghoKelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2005 Report Share Posted March 13, 2005 Jo Lynne, Thanks for sharing, I hope that you are doing well. And wow, that would be hard, " Mother's Day " . Kelli > Yes, my transplant was May 15th 1995. Received the call on Sunday Mother's Day. I kept saying over and over during prep " that poor mother that had to donate her son's organs on mother's day & I want a brave pill. " I have spoken with donor mother. > Jo Lynne > http://www.designsbyjolynne.net/ My personal web page under construction - under Family and Friends you can see a photo of me 13 days post transplant getting ready to go to church. Do not have on my hard drive - searched so thought this would be a way for you to see. > [ ] transplant > > > > JoLynne, > > Have you had your transplant since 1995??? Anything with longivity > sounds good to me, gives me hope. > > Gungho > Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2006 Report Share Posted March 17, 2006 Clara - I can't offer a whole lot... just that the last time I was up at the UW in the transplant clinic there were some people in there doing the whole post-TX followup, and staying in nearby apartments. When I went through the listing process the staff was very concerned with living arrangements, but fortunately I live within 45 minutes of the hospital. I am betting that once your sister is out of crisis mode the social workers will assist. Now, as to how one *affords* this, I have no idea. Loans, fundraisers, disability insurance etc.? In any case, if/when you make it up to see her, get in touch with me outside the group and let me know if/how I can help. If I had a big enough house for guests you bet I'd offer!!! Shirl (Tacoma) > > I know I am not on the right site , but I thought you can help anyway. My sister is on for a lung Transplant, she is very ill and somehow she is on the priority list or something. We were told today some of the logistics. ... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2006 Report Share Posted September 14, 2006 Hi Dot, This group seems to have numerous members & someone will hopefully have the answers that you're looking for. It may not be caused by the antibiotic that you used but some other medication. We all realize that our outcomes could be dim but try to stay optimistic. Are you considering telling her to put on the list? I would jump at the opportunity if & when it is presented to me. (But I have PBC & know that it will give me a better quality of life -and the effects of this disease will return slowly). Hang in there. it may take a few days but someone in your situation will respond. Best of luck...... Dot <dot@...> wrote: Hi, I have been a member of this group for ages, but I don't know that I've ever posted before. I have a dilemma, my Specialist has told me that I can push her to put me on the transplant list - that was like a kick in the guts, made me realise that I'm not infallable after all and there is a chance that I might die [whether I have the transplant or not]. My problem is I have Drug Induced Cirrohsis [caused from Flucloxacillin 17 years ago] and I really would love to be able to talk to someone, if there's anybody in this group, who has had or knows someone, with the same disease. Ideally, I would love to talk to someone with drug induced hep who has had a transplant - there is such a lack of information for us on drug induced, everyone seems to have AIH or PBC and although the symptoms are sooo similar, the risk relating to transplant is different, apparently more people die from drug induced. Please is there anyone out there who has DILD who wants to talk about it?? Or if anyone knows of someone, perhaps they could ask them if they would talk to me. Thanks very much for being there, if it weren't for sites like this one it would be so much harder for us all to cope, don't you agree You're all in my thoughts Dot C [sydney Australia] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 , I will be praying for you guys. We just did the preliminary search for ph in the NMDP and isolated registries & got the results yesterday. He has one potential donor, but this donor would have to be tested further to see if he is a suitable match for ph. The donor was only tested at the antigen level and at the time he was tested he did not have C locus testing done. Trying to sort through the news at the moments. ph has common alleles that are combined in an uncommon way, thus making him have uncommon haplotypes. We go back in March to repeat the boys' bone marrow biopsies. I'll check out your website. Peace be with you, Pattie " If at any time the going gets harder in our interior struggle, that will be a good moment to show that our love is in earnest. " ~St. maria Escriva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 , I will be praying for you guys. We just did the preliminary search for ph in the NMDP and isolated registries & got the results yesterday. He has one potential donor, but this donor would have to be tested further to see if he is a suitable match for ph. The donor was only tested at the antigen level and at the time he was tested he did not have C locus testing done. Trying to sort through the news at the moments. ph has common alleles that are combined in an uncommon way, thus making him have uncommon haplotypes. We go back in March to repeat the boys' bone marrow biopsies. I'll check out your website. Peace be with you, Pattie " If at any time the going gets harder in our interior struggle, that will be a good moment to show that our love is in earnest. " ~St. maria Escriva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 , Praying for you guys. Amy, mom to 4, CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 , Praying for you guys. Amy, mom to 4, CVID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2007 Report Share Posted January 19, 2007 Best wishes to you and your family- you will be added to our prayer list Sue Petrelli kristinsmith <kristinsmith@...> wrote: Hi Everyone, I was wanting to share that we have decided to move forward with the bone marrow transplant at this time. We are tentatively planning Conner's transplant for late spring/early summer. We are still looking for possible donors, but we were able to come up with some pretty close matches. Our hope is that Conner will be cured of his immune deficiency, but we know there aren't any guarantees. It was a tough decision, but something that our immuno, the docs at the NIH, and the transplant doc feels to be in Conner's best interest. They feel that his life expectancy will be significantly reduced without it (thanks to the NEMO deficiency). I also wanted to let you all know that I'm going " no email " for awhile, I just can't seem to keep up with it at the moment (I'm in too many groups these days!). If anyone would like to email me privately, feel free to do so - or drop by our website for updates: www.cure4conner.org Take care, Mom to Conner (12, NEMO and MBL Deficiency, Hayden (12, MBL Deficiency) Evan (12, MBL Deficiency) and Kelsey - (10, NEMO - expressive carrier and MBL Deficiency) Please visit us at www.cure4conner.org Quote Link to comment Share on other sites More sharing options...
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