Guest guest Posted February 10, 2008 Report Share Posted February 10, 2008 --- I was shocked at the " do you ever feel like jumping off of a bridge " question. What the doctor was trying to get at was my quality of life and where my head was with it all. He said they don't like to do a transplant in stage one liver damage, but if your quality of life is so bad - itching, not sleeping, thoughts of suicide then they would consider stepping thing up. As far as Rifampin, my liver specialist does not like that drug because it give false readings for the ALK PHOS. and so she says it would be too hard to tell if it's the drug raising the levels or my bil ducts getting worse. Sheesh!! So for now I am stuck with the Colostyramine(sp) or Questran as it is also called. Afer my colon surgery last may and the slow recovery that i've had. I'm nervous as hell to step any other surgery up. My friends and family all tell me they think I'm amazing because I really do manage to stay the same happy, upbeat person I've always been. Only my husband who is my rock gets to see me fall apart when things get too hard to handle and I want to scream and cry. When I do have my mini breakdowns as I call them, it's such a release of frustration. And with that I can put my feelings of doom and sadness for the things I'm afraid my husband and I may miss out on together. So much of my sadness is for my wonderful husband who is having to go through this with me and he feels so helpless. Wow! I wasn't planing on writing all of that and now I've had a cry sitting here all by myself and somehow feel I may be able to sleep now. Weird and cleansing. So sorry for all of that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 I have to jump in here and say that if the Hepatologist is concerned that Rifampin is going to make your Alk Phos elevate, it is a simple matter of doing the labs to track this and watch the trend of the LFT's. All docs had the same concern. Rifampin can elevate your LFT's but that is not always the case. A lot of patients do fine while taking Rifampin, evidence the fact that it can be used in the treatment of TB. Some patients do indeed get elevated LFT's from the Rifampin but in that case they are really elevated, usually right away. I would really try and revisit that with your doc only because it has the potential to make your quality of life so much better. AND I would shy away from having a Tx just to improve my quality of life. I wanted to get as much mileage out of my own liver as I could before swapping it. Ali BE A LIVE DONOR AND AN ORGAN AND TISSUE DONORAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.Livertx-PSC this a site that deals with Transplant issues for PSCers.also - www. a support group for folks with PSC and their familiesWho's never won? Biggest Grammy Award surprises of all time on AOL Music. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 A & J M wrote: > > At least 4 people have offered for me (most related by marriage, one > friend). It's been 8 years now, with no indication it will be needed > (knock on wood). I hope that trend continues. > That's similar to what happened to me. I had several people offer to be donors, but I wasn't sick enough to need it. Then when I did get sick enough, I jumped to the top of the list pretty quickly and got my transplant, so the traditional system worked well for me. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 athan, Do you feel that the people who offered would really have given you half of their liver? It is easy enough to offer, but doing it is a different matter. Regards, Chaim Boermeester, Israel From: [mailto: ] On Behalf Of athan Sent: Monday, February 11, 2008 12:42 To: Subject: Re: Re: Live Liver Transplant A & J M wrote: > > At least 4 people have offered for me (most related by marriage, one > friend). It's been 8 years now, with no indication it will be needed > (knock on wood). I hope that trend continues. > That's similar to what happened to me. I had several people offer to be donors, but I wasn't sick enough to need it. Then when I did get sick enough, I jumped to the top of the list pretty quickly and got my transplant, so the traditional system worked well for me. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Chaim Boermeester wrote: > > athan, > > > > Do you feel that the people who offered would really have given you > half of their liver? It is easy enough to offer, but doing it is a > different matter. > Some of them would have. I think some of them wouldn't have worked out due to their health though, so I'm not sure if a live donor would have actually ended up being a real option for me even if I had pursued it. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 > > ... He said they don't like to > do a transplant in stage one liver damage, but if your quality of life > is so bad - itching, not sleeping, thoughts of suicide then they would > consider stepping thing up. As far as Rifampin, my liver specialist > does not like that drug because it give false readings for the ALK > PHOS. and so she says it would be too hard to tell if it's the drug > raising the levels or my bil ducts getting worse. So the transplant team is considering a tx based on your quality of life (QOL) but the hep won't consider rifampin to improve it because your test results may be influenced by the rifampin! I think that is a weak excuse for not treating you. My questions to her would be - What action would you take with my treatment if my Alk Phos changed? If none, why is it so important to keep my medications unchanged? If you expect a change in Alk Phos when I start rifampin, why can't we monitor that change and use that as the new reference level? I would put your QOL ahead of making it easy to track changes in Alk Phos, which while they do indicate bile duct activity are not critical indicators of liver function. Tim R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 BE A LIVE DONOR AND AN ORGAN AND TISSUE DONORAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.Livertx-PSC this a site that deals with Transplant issues for PSCers.also - www. a support group for folks with PSC and their familiesThe year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Good for you! It's hard to remember sometimes that we have power in this situation as well. Good luck with your doc. Ali BE A LIVE DONOR AND AN ORGAN AND TISSUE DONORAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.Livertx-PSC this a site that deals with Transplant issues for PSCers.also - www. a support group for folks with PSC and their familiesThe year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Dear Liz, When I said I wanted to get as much out of my liver before I swapped it, I meant' that Tx with a live donor is not something to undertake lightly. I waited until I could wait no more. Your doc has a great point about not waiting until you are debilitated with Liver disease. For me, it just worked out that as I was going downhill, the chance for Simon to donate to me became a reality. It sounds like you had some of the same issues I did. The fatigue is real however. That's the liver not working as well as it used to. Have you had any issues with HE(Hepatic encephalopothy) I didn't realize until after the Tx how bad it was for me. But as I didn't burn the house down or wreck the car, it's all good. Ali BE A LIVE DONOR AND AN ORGAN AND TISSUE DONORAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.Livertx-PSC this a site that deals with Transplant issues for PSCers.also - www. a support group for folks with PSC and their familiesThe year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Ali, The Dr. from the transplant team and I both decided my quality of life did not warrent a transplant at this time. He said you really only want to transplant when your life is at risk, not just when you are really uncomfortable... I was happy with that. As far as the Rimafin, that will be part of our discussion again for sure. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 Tim, Thanks for your input, I have printed your response to refer to when I see my Hep. again. Ali and Tim you both have given me great arguements to help me in my discussion with the Dr. The transplant team Doctor recommends I try the Rimafin and he has several others to try as well. It's my Hepatologist who is the sticky one. I asked her to get back in contact with the transplant team Dr. and make my life easier. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2008 Report Share Posted February 11, 2008 > > > I wanted to get as much > mileage out of my own liver as I could before swapping it. > > Ali Hi - I'm reading these posts with much curiousity. I have just been listed in December with a MELD of 16 (not too terribly high) and am eligible for transplant at Columbia-Presbyterian in NY (they transplant starting at MELD 15). The Chief surgeon recommends I get my transplant (if a live donor is eligible) sooner rather than later as I would recover much better in a somewhat " healthy " state. But then I've read in the past that other doctors want their patients to get the most out of their liver and wait until absolutely necessary. I feel pretty good. I'm still working full time and get tired, but not sure if it's from the " daily grind " of life in general or actual fatigue from PSC; however, it's not debilitating. My only symptoms are jaundice, mild ascites, and occasional abdominal pain. Just wondering what other PSCer's docs say. Liz (CT) > > > > > **************Biggest Grammy Award surprises of all time on AOL Music. > (http://music.aol.com/grammys/pictures/never-won-a-grammy? NCID=aolcmp003000000025 > 48) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2008 Report Share Posted February 12, 2008 You know Liz, I felt the same way. I didn't want it until I needed it but I on the other hand I didn't want to be really ill when I had it either. You sound like you are in a good space right now. Just keep working it. Ali BE A LIVE DONOR AND AN ORGAN AND TISSUE DONORAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.Livertx-PSC this a site that deals with Transplant issues for PSCers.also - www. a support group for folks with PSC and their familiesThe year's hottest artists on the red carpet at the Grammy Awards. AOL Music takes you there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2008 Report Share Posted February 12, 2008 > Have you had any > issues with HE(Hepatic encephalopothy) I didn't realize until after the Tx how > bad it was for me. But as I didn't burn the house down or wreck the car, it's > all good. > > Ali > > Ali - thanks for your reply. No, I haven't had any HE issues (thank goodness), just the symptoms I mentioned along with itching. My husband is pushing me to get the transplant (as long as I have a qualified donor) asap, but I'm obviously terrified of having the surgery! I told him " I don't want to get too sick to get it, but I want to be sick enough to want and be ready for the surgery " and so far I feel ok. But, he doesn't get it. I cry when I get an ERCP for goodness sake, b/c I'm such a wimp and scared. Can you imagine when it's time for transplant! anyway, I'm so happy for you that you are doing so well. I'm really going to miss being at the conference in FL - the one in PITT was terrific and this one coming up sounds fantastic! I wish you the best with your continued " new " life! Liz (CT) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2008 Report Share Posted February 12, 2008 Liz, My doctor says if a live donor is available she will not let me get too sick before transplant. Sounds like there is a fine line of being sick enough and not too sick. Karyn Quote Link to comment Share on other sites More sharing options...
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