Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Does your husband have a liver specialist? The doctors are the ones that make that call, usually. > My husband is in mid- stages of sclerosing cholangitis . Itching has > begun and we would like to know what is next. I would like to know > at what point one begins the process of getting on a list for liver > transplant. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2004 Report Share Posted March 16, 2004 Unfortunately PSC doesn't have a logical timeline. No one can say if you're itching today, than in 2 weeks this will happen, and a week later, that will happen. Some people have been itching from day 1, others are never really bothered by that symptom, even as they're being wheeled in for transplant. Likewise there's no timeline for progression. Every case is different. The decision on when to start the transplant evaluation will be made by your hepatologist, usually based on labs and symptoms. A minimum MELD score is required (6, I think?). Every hospital/region varies somewhat on how long patients have to wait after listing. If you have a living donor lined up, tx can come a lot quicker, before your husband is really sick. Pam (mom to Quantell, 13, dx 1996, tx 2001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2004 Report Share Posted April 11, 2004 My husband is in the mid stage of psc. Fatigue is one of his main problems. However itching has begun. He takes actigall and asacal daily. (very expensive) I would like to hear from others who have been at this point and hear how they handle it. Our Dr. just nods his head as if to say Yup, that is what is expected. I'd also like to know how far this has to progress before one can start procedure to get on waiting list for a liver transplant. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 MY SON HAS SCLEROSING CHOLANGITIS HE WAS DIAGNOSED WHEN HE WAS 19 HE IS NOW 22. HE HAS BEEN IN AND OUT OF THE HOSPITAL FOR ERCP WITH STENT PLACEMENT AND THEN SUBSEQUENTLY HE DEVELOPS AN INFECTION SO HE IS BACK IN THE HOSPITAL AND H E ALSO HAS BOUT OF EXTREME ITCHING, I WOUL LIKE TO HER FROM ANYONE. MY DAUGHTER IS 18 AND SHE HAS A REALLY HARD TIME DEALING WITH THIS. SHE THINKS HE IS GOING TO DIE. SHE WANTS TO GIVE HIM PART OF HER LILVER WHEN THE TIME COMES. MY EMAIL ADRESS IS ANGIENOEMAIL@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2004 Report Share Posted June 6, 2004 Dear Angie, It is hard when someone close to you is hurting. I hope your daughter will remember to enjoy the moments she has now. No one knows what the future will bring. Her brother might get hit by a car tomorrow. PSC is a funny ailment. It can take a long time to fully develop. We need to rally around those who are suffering and be cheerful. It ain't easy but it should be done. Who knows tomorrow the docs may make a breakthrough. I hope this helps. Sincerely, Rob (Mr. Itch) PSC since 2001 ________________________________________________________________ The best thing to hit the Internet in years - Juno SpeedBand! Surf the Web up to FIVE TIMES FASTER! Only $14.95/ month - visit www.juno.com to sign up today! Quote Link to comment Share on other sites More sharing options...
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