Hello,
I was recently diagnosed with UC and PSC Three weeks ago. I have been reading horror stories that when my liver eventually fails, that the 5 year survival rate is only at best 60-70%, plus roughly about a 20% chance of PSC recurring in the new liver.
Has anyone on here whose had a transplant provide me with any insight? How did you feel after your transplant? How did the immunosupressants affect your colitis(if you have UC as well)
Thank you,
Matthew
I’d like to know too. My son was diagnosed 3 weeks ago with PSC and all I can think about is that he is going to die and that I can’t watch that happen. He is my one and only and I can’t lose him.
Hello Jeffsmom,
I know if you start reading online about PSC just after someone is diagnosed it can really be a frightening time for you. I went through similar fears at first. The more you educate yourself on the disease and align yourself with specialists who deal with liver disease and specifically know about PSC your heart should rest a lot easier. There's so much they can do to keep us going and still have a good quality of life. Yes there may come a day when you have to have that transplant and things look bleaker but there's still always hope for a transplant as well, plus with living donor options that increases the opportunities to get one. I was diagnosed with PSC in 2011 and have had 4 surgeries called ERCP's where they go into the bile ducts endoscopically and open them up so that they can once again flow that precious bile we all need to survive. I have my 5th one this Friday. Yes, there are risks even with this procedure but if you find a good team of physicians in a teaching hospital or one with a transplant center they are going to have people that do this every day that will be well equipped to help you. Have hope and do all you can to encourage your son. Please feel free to start new discussions on any question you might have and we will all do our best to answer them as best we can.
Regards,
Mark
Mark, thank you so much. Yes, this is extremely frightening as a mother. We are seeing a team at Weill-Cornell in NY. We say Dr. Robert Brown last week and next week we will a colon rectal surgeon and a GI. I forget the surgeons name but GI is Dr. Boswell. I also have an excellent ERCP doctor at our local medical school in NJ. She diagnosed him after doing a liver MRI and then doing an ERCP. At that time she cleaned out the bile ducts and Jeffs billrubin has gone back to normal. All of this came out of left field for us. I never heard of this disease. After all the research I did on UC, never anywhere was it ever mentioned. Doctors never mentioned it. But I’m getting an education now, that’s for sure! As things come up, believe me, I’ll be asking lots of questions. Thank you for your help!
Dianne
Dianne,
This is a great place to come to for support and answers. I can’t imagine my life without it, really. The folks here are not only dealing with it first hand and knowledgable, but are compassionate and always there. Good thing you found these wonderful folks to help you through this new and sometimes icky “normal”. Thinking of you.
Jeffsmom~
I can totally understand your feelings there. My own son, and also only child was diagnosed with PSC when he was 11(in Jan. 1998). I cried many tears, and was so afraid for him, as all I knew about liver disease and transplants back then was very scary. Once my son's medical care was transferred over to a pediatric hepatologist at Univ. of Florida(Dr. Regino Gonzalez), were started realizing there really was hope, as we personally talked with transplant surgeons and learned lots of positive info regarding treatments and the outcomes of transplants. Our son stayed stable for about 2 years, then started to have an episode of cholangitis once a year. They decided to place him on DS Septra which kept the cholangitis away. Later, in high school, while doing a MRCP, they discovered esophogeal varices, which they banded. Once, he turned 21, his ped. hepatologist recommeded for us to drs. at Florida Hospital transplant program which was only about 45 min. from us. Again, his PSC stayed stable until Feb. 2012 when his liver numbers suddenly jumped. A MRI scan was done, and three small growths with their own blood supply showed up on his liver. He was immediately placed on the liver transplant list. The drs. went over the complete process with us and the success rates were actually more like in the 95% range, plus they said the transformation after transplant is quite significant for these folks---they instantly have no more pain, extreme fatigue, jaundice, itching, etc.(all the symptoms our son was now having). Our son was transplanted June 2012, it was truly the best gift he could have ever gotten! His surgery was only about 5 hrs. and only needed 1 unit of blood. The next morning, he was alert and talking to us and saying he felt great!!! he spent 10 days in the hospital, then came home. He was like the energizer bunny---I had not seen my son feel that good since he was 7 years old!!!!!!! By January, he was back to college and his part-time job. You would never know he was ever sick a day, unless he showed you his scar. My advice, take each day one at a time. Make sure your son has a pediatric hepatologist if he is under 18 and if over 18, a hepatologist. GI drs are great, but you really want a hepatologist for this disease on your team of drs. I hope I have helped you and answered some of your fears. Sincerely, Barbara
Dianne,
This is a great place to come to for support and answers. I can't imagine my life without it, really. The folks here are not only dealing with it first hand and knowledgable, but are compassionate and always there. Good thing you found these wonderful folks to help you through this new and sometimes icky "normal". Thinking of you.
Thank you! I am very grateful that I found this sight. Met already has been extremely helpful.
Thanks again
Dianne
Dolphin5 said:
Dianne,
This is a great place to come to for support and answers. I can’t imagine my life without it, really. The folks here are not only dealing with it first hand and knowledgable, but are compassionate and always there. Good thing you found these wonderful folks to help you through this new and sometimes icky “normal”. Thinking of you.
Barbara, thank you so much for your reply. We found a great hematologist in NY at Weill-Cornell. He was recommended to us by a friend who happens to be a liver transplant doctor at Leahy clinic in Boston. Right my son has an illostomy that needs a tack down to his j-pouch. We had a boat load of complications over the winter so they disconnected him in March and gave him back his illostomy. I thought we were going to be fine. He was handling everything so well! I took off and went to Florida for a few weeks. My husband and son flew down and we went to Disney, had a great time even though Jeffrey was fairly tired. But through the last year, he is always tired. Plus he is 24 and on the Austin spectrum. So we do have a lot going on. Just when you think everything is going well and you can breath, we got slapped with this. I’m grateful I was able to be in Florida for 5 weeks. It was a nice break before the floor dropped out from underneath me. But, while Jeff is doing just fine, I’m still in shock. I know he is scared, but he keeps saying well at least I don’t have cancer! I’m glad to hear your son is doing well, it gives me hope. I’m just trying to take one day at a time, and I’ll get used to this “new normal” too. Dianne
Barbara said:
Jeffsmom~
I can totally understand your feelings there. My own son, and also only child was diagnosed with PSC when he was 11(in Jan. 1998). I cried many tears, and was so afraid for him, as all I knew about liver disease and transplants back then was very scary. Once my son’s medical care was transferred over to a pediatric hepatologist at Univ. of Florida(Dr. Regino Gonzalez), were started realizing there really was hope, as we personally talked with transplant surgeons and learned lots of positive info regarding treatments and the outcomes of transplants. Our son stayed stable for about 2 years, then started to have an episode of cholangitis once a year. They decided to place him on DS Septra which kept the cholangitis away. Later, in high school, while doing a MRCP, they discovered esophogeal varices, which they banded. Once, he turned 21, his ped. hepatologist recommeded for us to drs. at Florida Hospital transplant program which was only about 45 min. from us. Again, his PSC stayed stable until Feb. 2012 when his liver numbers suddenly jumped. A MRI scan was done, and three small growths with their own blood supply showed up on his liver. He was immediately placed on the liver transplant list. The drs. went over the complete process with us and the success rates were actually more like in the 95% range, plus they said the transformation after transplant is quite significant for these folks—they instantly have no more pain, extreme fatigue, jaundice, itching, etc.(all the symptoms our son was now having). Our son was transplanted June 2012, it was truly the best gift he could have ever gotten! His surgery was only about 5 hrs. and only needed 1 unit of blood. The next morning, he was alert and talking to us and saying he felt great!!! he spent 10 days in the hospital, then came home. He was like the energizer bunny—I had not seen my son feel that good since he was 7 years old!!! By January, he was back to college and his part-time job. You would never know he was ever sick a day, unless he showed you his scar. My advice, take each day one at a time. Make sure your son has a pediatric hepatologist if he is under 18 and if over 18, a hepatologist. GI drs are great, but you really want a hepatologist for this disease on your team of drs. I hope I have helped you and answered some of your fears. Sincerely, Barbara
I was diagnosed with UC in 1986, then PSC in 1994-had a transplant in 2007. I have my life back. For me, yes, the PSC came back and after a Hepatic Revision-I have done very well. I work, garden, do the things I enjoy in life. I will forever be glad I said yes to "Transplant" and have to say I have had few set-backs through the past 8 years. I know each case will be different. I have never "been cured" of the UC-I take meds that keep it under control. That is a blessing. My husband said within a few hours my color had gone from "pumpkin" orange to normal-I was up and walking around the next day-some are home in a week, others have set-backs and take longer, I can't say there are no risk-there always are with any surgery. Embrace your life-keep on, keeping on. I'll be 60 in January and I look forward to a future with not being tired and itchy and just feeling sick all the time. Life is a 180 for me. Prayers things can go as well for you. I am actually now down to .5 milligrams of immunosuppressant twice a day-it doesn't phase me. The steroids at the beginning of this journey were not much fun-but I was weaned off them in about 6 months totally-never looked back.
Marietta,
Can you explain in more detail your Hepatic Revision? Thank you!
Crewmom
Marietta07 said:
I was diagnosed with UC in 1986, then PSC in 1994-had a transplant in 2007. I have my life back. For me, yes, the PSC came back and after a Hepatic Revision-I have done very well. I work, garden, do the things I enjoy in life. I will forever be glad I said yes to "Transplant" and have to say I have had few set-backs through the past 8 years. I know each case will be different. I have never "been cured" of the UC-I take meds that keep it under control. That is a blessing. My husband said within a few hours my color had gone from "pumpkin" orange to normal-I was up and walking around the next day-some are home in a week, others have set-backs and take longer, I can't say there are no risk-there always are with any surgery. Embrace your life-keep on, keeping on. I'll be 60 in January and I look forward to a future with not being tired and itchy and just feeling sick all the time. Life is a 180 for me. Prayers things can go as well for you. I am actually now down to .5 milligrams of immunosuppressant twice a day-it doesn't phase me. The steroids at the beginning of this journey were not much fun-but I was weaned off them in about 6 months totally-never looked back.
there is a risk to every medical choice we make i think like this what choose do i have i must dwell on the positive yes there is a chance of psc reacurring but it can takes yrs to get bad again at least you have those yrs and the way things are moving they are now printing organs so next time around we may get our own organ no rejection and live forever
It was found about a year after my transplant that the PSC was trying to rear it's ugly head again. We did put in a tube and things rolled along for some time w/me going in for a check/change of the tube for several months. This wasn't a situation that should go on for but so long. Yes, I was still taking my meds for the PSC-but it was trying to do the whole clog thing again. The hepatic revision basically removed my biliary tubing and has my liver emptying into my digestive system without the risk of a clog. I was teaching at the time and my doctors were actually great and I had the surgery over a school break and I lost little time from work. No problems with that since then and that has been about 5 years now.
Hi,
Try to be positive. I was through the ups and downs of uc and eventually developed psc. I had a liver transplant 11 years ago and I'm still going strong. It is not true about the five years only. Also, although psc can return that is not always the case. It is a hard surgery but what a difference it will make!! You need patience, take a day at a time, try to enjoy that day and keep as active as you can to keep your strength up. Do whatever the doctor tells you, hopefully it will be a doctor in a hospital that takes care of liver diseases and liver transplants. There you will get the best knowledgeable care. Although it will take patience you would be surprised of the great outcome. psc can sometimes be controlled and it does not always progress to the stage of needing a transplant. I am rooting for all of you. Eat healthy and stay positive.
Mary
I was diagnosed just over a year ago. I was terrified at first. I read everything I could get my eyes on. If I can say one thing it is this: don’t stress yourself out. The stress will affect you more than it’s worth. I found that while no one can tell me exactly my timeline and it is always hanging out there, I feel better when I can be positive.