Hi I’m Kim. I’m 54 and just spent the last 3 months having all kinds of test/procedures due to high liver enzymes during physical. Had an ERCP yesterday at UCLA. I was told I have PSC with moderate to severe damage both left and right sides of liver. They used a balloon in both right and left ducts and did scrapings in left ducts. I was also diagnosed with Celiac by a biopsy during first endoscopy. I’ve been gluten free for 6 weeks now. They also think I might have autoimmune hepatitis, but they haven’t done a liver biopsy yet. I’m overwhelmed, scared, and feel like I been given a death sentence. I’m not abe to see the hepatologist for 3 weeks. Not sure what to expect and how long before I need a liver transplant. Is 2 yrs, 5 yrs, 10 yrs??
Sorry to hear of the multitude of issues confronting you at once. Probably everyone on this forum has had similar feelings when first finding out about PSC. However, the disease is very unpredictable. I first found out I had the disease in 2005 and am still doing fine. I’ve had a few outbursts of itching and occasional discomfort but generally am just ignoring the disease. Others have had transplants much sooner. Generally, it’s live life day by day, stay active, keep informed. Having a good hepatologist is important.
Hi and welcome to our little family of people just like you living with PSC! I know the news of all this is very overwhelming right now. Everything you described fits in exactly like a typical PSC diagnosis. While not everyone has Celiac, PSC patients often have UC so they will probably keep a close eye on that possibility as well. You are on the right road in desiring to see a hepatologist. That is very key in the care of PSC patients. Let he or she take complete control of your care now, this is not the type of disease for a regular GI doctor.
PSC is not the end of the world. Plan on living till your 99 and you will do just fine The most helpful thing right now is to educate yourself all you can with the disease and it’s management, get under the care of a hepatologist associated with a hospital that does liver transplants, and make sure your family or close circle of friends knows all you can tell them about the disease. You will need all the love, care and support you can get in the days and years ahead. I encourage you to take your spouse or someone close with you to each and every appointment with your hepatologist who will take notes, help you remember the things you need to be asking the doctor and to ask the questions for you that you are afraid to ask. This is not the time to hide in a bottle, but this is the time to be proactive about this. I’ll send along a list of questions for new PSC patients to consider asking their doctor for you to think about. They will not all apply to you but they are a compilation of questions I’ve gleaned along the way. Along the road as you go in for different tests, you may find you have to educate the nurses and other hospital staff you may meet along the way that PSC is an autoimmune disease and is NOT because you drink alcohol. So many in the medical world just don’t have the understanding needed and you have to set them in their place at times.
We are here for you and willing to answer any questions you may have along the way. Just live life every day, plan for the future, your grandchildren, etc. Don’t let this disease put your mind into fears and doubts, but look up, hold your head high, and take one day at a time. I was diagnosed at 47 years of age and received my life saving transplant at age 51. It’s been 2-1/2 years post transplant and am doing fine, and so will you!
PSC 2011 / Liver Transplant 2015
Thank you both for your comments. It is just so overwhelming. I’m trying to think positive and just keep living my life. I’m curious how long you weren’t able to work when you had your liver transplant. I’m trying to figure out how to be financially ok if I have to have a liver transplant. Luckily I have good insurance, but I’m tring to make sure my wife is ok during this, since I’m the main bread winner.
Regarding recovery and returning to work. The exact time frame of course depends on the patient, how sick you were going into surgery, any complications during and after surgery, etc. I was fortunate enough to never have an infection episode or have to be hospitalized prior to transplant, while others had so many other complications.
In my case, I was in the hospital for 6 nights then released to a local Residence Inn we had reserved five minutes from the hospital for an additional 3-1/2 weeks. We lived 1-1/2 hours from the hospital which was too far immediately after transplant. While we were living in the hotel I was able to start back working through my VPN connection back to my office doing some light work I could do with my computer. After we returned home, my doctor allowed me to go in for 2 hours a day. Each week I would increase the amount of hours until after a couple of months I was back full time, although light duty. Immediately after transplant and for 3 months thereafter you are not allowed to lift anything greater than 5 pounds. They are dead serious about this to. A gallon of milk weighs 8 pounds so 5 pounds is not very much. After that, it was raised to 10 pounds for another 3 months and then gradually the restrictions were lifted. So keep that in mind.
You will feel so well, so great, so everything, that you will think you have super human abilities, but you have to restrain all that energy and follow the doctors orders. Daily exercise, just walking is very important to manage all the scar tissue. It’ll take some getting used to the immunosuppressant restrictions to avoid infection, etc., but overall you will get back to a routine soon enough.
I wish you well, and hopefully you have a long time before you have to think of transplant.
Thank you for the information Mark.
Holtz, I read that the average length of time from diagnosis to transplant was 12 years.
I made it to 4 years, two months.
I was out of work for 9 weeks, went back part time for the next 3, full time at 12 weeks.
One of the best things you can do is to prepare mentally for a roller coaster ride. PSC usually progresses slowly, but we have to be prepared for symptoms when they arise. And they will. So focus on the long term. Be aware that you will have bad days.
Keep your wife involved in this process as well, as it will take a toll on her, being your caregiver. And being a caregiver will not be easy.
Thank you Jeff for the information. I’m trying to focus on being positive and getting as much info as I can. I am keeping my wife involved and I have encouraged her to go to try and stay positive also. This site is really helping me understand some of the challenges I have in front of me. Glad to here you were able to survive this disease.
I’ve read different statistics of time from diognosis. Everyone is different. I’ve had this disease going on 25 years with little symptoms. I had ulcerated colitis at age 13 and I am now 57.
I get an MRCP every year. An ERCP frequently and liver profile blood work up every 3 months. And I see a very good hepatologist who heads up the transplant department at the hospital here.
Hang in there and try and live your life each day!!
Thank you for the encouragingredients words. I’m curious have your liver enzymes ever been elevated
Should have been encouraging words.
I’m jumping in with my comments following awfully good advice from the others. PSC is an exclusive club. After the shock of it all, the reality is that you can live years, right into old age. So, pick a number. Mine was (and is 89) years old. I was formally diagnosed with PSC in 2007, and was told I had End-stage IV cirrhosis, and yet I was leading an active lifestyle. I was put on meds and had lots of appointments. In 2009, I started developing symptoms and was placed on the transplant list. I think I had every procedure, test and imaging ever conceived! Finally, I received a living donor liver at Northwestern Memorial Hospital in Chicago. My recovery step-by-step was like Mark’s. From day of surgery until going home was just about a month. I too, stayed at the Marriott Residence Inn and commuted the short distance to the hospital for visits almost every working day. My advice is: don’t fear PSC. Respect it. Study about it and ask questions. Plan on living a long life. I just had my 6-year transplantiversary! Each person heals at their own rate. Receiving a portion of a living liver takes more time to heal than if you receive a cadaver liver. The reason is a cadaver liver comes “on-line” at full power immediately, whereas a graft has to grow to adult size. That can take 2 - 4 months. It’s amazing that it regrows in the donor in about 2 months. Feeling tired is perfectly normal. As the livers regenerate they will use 4500 to 6000 calories per day! I felt tired all the time until it reached full growth, then it was like suddenly having normal energy. My apologies for blabbering on. I’m not even sure I am answering your concerns. I’m glad you found us. You are among friends.
Thank you for the info. I picked 94 years before being diagnosed and I’m trying to stay positive and believe I will still live to 94