I'm 29 years old and was diagnosed with UC 10+ years ago. This February I had a flare and during lab work my doctor discovered elevated LFTs. About a month later, after more blood tests, and ultrasound, a biopsy and a MRCP my doctor told me I have PSC. LFTs were elevated (AST=79, ALT=152, ALK P'TASE= 43), MRCP showed no abnormalities, and he said according to biopsy I was stage 3. He hooked me up with a liver doctor from Mayo and he confirmed with 95% certainty that I have PSC. Dr from Mayo and I decided to not try Urso for a while so we could retest in a few months. So for 2 1/2 months I have been working on accepting this diagnosis (not very well I may add). Fast-forward to yesterday...
I had blood work done on Tuesday so I called yesterday for results. The nurse obviously did not know my diagnosis and told me my LFTs were all normal, like it was no big deal. I said, woah, woah, woah. I was also tested for Vit A and D. D was normal range and A was low (24 when should be 30-80ish).
So I called my dr at Mayo. He was asking if I was taking any meds/supplements. I have not taken anything besides my colazal and multivit. He also said he was looking at my biopsy from March and my liver looks like maybe stage 1, but maybe even 0. WHAT?! I am happy of course, but also I little angry. He is still sticking by the initial diagnosis of PSC, but I feel so confused. I had just started to be at peace with things and this is throwing me for a loop.
It is difficult because this disease is so rare, I do not know who to turn to. If I should even believe my doctors at this point?? I am trying to just be grateful for the good news, even if it is PSC I am doing better than I thought I was.
This has been a challenging few months. I have a beautiful little girl who was just 9 months old at the time of diagnosis. I just want clear answers, but I am afraid that may not be in the cards. I guess I am just looking for feedback or if anyone else has gone through something similar with unclear diagnosis? Lab work that played tricks on you? Should I try to find new doctors? ;)
wow Kate I was just diagnosed 3 weeks ago w/ PSC, I do have a very good doctor who has good reviews Dr. Dale Holly in Atlanta. I just had my biopsy so I will meet up with him next week or the following to get my results & make my path forward. I don't want to advise you on getting new doctors or not I'm not that experienced w/ PSC I'm just starting my journey. Now I can tell you that this website is very informative, & you can make good contacts . I would like to suggest you talk w/ Mona on this board she has a lot of information, she's not a doctor , she has PSC like us but she can give you some good pointers to try. Keep in mind what works for 1 may not work for others. It's all trial and error through baby steps.
I was also diagnosed with psc 3 months ago.I have been to 3 different hospitals in the Boston area. My ercp tests show psc. i dont know what stage i am. I have had all tests from ultrsounds to liver biopsies. I dont know if i ave cancer because they feel this disease is hiding the cancer in the bile ducts. This has changed my life so much in 3 months. Are you very itchy. I feel like i want to crawl out of my skin. I am on ursidial. It is suggested by my drs i go to mayo to see if qualify for a new liver. How do you just pick up and leave home for months. I am so fatiqued. I am going to the Mass General on Weds. for an evaluation. Has anybody been through this before. I am 62 yrs young, and felt pretty good before. Now the anxiety of this diseas is just wearing me down. I was tiold i have 3 months to 1 yt to live without a new liver, and that was 3 months ago.
OMG Barbie , I am so so sorry to hear that. I am itchy at times , mostly when I am idle & start thinking about it, Once I start itching in one spot then I jump to other parts of my body. Some of my bad days are very low energy but I don't have that every day. Actually I have energy to do things , even go work out but have not trained since my diagnosis 3 weeks ago. I don't know what stage I am in , I guess I will find that out when I go to my GI doctor to go over my biopsy results. You are so right about the anxiety & stress this disease cause. Seem like I'm always thinking about my health, doubting myself. My brother said after I had my ERCP/Endoscopy when my doctor came to see me the 1st thing I asked him "all I want to know is do I have cancer" he said "no I don't have cancer". I forgot I even asked that question I think because I was so high on the drugs from surgery.
Hang in there Barbie, also what's good for the itching I found out on this site moisterized you body w/ coconut oil & olive oil mix.. Also when feel the urged to itch I take my flat hand rub over the area not do heavy scratching.
OMG Barbie , I am so so sorry to hear that. I am itchy at times , mostly when I am idle & start thinking about it, Once I start itching in one spot then I jump to other parts of my body. Some of my bad days are very low energy but I don't have that every day. Actually I have energy to do things , even go work out but have not trained since my diagnosis 3 weeks ago. I don't know what stage I am in , I guess I will find that out when I go to my GI doctor to go over my biopsy results. You are so right about the anxiety & stress this disease cause. Seem like I'm always thinking about my health, doubting myself. My brother said after I had my ERCP/Endoscopy when my doctor came to see me the 1st thing I asked him "all I want to know is do I have cancer" he said "no I don't have cancer". I forgot I even asked that question I think because I was so high on the drugs from surgery.
Hang in there Barbie, also what's good for the itching I found out on this site moisterized you body w/ coconut oil & olive oil mix.. Also when feel the urged to itch I take my flat hand rub over the area not do heavy scratching.
I haven't had any itching yet. I would say I am incredibly tired/ low energy due to my anxiety being through the roof. I do not do well with not knowing/getting different answers from different doctors. For a person with high anxiety to begin with, this disease is an especially cruel diagnosis. Definitely a test of faith...
I was told by a gastroenterologist at a teaching hospital that did liver transplants that he, like most doctors, learn about PSC from a textbook and are told it is unlikely they will ever see a patient with the disease in their lifetime. I was the first one he had seen, and he kept coming into my room to ask me questions about the disease. You may know more about it than your doctor.
My advice is this: find a hepatologist at a teaching/transplantion hospital who has experience with treating PSC. You can learn this by asking at the Hepatology department for the doctors who have treated PSC. You do not want a beginner. Secondly, it is preferable to be at a hospital that does cadaver and live transplantation. You may need a transplant some time in the future. The methodology for allocating livers is called the Model for End-stage Liver Disease (MELD). Organ allocation is controlled by the United Network for Organ Sharing (UNOS). PSC is a disease that rarely scores on MELD. It ranges from 0 to 40 (death eminent). I was an 11, even though I had End-stage IV liver cirrhosis, was skin and bones and sick all the time. A score of 22 was needed in my region to get a transplant. My number was 16 and then it dropped to 11. They do not make exceptions to the MELD rule.
I had been waiting for almost three years on the transplant list, thinking i would get a cadaver liver. A transplant surgeon at the University of Wisconsin told me my only hope was to find a live donor. I received a live donor transplant on February 8, 2012, and am in great health today. Despite my low MELD number, I nor my doctor felt I had long to live.
Search and find an experienced hepatologist at a hospital that does live donor transplants. That will greatly increase the quality of care you get and your chances for a transplant should that time come. I hope and pray your PSC goes into remission and that you lead a long, disease free life.
Thank you so much Paul. This is exactly what I needed to here. Thanks for all the information and I’m glad you are doing well. Question for you: how did you find your donor? This part scares me…
I had a good Gastro. He knew PSC was over his head and referred me to Froedtert Memorial/Wisconsin College of Medicine in Milwaukee. I got great care there. Unfortunately, they only did cadaver transplantation. I met a man with PSC who was in the live donor program at Northwestern Memorial Hospital in Chicago. I was accepted into their transplantation program in November 2011 and received my transplant on February 8, 2012. I am in great health today.
As rare as PSC is, my wife, who is a teacher was asked by a friend at lunch about my disease and how I was doing. This was about three years ago. When another teacher heard her mention PSC, she said she thought that was the disease her brother-in-law had. The next day she confirmed it. Her brother-in-law lived 20 minutes from us. We talked on the phone. After that we met and had lunch. He started going to my transplant support group. He was the first PSC’er I knew. We were in about the same physical condition, getting worse by the week. His daughter was tested and qualified as his donor, but she had to lose weight, you know, the BMI thing. What makes our meeting so unusual is that he went to high school with me. We lived our childhoods less than a mile apart. He went to a different elementary school and church than I did. He is a year younger. Our high school was very large, 3,200 students, so we did not know one another. He and his wife and family helped by encouragement in my transfer to the live donor program at Northwestern. He got his transplant five months before I did. We are best friends, now. It helps so much to have someone with the same disease that you can confide in. It is also important for caregivers (in this case, our wives) to have someone to talk to. I firmly believe tha caregivers have a harder job than the patient. The physical demands, spending endless hours in the hospital when I had liver failure eight times, dealing with the family and the fears you naturally have only begins to describe what they go through.
I think you will successfully find a good hepatologist if you contact a transplant hospital that does live donor transplants. Those institutions have only the best doctors and surgeons, often recruiting them from other transplantation programs. Of, course you will always have the problem of personality matches, but that is just part of being human. You can go the cadaver route, but chances are high you will need a live donor if you end up needing a transplant. Good luck and Godspeed in your search.