Newly diagnosed after a long year

In march 2019, I had an episode of nausea/vomiting with abdominal pain. I woke up the next morning jaundiced. I went to my PCP who drew labs and got an abdominal US. My LFT’s and Bilirubin were elevated, and the US showed sludge in the gallbladder. They referred me to a surgeon who said I could have my gallbladder taken out if my symptoms persisted. My symptoms went away, I limited my fat and spicy foods, and I thought I was done with it. I’m an RN, and I was on a travel contract in California in Oct. 2019 when I started noticing a little yellowing of my eyes. A couple days later, I started having excruciating abdominal pain that sent me to the ER at Stanford. My LFT’s were elevated and my bilirubin was 9. I spent 3 days in the hospital, had an MRCP, ERCP, and extensive lab work done. They weren’t sure if it was PSC or just gallbladder issues. After a liver biopsy and another ERCP, the physicians decided it was just my gallbladder, and I had a cholecystectomy in Nov. 2019. My follow up labs showed decreasing LFT’s and normal bilirubin. Four months later, while on a new travel contract in Washington D.C., I had labs drawn for a check-up. My LFT’s were elevated in the 500-600’s, so I found a local hepatologist. An MRI showed strictures in bile ducts, and I had an ERCP to balloon the strictures. I was officially diagnosed with PSC. I was asymptomatic after the ERCP, and we moved back to Florida near family. I have a hepatologist that’s affiliated with the liver transplant program at UAB in Birmingham. A week ago, my jaundice, fatigue, and itching returned. Just got labs drawn and my bilirubin is 4, ALP 608, AST 188, ALT 304… I’m scheduled for another MRCP on October 19th. During my first appointment with the new liver doc, he told me my case appeared to be mild and I should not ever need a transplant, but I’m not so sure if I keep having these flare ups every few months. I’ve been reading on this site for the past year, so it’s nice to finally make and account and be part of this community!

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Hi, let me first say and I speak only from my experience in uk don’t be down you are lucky to be in USA where docs at least turn to drug therapy asap to offset the worst of PSC.
Remember hep and gastro specialists are desperate to be first to learn why PSC happens and how to prevent it all over the globe.
For knowledge and experience this site is brilliant so many are going through same as you .
Get yourself a hep who really understands,not an experimenter.
Seen pics of my lobes and one has no ducts left dissolved by bile forced back wards.Biggest lifestyle change was zero processed food still have butter but just pure cream whipped and no salt (BP) masses of veg,fish,meat and fruit .
Lastly but v important no stress,walk away from it and those who deliver it .
You can defeat PSC.
Had it over 15 yrs determined to prove my hep doc he was wrong 70 in few months he said I’d be a transplant by 65 lol :metal:.

Welcome, Brad.
That is an insidious thing about PSC. While people can go for many years being asymptomatic, we have to be ready at any time for when an ugly symptom can sneak in.

An ERCP can help reduce/eliminate a blocked bile duct, which is a cause of quite a few symptoms, but has its risks too, like pancreatitis.

Pendragon gave good advice. Get a good hep doctor. Not a GI> That is the difference between a specialist and a generalist. Since your hep doctor is at the UAB transplant center, even better. With you being in Florida, there is a good transplant center near Jacksonville, the Mayo Clinic. I think there is one or two more in Florida.

Hi Brad . I am so sorry about your diagnosis. My son’s symptoms are basically the same as yours, they keep coming back every few months. Are you taking any medications ? Did you try Vancomycin by mouth, it seems to be working for my 19 year old son ?
Best wishes

Brad - I have had Ulcerative Colitis for over 30 years, and was diagnosed with PSC in 2012. I have to admit the first 6 plus years of having PSC I did not have too many typical symptoms. Itching was about the extent of my reminders I had the disease. Unfortunately around the beginning of 2019 things started changing for the worse. My Liver numbers escalated, I was prescribed more meds than I can fit in my medicine cabinet, have extreme fatigue and now jaundice. I had ERCPs performed, stints to open the bile ducts in the liver inserted and removed, and last week was put on the list for a new liver with my MELD score now at 29.

I’m now in the process of classes, stress tests, and other testing to ensure I’m perfectly healthy other than the liver so the doctors can green light me on the recipient list.

The good part is my doctors say I can go another 20 plus years if the transplant is successful, without the itching, fatigue and jaundice :slight_smile:

As for a time frame or whether you will need a transplant, that’s kind of an individual thing. Some people are diagnosed and goes years without any issues (like me and six good years). Others I’ve talked to start declining upon diagnosis and it’s fairly rapid.

Biggest thing is keep the faith and know you have options.

Stephen (St. Louis)

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Steve, sorry you are facing this. I wish you much success and health on your journey.

Jeff - Just a quick update on my condition. Last Monday I had a Doctors appointment to ensure that I had proper care set up with my liver worsening. After the appointment I did bloodwork and started my day. I received a call from my physicians to call them right back as my MELD score had reached 42!

I was admitted to the hospital that day and on Wednesday I was notified that they had a liver for me (I was recipient number one in the Midwest region I’m registered in).

I went in to surgery at noon and had 12 hours or so on the operating table with my re-emerging very groggy Thursday after a successful transplant. I do want to stress this is the hardest thing I’ve ever gone through as now I’m almost reborn going through basic steps of relearning my body little by little, as well as getting used to the new medicines I will now take for life.

Today (Feb 1) I was moved out of ICU and into recovery. This disease really humbles a person as I’m moving at a good speed with good numbers to be able to start rehabilitation, but everything needs to be relearned.

I will keep everyone updated, but I feel blessed to have been given a second chance at life and will continue to do everything I’m asked for by my surgical team to become a success story, as I owe them and the donor that.

God Bless.

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Semperfidelis1964,
Congratulations on your recent liver transplant! My a MELD of 42 and I thought my 36 was high. You were very fortunate to get a liver so quickly. Things will just keep looking up from here on out for you. What a precious gift you received. I encourage you to stay in touch with us here. We always are in need of input from our successful transplant patients. Take care!

Mark
PSC 2011 / Liver Transplant 2015

Carpe Diem, Semper Fi.

Welcome to the club! Glad you got that call with. MELD of 42. That’s pretty darn high.

Try to go for a walk or two or three each day, but don’t overdo it. Focus on the long term while getting through the daily stuff.

Congratulations.
Jeff

Mark - Thanks for the message. Yes, I was very lucky to get a liver so quickly as I realize now how many symptoms of liver failure I was having yet just pushing through.

Very happy to hear you are a success story as well, congratulations on your transplant success and excited to hear from survivors of PSC such as yourself on “what comes next” in this unplanned trip into the unknown I’m on now as well.

Stephen

Jeff - Glad I joined the club, looking back now, the complications I was having and bad numbers rising so abruptly did not bode well for me seeing much of 2021!

Looking forward to representing survivors on this journey with you and other transplant survivors such as Mark. Advice, real expectations and experience sharing are certainly a way for those such as myself to pay it forward for those getting ready to get that call like we did.

Stephen

Cheers to you, Semperfidelis1964 - very happy for you!! Thank you for posting an update.

Thanks Gloria. It has been 3 weeks now since I left the hospital to rehab at home. I have been rapidly improving though my initial thoughts of being back to normal in a couple of months may not materialize. I’m now showering, eating like a horse and gaining back my weight, cooking, cleaning and grocery shopping on my own, as well as dressing my own surgical scars. All bloodwork has been positive as the new liver is certainly doing its job. Most of the bile has drained from my eyes and skin for the first time in ages, and my body and mind are starting to sync up again so I don’t feel like I’m in a fog. Pain has been minimal as I’ve yet to use any of the Oxy I was prescribed.

My biggest issues have been my wanting to do too much too early. I was a very physical man previous to the transplant, so not lifting more than 15 pounds is very tough. I also have a couple of spots on the surgical lines the Doctor had to open up to prevent infection, so have to pack them a couple times a day with saline dampened gauze (doesn’t hurt, just kind of awkward).

I’ve finally got down the meds I need to take daily and the times I need to take them. Tomorrow will be the first time I call in for refills on many of them. Still amazing thinking how many pills I take a day.

Stephen

Stephen,
Glad your liver is working so well. One of the best things I did to regain my strength was walk. I hope that is part of your rehab.

I have read that people who have had a transplant tend to gain a lot of weight. My doc thought that could be due to our reduced appetite pre-tx that we make up for it. So keep that in mind.

Your doc will adjust your meds based on your blood work. My Tacro started out at 14 a day; now it’s 2.

How is your sleep? Make sure you listen to your body and sleep when it tells you to. Naps were, and still are, my best friend.

Jeff

Thanks for the tips Jeff. Actually my appetite has been very good and I’ve gained back most of the weight I lost during the hospitalization. For some reason fish (cooked of course) is what I seem to crave most (sushi is forbidden). I’m now eating breakfast which was never really something I did prior to the transplant, to ensure the 19 pills I take each morning do not upset my stomach :slight_smile:

Sleep has been interesting. As my 20 year old son who has been here helping me is a “Gamer”, I think my body has switched to his schedule so I tend to start getting tired early morning then sleep until lunch. I am trying to slowly close that gap and make myself more “normal”.

I have been walking quite a bit and though I sometimes get a bit dizzy standing up too quick, I feel I’m getting stronger and stronger by the day.

My Tacrolimus started out at 4 tablets twice a day (8 total) and I’m already down to 4 and 3 three weeks later, so hoping my meds continue to decrease. All my liver numbers look totally normal now with my total Bilirubin mg/dL at 1.4, compared to 14.6 prior to the transplant.

Stephen

SO happy to hear you’re recuperating.

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Hi brad,

I am from India . My ulcerative colitis is since 2008. In 2019 I got jaundice and elevated liver enzymes. In 2020 doctor in the MRCp report have an impression about PSC. There after I was taking both ulcerative colitis medicines and steroids for PSC. I thought to take help of Ayurveda , practising yoga but all those did not worked well in the long run. In 2021 my parents decided to visit AIG hospital which is a good liver hospital in Hyderabad. In 2021 I was having jaundice and itching problem. There in Hyderabad hospital after many blood tests and MRCP they concluded I am suffering from PSC and within 3 months I should get liver transplant. As because the sum is very high so I started to raise funds through crowdfunding. In this march 2021 I had gone to Hyderabad and in the the same month I came in contact with a very good homeopathic doctor. Doctor said me that with in 6 to 7 months my health condition will be absolutely ok. So I want to share Hyderabad hospital report and recent report including MRCP. Since March I have not taken any allopathic medicines neither for ulcerative colitis nor steroids for PSC. I have taken very strictly only homeopathic medicines.
Kindly suggest me.





spchikudas,
Hello. I’m amazed at how quickly your numbers normalized. You certainly were in a pretty bad shape PSC-wise in March. Your Alk Phosphatase is still too high, but that’s to be expected with PSC. I hope you have continued good numbers in the days ahead. We’d be interested in hearing how things progress. Did you have an ERCP at the time your bilirubin was up to 16? If so that is one thing that would explain why your numbers normalized. Please keep getting labs at least every 6 months and stay in touch with your doctor.

We wish you continued good health and quality of life.

Mark
PSC 2011 / Liver Transplant 2015

2 posts were merged into an existing topic: My experiences, it helped me

I am sorry to hear that the remission is not complete. Wish you all the strength. Have you also talked to you doctor about complete Colostomy? Is that a valid option? I think you mentioned you had UC and this might be a flare up. If your Bilirubin is under control then Liver function become better with Yoga and Homopathy