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Primary Sclerosing Cholangitis (PSC) - Online Support Group

New diagnosis & member

Hi I’m new to the site. My name is Laurie & I’m from :canada:. I’ve had problems on & off for yrs with liver enzymes. About 2 yrs ago my specialist changed. The new Doc started running various tests that have taken almost 2 yrs to complete. About 4 yrs ago it was diagnosed as Fatty liver disease. Dr showed no concern though
Just mentioned moderating foods. Then I was told about 2 yrs back I had NASH & quite a bit of inflammation. They did all the proper tests but when trying to do the ERCP they were unable to get into my bile ducts with the camera at all. Last week I finally got the diagnosis of PSC. I have chronically bad nausea. Besides being on 2 acid reduction pills a day (tecta) they haven’t recommended or prescribed anything.
Idk what all my levels are because he’s so busy he doesn’t ever go over my blood work with me. Just to say it’s the same. Worse. A bit better. I’ve never heard of meld. Or alot of these terms. The medicines are usually not the same name as our neighbors in the :us:USA. I’ve never heard of these ‘cooling’ foods. I only see specialist every 6 months. But I did recently finally get a new family Dr. & he is just fantastic ( Thank God). Idk alot about this disease, what to expect or a general guideline of time. I have alot of other health & pain issues so this is just 1 on top of many. I am 46. I was on life support at 29 after a botched surgery. I had organs shut down & my heart stopped 3xs. I always thought some of my big health problems were due to this.
I’m Thankful to have this group & to learn from the masters. Lol. Wishing you all the best of luck & greetings from friendly Canada :canada::wink::sparkling_heart:

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Ms. Maintenance,
Sorry are having these aggravations. Feeling like %^#$$^ is bad enough, but when you have unresponsive docs, well, makes it worse.

The specialist you mentioned, just want to make sure that doc is a hepatologist-a liver specialist. They know more than your average GI doc.

The MELD is a crucial score, as it is a tool that can help determine where you are on a transplant list. There are 4 components of your blood work that are put into a calculator that spits out a number. Bilirubin, INR, Createnine and sodium are these components. The range is usually from 6 to 40. Six is healthy(ish), 40 is pretty bad. At least in the US, most transplant centers will list you only when your MELD hits 15, and will transplant in the upper 20s into the 30s.

The only good thing about psc, methinks, is that is usually progresses very slowly. Until it doesn’t. It will test your patience, flexibility and sense of humor.

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Fellow Canadian here…west coast. Ask all the questions that come to you. There are some very knowledgeable people here. Navigating the Canada system differs some from the USA.

E

PSC prognosis usually about 10 years until a liver transplant is needed. However, some people never need a liver transplant. Also, if you get a transplant, PSC can return. Even with a transplant people usually live 12-20 years after prognosis. It is a autoimmune disease. Since you had organ failure, it could trigger an autoimmune response such as PSC. Don’t let it get you down. Keep busy when you can & if your temperature goes over 101.5, get to the ER. It means you are going into sepsis. Sepsis can be deadly.

Hi Jeff. I very much appreciate all the information you provided. That explains alot I didn’t know. Yes my special is both a hepatologist & also gastroenterologist. He wears many hats. He seems nice enough but just doesn’t have the time of day to explain anything which, being the patient, is very frustrating.

Hi Eric. Yes. I’m starting to find that out. Lol. Happy Thanksgiving to everyone

Thanks so much for the reply & the information. I know this may sound strange…I’ve had alot of infections over the yrs…but I haven’t had a fever since I was a teenager. Idk why this is. But idk if I can count on that as a indicator :thinking:. I wonder if anyone else is like this?

You cannot bank on that 10 year estimate. I was diagnosed in 2011 and transplanted in 2015 with a MELD 36. Every patient is different. Also regarding recurrence. Make sure the surgeon does a Roux-en-Y procedure whereby they hook the bile ducts of the donors liver directly into your colon and abandon the common bile duct. They will reroute a bit of the colon so that it will be near your liver ducts. That greatly reduces recurrence, plus being on Prednisone for a full year. Awful stuff but necessary.

Mark

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Are you in BC?

I’d like to add that PSC usually progresses very slowly. But once it decides to go south, it could go down very fast. So be prepared.

As to chronic nausea, in my personal experience, some acid-reflux medication themselves could cause it. You may need to check on it

Hi Jeff. I’ve noticed us on the same Fb group. You are always very knowledgeable! So it’s great to learn & especially from a friendly face. Idk why I didn’t get notified I had responses here. I think this site might need to be dragged into 2018 :thinking::wink: Thanks for also explaining what a meld score is. Yes. He’s a hepatologist. Best of luck & take it easy

Thanks for the advice. Shout out to You on the West Coast. Grew up out there. My heart will always be there :wink::canada:

Thank you Merry. I appreciate all the knowledgeable advice here. It’s fantastic. Well I guess I’m not super stressed about it bcuz to be honest I have alot of other health issues, & have alot of pain & debilitating fatigue with it. This is just 1 more. What will be, will be . Best of luck :wink::canada:

Oh God Mark that all sounds quite awful & scary. Do some people choose not to transplant? I don’t seem to do very well at surgery and there’s always big complications so I’ve been avoiding procedures since the life support fiasco. It causes quite a bit of anxiety & PTSD. Well It’s never been brought up. I don’t think I’m anywhere close. But…knowledge is power. I’m a firm believer in that. Thanks so much for all the wisdom :wink:

I’m in London Ontario, near Toronto.
But I WISH I was in BC. LOL

I will do. Thanks so much. Idk if I could do without my stomach meds. I’m usually bent over double in pain when I try to stop or decrease dose. Not fun. Hopefully next time I see my Dr. He’ll have 2 minutes for me.

I’m so sorry for the delay. I wasn’t getting notification alerts.
I STILL have not seen My Dr/specialist. I have zero idea whatsoever how I am doing ,or where my disease is at.
However; I went for a stomach emptying test.

What is a stomach emptying test?

I just went for this. I was at the hospital from 11am till just after 4pm. Within a few minutes they came & served me a microwaved plain egg white, & 1 piece of toast with jam. A very small cup of water. There is radioactive dye on the food. You are fasting from 4 hrs prior. Every hour on the hour you go back & they take another picture of your stomach. The rate of absorption & digestion. The other 59 minutes per hr I would go to my car & read. But you are not allowed to eat or drink anything else. My results showed very poor motility so I am now required to take a med called domperidone 3 xs a day. My liver/endocrinologist is the only guy in the city that deals with this issue & there will be more testing for the root cause. I will try to close a copy of the results so you get the gist…hope this helps.

What does this test test?