Jeff
Just clicked my Bilirubin a second time is not 5 it is 0.5 as again USA measure in gm/dl and were are gm/ml. So once I get to the mid teens or twenties I can look forward to “the itch”.
It is actually quite amazing how much the human body put up with when you consider how high above average all your readings were Jeff when you were sick. we must never forget how hard our body fights to remain working.
Mark
Just an update.
Had my medical appointment with the heptologist. He is a young specialist 35y to 40yr so hopefully I have him treating me through to his retirement then I will be 100 so happy days.Seriously he was very honest and straight up and down when giving me the facts. All of which has corroborated the discussions in this forum. As your last sentence stated PSC is unpredictable, that exactly what he said. He has started me on URSO even though i don’t have symptoms yet as he stated it was relatively harmless and although it wont stop the progression of the disease it will help the symptoms. Also he has me booked in for a ultrascan of the liver to determine the “rigidity” of the liver, he stated this will tell how much damage has been done already or act as a benchmark to monitor its progression. (sorry cant recall the name of the test). Anyway i am happy for your and Jeff’s advice to see a hepto and this guy was great. He is also the hepto for the states liver transplant unit. Our state only does 20 liver transplants a year (we only have 2mil people in our state) and he stated that with that small amount there only have a 18% death/non transplant rate which compared to some liver programs they run at the 30-50%. So i am pretty happy to live down under at the moment and although i learnt nothing new thanks to this forum i am happy to be in a great team.
Gaz,
Congratulations on finding a good hepatologist that’s as you say young enough to last till your at least 100 
Good on the URSO. That will give you some quality of life that will help the bile flow better. Regarding your upcoming test, I believe you are speaking of a Fibroscan. Here’s a link for more information and it does use ultrasound.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3594956/
“Essentially, the technology measures the velocity of the sound wave passing through the liver and then converts that measurement into a liver stiffness measurement; the entire process is often referred to as liver ultrasonographic elastography.”
Mark
The lovely lottery of life seems to have thrown anther curve ball. Just had my specialist appointment with my GI (Yes Mark for my previous UC issues just follow up as I took your advice after my first joining this site to get a hepatologist linked to our transplant unit ) and have my PSC Hepatologist appointment, next week but the GI sent me off for a heap of tests for Sjogren’s syndrome. Turns out the dry eyes and mouth I have had for some time which suddenly just got really bad is also linked to PSC and UC. Haven’t seen Sjogren mentioned in my reading on this site to date and was wondering if the community has any thoughts. I am just worried that this is an additional complication that may speed things up or worse still preclude me from a liver in the future. I get the result on Thursday but wouldn’t mind knowing anything so I can quiz my GP and then the hepatologist next week.
Hopefully its just par for the course and I am a big sook (Aussie for person who complains about minor things).
Hope every body had a great Xmas and New Years by the way.
Gaz, never heard of that. Sorry you have something else to deal with.
Gaz,
Take a look at the article at this link. I’m also going to paste where Sjogren’s Syndrome is mentioned in the article. That’s the only reference I’ve found so far and not related to PSC. Hope this helps some.
PBC
The diagnosis of PBC is based on a cholestatic serum enzyme pattern, serum antimitochondrial antibodies (AMA) and/or PBC-specific AMA-M2, and a compatible histology. Although elevated serum IgM is characteristic for patients with PBC, it is not regarded mandatory to establish the diagnosis[12,13]. PBC is frequently associated with other autoimmune disorders, like Sjögren’s syndrome, Hashimoto thyroiditis, and celiac disease.
Mark
Mark.
Once again a font of knowledge, thanks for that. Yeah will not stress about anything until I see the specialist and even then what can one do but play the cards one is dealt.
Thanks again
Cheers Jeff.
Will post the outcome next week
Gaz,
I just read all your posts and I have to say in spite of all you’ve been through, you have a great sense of humor! 
Love that about you. I’ve been through a lot in live as well and if it weren’t for humor I wouldn’t have made it. For Sure!
I just joined this group before Christmas when nobody was on the site. Pretty crappy time to be looking for info, but that’s when I began to start feeling some symptoms.
However, the good news is I am 57 and my diagnosis came at about age 30 and I’ve been living a full life, symptom free!! Well, perhaps s tinge here ir there in passing. Nothing serious.
As soon as I heard I had a liver disease I researched herbal remedies and read about “milk thistle.” I’ve taken 2-3 every day since finding out about the PSC. Just after a few years, upon seeing my liver specialist, I had an Alkaline phosphate # as high as 333. About a year later I was in my regular doctors office and she said, “I don’t know what you are doing, but keep it up…your liver #'s are great.” I had to stop and think because unlike a lot of you wonderful athletic guys I wasn’t doing anything like that or a special diet, but I did remember that my brother had been selling these juice/veggie capsules and asked my to buy them. I did! They claim to be organically grown and have 11 essential vitamins that you can’t get from eating fruits and vegetables. So, I’m not trying to sell anything here that’s why I haven’t mention the name, but only to say that my #'s changed drastically over 1 year and it’s been 25+ years since diagnosis. I now buy a cheaper version on Amazon, but take them faithfully.
I felt that perhaps my story might be helpful to those who may be newly diagnosed to know that there are people who can live symptom free for many, many years. My hepatic Dr. told me early on that you can live with PSC into your 80’s. I have to wonder knowing what I know now from the group and Google if perhaps he was referring to "post transplant?"
Anyway, best wishes to you with PSC and all the other issues. Keep the positive attitude.
I too have other issues, but they aren’t physical, all the same difficult to deal with coupled with PSC. It’s kinda hard to find duo support groups. 
Hang in there…
Jane
All but mainly Mark.
Just an update because I haven’t been on line a while. The sjrogens they thought I had wasn’t, so they gave me the better news they think it might be lupus. Another high five to the lottery of life. Once again I dodged a bullet as they got that wrong too.
Turns out my body just likes playing games and trying to trick me to get me inside the house, bookings doctors appointments, having bloods taken and reading stuff on-line.
So for the last 30 days since I have posted I have: built a grand stair case in my garden with heavy retaining blocks, shoveled heaps of sand, laid concrete paving, built a wooden table, had a great 50th Hoe down party (Sorry Mark did drink alcohol but a very small amount and will probably be my last time) started playing competitive basketball again (well as competitive as the local area team can be with old farts and young kids) adopted a 3 day old baby calf and just finished a 13 week period of acting up in my bosses position at work so pulling 50hr weeks at work. All while spending quality time with the missus and kids. (well my wife may not think being my trades assistant and helping me build stuff is fun, its time with me- so damit you must be having fun
So PSC, bring it on as I have too much to do to wait around for you to interfere.
Oh yeah in-between that had my fibroscan which came back as really good (just on the top end of a healthy liver reading).
So all in all life cant get much better.
Good luck to all that are out there and those new to these pages. I do still very much enjoy reading and learning from your sometimes very personal and inciteful comments.
Thanks all and will post again soon.
PS Anybody planning on Visiting Perth in Western Australia let me know your coming.
Gaz,
Well it does sound like you are doing great! I’ve got some projects here at my house in North Carolina if you give out of things to do, you can fly over on your private jet and fix me up
I do hope that’s not the only quality time you spend with your dear wife. You need to take her out for a lovely evening, just the two of you sometime! Spoil her some as she’s done so much for you during those down and sickly days! I’m sure you have or will. (Watch out for that alcohol. One drink is too much!!!)
Take care and do keep in touch.
Mark
Mark et al
Well its been nearly two years since I have posted. I have been keeping a watch and having the occasional read of the posts. Its great to see the stories and assistance this forum is to others.
12 months ago after having a dream run with my health I took a job in the remote and beautiful Kimberley region of WA.
Well today I post that maybe its my turn for the beast of PSC to start dealing his cards to me and to force me back into the conversation.
Just had a two day stay in hospital after some upper right qdrt pain. Thought it was another blockage of the bowel but after a negative CT result and me nearly walking out the ED thinking I was being a sook they gave me the result that my liver results were crazy.
So straight onto antibiotics and a few nights of R&R courtesy of the government.
Maybe my time of having a slow progressing PSC has ended.
Even though I am a bit confused since my Bilirubin is only just up and my CRP was normal.
Anyway since I am now living 3200km from my home and capital city I have a few weeks wait to fly back to the capital city and then see my hepto.
From there he will now doubt advise me.
So apologies for not being on line but it might me my time to share my journey to help others as they wait their journey.
Well Gaz, it does look like things may be progressing for you with the disease. That bilirubin is really high. Are you itching much? On your labs, what was your last INR reading? What about Serum Sodium and Serum Creatinine? Yes, I’d stay relatively near the transplant hospital or wherever you are seeing the hepatologist. When was the last time you had an MRCP done? It is going to show more detail about the bile ducts than the CT scan. Any talk about them doing an ERCP?
Take care and do let us know how you are getting along.
Mark
Mark
Had a MRCP 12 mths ago and was all good.
The Bilirubin may not be as high as yours because down here in Aus I think we use a different scale so I am thinking its 2.4 in your language.
For me the GGT and Alk Phos ALP were really high
My sodium was within normal and my creatinine was slightly over normal.
I havnt spoken to my Hepto until Monday, the ED doctors did.
I presume he will want to fly me down and then do a MRCP or an ERCP so will find out more then
Gaz,
What a relief on the bilirubin levels. 2.4 sounds more like it. I’d think you’d be crawling out of your skin you would be itching so bad if it was 24😀. Yes, the alk phos is rather high. Mine stayed high the entire time but never got above 406. My GGT only got at high as 847 but settled back down into the 400’s just before transplant.
I’d encourage you to get those labs done maybe every 3 months now just to keep a closer eye on your MELD score. Good to hear from you again. Do stay in touch with the group. We are here for my friend. Take care mate!
Mark
Mark
Was just catching up some reading and found this.
Its basically a patients guide in very simple language with what the government health service will do for all patients in the UK.
Very simple and a nice easy reference guide.
Just thought if you hadn’t seen it.
Gaz, welcome back. A 2.4 bilirubin is livable. When mine got to a 5, he wanted to do an ERCP. It seemed to be the only component of my blood work that interested him.
One thing I hated about psc is that a person can go for along time with minimal symptoms but then have quite a few symptoms in a row.
I hope you get good news from your doc.
Jeff
Gaz,
Thanks for sharing the link to PSC Guidelines in the UK. Very informative. I bookmarked it for future reference.
Mark
Hi Gary
I’ve been reading since you first posted, but haven’t replied before. My son was diagnosed 3 years ago, aged 13. We’re also in Perth! Lucky you to have a job up north - a little bit of paradise (though it would be heating up a bit at the moment).
You mentioned having a heptologist that you think is good. Is that at Charlie’s, or privately, that you see him. My son will transition from the children’s hospital services to adult services in the next year or so. I’m keen to be proactive about w
Dr Michael Wallace at The Liver Centre West Leederville. Next to St Johns in Subi. He is attached to the transplant unit but thats his and Prof Luc who will do the surgery their private practice.
PM if you would like to chat and I will share phone number
