I have had PSC stage 2 for 5 yrs now. Labs have always been fairly stable, ERCP with dilation (no stents needed) every 18 mo, only 2 true diagnosed bouts of cholangitis, but frequent itching. I take URSO only. Tried all the antihistamines, the cholestrymine (yuck!!), rifampin, naloxone, all the tricks but nothing really helps. I deal with the itching fairly well. I had my last ERCP in march but never got the relief I usually get from itching and fatigue this time but thought oh well just another step in the disease. I work full time and have 3 kids so I try not to dwell on the what ifs. Anyway… I had to take my daughter for a sport physical with our GP and he noticed the itching and suggested labs. I was hesitant but had him just run a CMP. He called that night with my results and wanted my hepatologist notified. When I talked to the nurse she called backand said dr wants me to transfer care to the transplant team! I am worried. I didn’t realize I had progressed to that point yet. My hepatologist ordered more labs, a 3 stage CT,and another ERCP. My Alk phos was 374, sgot 180, sgpt 120, globulin 4, t bili 1.9. This is a jump from my usual labs but is this a transplant jump? Just curious what others think. Maybe my hepatologist see the changes from march and is being cautious?
No these are not transplant numbers yet but it may require someone more skilled, experienced, trained in pre transplant issues. You may still go many years yet. I was recently hospitalized with bili at 7 and alk phos 700 for ercp etc. So your numbers can really fluctuate as your liver worsens. At the end of my first round PSC prior to transplant I was on 3 meds at once - rifampin, naloxone and cholestyramine. the combo worked. If you trust your hepatologist than he/she is telling you they are starting to get uncomfortable treating you and want the opinions and care of the transplant team. You may actually be able to keep your hepatologist and do consults with transplant like every 3 months. That is kind of what I did until was getting close. Good luck. Deb
Thank you! Sorry ur numbers suck but it does ease my mind. I’m actually relieved to see the transplant team just cuz I’m not thrilled about my regular liver guy. Have asked to chg but get the run around
Its a bummer and frustrating when you get the runaround. You don't feel others have your best intentions/health at heart. I'd say take charge and be firm about what you want. Is the hepatologists practice have anyone else. Maybe another practice - sometimes getting into transplant team is tough. In my case it took the necessity for liver surgery more complicated than general surgeon wanted to handle so he referred me. I actually transferred out of transplant team's care about 3 years after first liver tx. I felt they were giving me runaround and were not the best at treating return of PSC, so went to doctor whose name I always heard floating around. Good move for me, tx team didn't like of course but I truthfully told their care of my problem wasn't what I expected. AND went I got to new hepatologist/gi doc I questioned him about his comfort level and ability to handle my problem and instead of wasting any of our time speak up now. Learn to be firm and straight forward - after all 'It's your health!"
Oh and one more thing to remember tiff - it is a fine balancing act in combination w/ your liver score (MELD in US) for decision to transplant. Most teams do not see the need to transplant any earlier than necessary which means we all get pretty sick. Not good news but reality. Take care and good luck! deb
They probably just want to keep a close eye on you. It is all about the MELD score i wouldn't worry until you get this number. My number is always low, even when i am sick and in the hospital. Been on the transplant list 3 1/2 years now. They want you to keep your liver as long as possible.
We have a current bili around 6/7 and at our last appointment our Hep doc said he wanted to have my fiance evaulated for the transplant list, again. We did it maybe 4 years ago and my fiance's MELD score was too low. You want to stay on top of your condition. We do monthly labs and are seen your bandings, xrays, ERCP's, etc... This year our Gastro doc said he wanted us to see a Hep doc as he felt there was nothing more he could do with us. My fiance had been with him since the age of 15. If a doc is telling you they want you to go elsewhere you should listen. Also, listen to Deb - take control of your health. If you are not feeling a good vibe with the doc, look for another. Your instinct won't steer you wrong, that's what I believe at least. We had a general doc that I thought was useless, I did my homework and found another, we couldn't be happier with him. You are the CEO of your life! Try not to stress too much, your condition may progress to a new strage quickly, however it may stay in the next stage for many years. Take control of your diet and stay on top of your condition. Feel free to ask questions. Hope I was able to help.
The ITCHING...makes you crazy right!! If it makes you feel any better my last Bloodwork #'s were Alk Phos 947,
Ast 165, Alt 164 & my billies are 1.5 & .8 - I just was hospitalized for a bout of Cholangitis and my Bilis were 4.8 & 3.0 but now they've come down after IV antibiotics (Flagyl & ristofin?) My transplant team told me to watch for the Bili's to get above 3 and that's when things get fun! My question to YOU is how do you keep up with everything? Fatigue, itching - the only thing that mildly helps is Benadryl which makes you MORE TIRED! How are we suppose to work when we're half doped up on meds, not to mention it's really affecting my memory/moods? Does anyone else have that issue?
All in all it's a good thing to keep your transplant team updated on you, and they also get to know you and your case better.
Just my thoughts....
Lousy Liver Lisa
May not help you but FWIW I had terrible itching when on URSO with or without Cholestyramine (or Colestipol). I went off URSO (since all it did for me is lower the test numbers without affecting the underlying PSC) which helped with the itching a bit. When I went back on Cholestyramine (without the URSO) it reduced the itching by probably 90% for me (plus it helps lower cholesterol).
Best wishes with whatever works for you...
Getting to transplant isn't just about the numbers or the MELD number. There are other factors that can be potentially brought in. But mostly PSC is a real squirrely disease and you can go along for a long time with absolutely nothing happening, close to normal labs, working fulltime, having a real life, and one day you crash. In a short period of time, seriously, my hep told me it can happen overnight, you can move up to within shooting distance on your MELD of a transplant. Lack of donors is a problem, though, and will remain so. And type O blood may have a lot of donors lining up with type O - but sometimes those livers go to A and B as well as O types. Yep. PSC has been very quiet for me for long enough for me to start gathering a life again - knocked out the fatigue and I'm working part-time now. It's nice and I'm going to enjoy it for as long as possible. At my age, 66, I may not ever be transplanted. Which would be just fine with me.
I hope you get that itching under control. Like Deb (greatdane) said, don't let a doctor waste your precious time and you advocate and push for yourself and the best care. Hang in there.
We (my husband, actually) were listed for 5 years before his condition got bad enough to warrant a transplant. It is beneficial to get listed and be under the watchful eye of the “liver guys” so that, when the time comes, you are well informed and ready to roll.
A word of advice. My husband and I had to battle mightily and find a hospital where the director of transplants was willing to go to bat for us and request extra MELD points – as a typical PSC patient it is very difficult to get the MELD score you need for a transplant based on the basic parameters – my husband’s “numbers” did not – in any way – reflect how sick he was. Without the “exception points” he was granted he would still be waiting.
Danabee - Some wise points you brought up. Also, know just what you mean - everything rolling along great, having a life, working, etc, but can crash at any time. My crashes although increasingly more frequent have been relatively brief (so far) but am always feeling like ticking bomb for the big one...
Korr - Been reading about 'exception points' and one hopes these are implemented universally as often the numbers don't entirely reflect how sick one actually is. Glad you and your husband won the battle!
Beyond thankful for this site that allows me to gather information from everyone. Thank you for sharing everyone!
This is Deb's sister - I don't want to be a bummer - Deb was diagnosed with choliangiocarcinoma on august 20th and she is in hospice now. From my side of this whole process of 10+ years I was always soooo amazed at my sister - her knowledge of drugs, her reports, her scores, the correct treatment options, writing down what worked for her and what was a disaster. YOU have to be an advocate for herself - you have to find people that will work with you, not mess around. You have to suggest ideas for your own care, and you have to tell MDs, etc, when that has been tried, it's not working and this is what works for my body. You also have to have a strong support system who also is understanding of all of this because there were days for Deb when she couldn't lift her head off the pillow and she needed me to tell the MDs when certain drugs/treatments/ etc were or were not going to work. Deb would say to live life, experience everything beautiful in your life, smile and find happiness in today, live in the moment and God bless you. ----Deb's sister
To Deb's sister: Thank you so much for writing and letting us know about Deb. I'm so very sorry things have taken such a bad turn. Deb is a remarkable inspiration to us on this site. As you said, she is very, very well informed and knowledgeable about her disease, meds, treatments, the medical system and being one's own advocate - which is vital! I truly admire Deb's wisdom, courage and joie de vivre and am sending her my best thoughts, and to you as well for being a wonderfully supportive sister.
I am out the other end of the transplant process… I had a live donor, my son! Whew… We are both OK. Having a live donor kicked things into gear faster.
The thing that helped me most with the itching was baths with magnesium salts… They draw out the impurities from your skin. A good loofa scrub helped as well. I think the itching is more from toxins coming out your pores (like tweaking) - do you notice it drives you crazy when you sweat?
At times my Alk Phosphor where over 1,000 and my bills were way up. I had friends who would rate my jaundice from 1 to 10 so I knew if it would be a shock to others when I went out… The irony was that I actually did not feel all that bad? It is an insidious disease, so glad to hear they are monitoring you well. The faster you can get on the transplant team radar, the better! Make a point to get to know them and they know your name. Good luck!
Has there been any update on Deb? My prayers are for Deb and her family.
it seems as though your hep feels as though your psc requires a better treatment plan. this is a good thing! my liver team has been amazing throughout my bout with psc. they really involve themselves in every aspect of your condition. they manage your medicines and will do everything to ensure your as healthy as possible. stay positive and have faith. god bless!
It is best to get in with a Transplant Team now. I have had a transplant and I had my gall bladder out in 2000 and the transplant team did that, I didn't actually need a transplant until 2007. Try not to worry. Because they had sent you to a tream, may not mean you will get on the list yet, or ever, but it is better to become acquainted with a team and have them checking on your health. I was diagnoised with PSC since about 1994 and didn't have a need for the transplant until I was put on a list in '06 and received one in '07. I have just found this support group-I am glad you have already found this site and have people to ask questions to and talk to about the PSC. Cautious is a good thing to be.
Hi, I was a PSCer and underwent transplant. Don't worry mate, take the deal, the transplant will make you OK.
First of all, always better to be cautious. Your numbers are actually not that bad at all. So many "other" things can tweak LFT's. Go to the apt, learn all you can. I suspect you will be smarter and relieved.