Hi Mark. The doctors office called with lab results. They seemed very encouraged but MELD score doesn’t seem to reflect that. All tests are in normal range! Except bilirubin is still high but going down from her hospitalization. It is 9. She has been out of hospital 10 to 11 days. She feels good. Eating and drinking well and better each day…I’m happy about all of this but uptight til I see Hepa/transplant team next week. Is this good news as she states? Liver enzymes normal too. All within normal range.
Mollie
Hi Mollie,
Is the bilirubin 9 or the MELD score 9? If the MELD score is 9, that is good. Do they have her on Ursodiol? If so, that does bring the liver enzymes down and brings more quality of life. If bili is 9 though, that is still rather concerning. I’m sure the hepatologist will be able to give more insight when you see him next week. If she’s feeling good, eating and drinking just enjoy that with her! Take it one day at a time. PSC is usually a long-term illness especially when someone gets it young, which is good! Take care. Look forward to hearing more after you see the hepatologist.
Mark
Bilirubin is nine.
Mollie,
Well I’m sure the hepatologist will know how best to advise. My gut feeling though tells me she’s got to be having a blockage that would cause that high a bilirubin. Is she scratching or complaining of itching?
What about her MELD. Have you run those numbers?
https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
Mark
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She’s always scratching. I don’t want to run MELD anymore . I have to keep positive or I’m going to fall apart. The last screw showed 13 in MELD.
I certainly understand Mollie and I don’t want to pressure you in any way either. You might ask her doctor about a medication called Rifampin. I took 300 mg twice a day for the 4 years from diagnosis to transplant. It basically eliminated my itching. It doesn’t work for everyone but it made a world of difference to my quality of life.
Mark
Sorry. My phone types it’s own words at times. The last labs when put in MELD came to 14 as you know. This time 13 not much significant Change I felt so am confused but waiting. Thanks Mark…
Mollie
Thank you Mark. And you’re not pressuring me at all. I just look forward to hearing from you about any positive outlook because this is the scariest thing and no one understands it. People keep asking me if she’s better yet and I’m like how do I answer that?
It’s so very hard to make people understand this disease. I’m writing down all the information to ask the doctor on the 27th I’m nervously looking forward to it.
Mollie
Mollie,
You dear daughter is just starting out on this journey with PSC. It may be a long road ahead but not every day is a bad day. As they do more ERCP’s and other interventions they will hopefully be able to get her bilirubin down and other LFT’s down into a more “normal for PSC” range where she can have some good quality of life years. I firmly believe that URSODIOL is a medication, that although it doesn’t cure PSC, it does bring the quality of life that we as patients so desperately need. Through all these days, just let her live life, enjoy life and be the young lady you’ve always dreamed for her to be. Pour all your thoughts and hope into her and as you love her, she will see the stability of your life and heart which will bring a greater peace to her own heart. Amidst her handicap, she knows how to give a lot of love. Yes, there may be days of difficulty, burdens and a wondering of what tomorrow will hold, but you must have HOPE! Hope that she will get through this journey, hope that one day if she needs a transplant that the perfect match and donor will be found. You must always have hope amidst the trials of life. When I was diagnosed it was one of the greatest trials of my family’s life. Just three years prior to my diagnosis my dear wife had been diagnosed with breast cancer and had to undergo several surgeries. Oh, we went through a lot during those years of her sickness and then mine, but we had the Lord, we had each other and through it all we had a hope and trust that it was going to be ok as long as we trusted and believed that our Heavenly Father does all things well. Be encouraged tonight in this and just take one day at a time. Worrying constantly will not help you and your daughter will definitely pick up on it. She needs the strength and stability in her mother. I know you will do that for her and one day you will all look back on these years and see the goodness of God in it all. Take care and God bless you and your family.
Mark
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Thank you so much. All so true.
Mollie
Mollie also don’t let internet scare you. There is a lot of information that I got when I was first diagnosed from the Internet and it scared and panicked me so much. Be sure whatever website you were on that it is a good source of information and current. They are making strides in PSC research. There is a PSC organization that I just can’t remember the name of it but someone else here will be able to provide the name and hopefully will post it. I think it’s PSC Partners and you can go on there to get the latest research. There is also good research posted on this website at times. Your daughter is lovely and I pray that her outcome is good and that the PSC progresses very slowly or goes to sleep like mine has for the last few years. It’s not progressing but it’s of course not gone away. Take care and keep us updated.
Thank you so much! I’m trying to stay so positive though it’s very difficult. So many people in the professional field are scaring me at times. And my daughter cannot tell me at times how she feels so I having to ask her time and time again and be vigilant to watch her.
Did you read that post from someone talking about Visceal manipulation? This sounds so interesting! Your thoughts?
Mollie
Mollie,
The web site that Buttercup mentioned is called PSC Partners Seeking A Cure. The web address is http://www.pscpartners.org/.
Mark
Hi Mark,
Alana looks some better tonight. I keep looking and see her eyes are brighter and whiter…so I hope this keeps up…Tell me what you think of that vasciel manipulation? Not sure spelling…I read a patient has this and says it has kept him stable for years…
Mollie
Mollie,
Glad Alana looks better this evening. If her eyes are whiter perhaps her high bilirubin levels are falling again. I pray so.
Regarding Visceral Manipulation, I did a little research on it and in my humble opinion, I would not pursue such a course. You can certainly discuss it with a hepatologist, but I would not personally recommend it. This appears to have been developed by an Osteopath doctor and the description of how it’s done reminds me somewhat of a chiropractor. I just think it’s not worth risking Alana’s health with this, not now this early in the PSC.
I hope your day goes well tomorrow. Just take it one day at a time, smile and enjoy that precious daughter who I know brings you all so much joy. Happiness can be contagious 
Mark
My thoughts too on the manipulation. Never heard of such a thing. By the way, her urine is dark orange and sometimes a golden yellow. Still pretty dark. This is all bilirubin effects I’m sure.
Mollie
Yes, sure is part of the high bilirubin. Will even effect the appearance of the stools. I wish that appointment was today, but it’s soon so you are good! Hope you all have a wonderful day!
Mark
Hi Mark,
Alana has had a good day. Less scratching and more engaged in the family. She looks some better as far as yellow cast to her face …
I am new at maneuvering the PSC site but had been reading about edmun? Whatever happened? Did he get help? I felt so bad for him… then wondered if these were even recent posts, don’t think so… just thought I’d ask. Having a special day at church tomorrow. Family and Friends Day. Dinner and festivities…
God bless you,
Mollie
Hi Mollie,
So glad Alan’s day has gone well. Encouraging news about her less itching and jaundiced look improving. I’m hoping that the bilirubin will continue to drop even more. I’m sorry but edmun doesn’t ring a bell. Are you speaking about the user endrun that you wrote in an earlier post today? He’s been a member of this forum for over 5 years. I do hope he’s doing ok. Hopefully we’ll here something soon.
Glad to hear that you all will have a special day and church tomorrow with your family and friends. I got my routine labs back yesterday and my immune suppression levels are lower than they need to be and my bilirubin has crept up a bit at .9. Hopefully it’s nothing and they will just make a medication adjustment. They were in the process of weaning me off one of my transplant meds and just hoping to keep me on Prograf as the main drug for suppression. Will probably here from the doctor Monday. Even after transplant there are things to be so careful with the rest of your life, but the Lord is always faithful. Give Alana my greetings.
Mark
I was reading about a man who was very sick and he felt they had given up on him? Yes . It was the man you mentioned. Not sure if that as what I was reading on here.
I’m sorry you aren’t at your best Mark as you usually are, but I’m confident you will be. You are so encouraging to everyone and we are thankful.
Alana had a decent day. Her color slightly improved. Urine is better too. I’m expecting that on Wednesday the hepatologist Dr Post from University in Cleveland will say her labs look better. I certainly pray so. I’m doing all I can. She is on urso twice a day and a couple things for the itching. It seems less too. Feeding her the healthy diet low fat and lots of healthy veggies, fruit, etc…
Take care. Our prayers for all on here and especially you.
Mollie