Mark,
Alana is taking hydroxyzine every six hours for itching. Do you think this is a good drug? I don’t see much help with it.
Mollie
Mollie,
Hydroxyzine is in the histamine antagonist family of drugs. It is often prescribed for itching but then you have the drowsiness side effects at times and watch out for fast or uneven heart rhythm. She wouldn’t necessarily have this but it is one of the more severe side effects. I would not encourage Zoloft (an anti-depressant) if they mention that. I really would hesitate to use an anti-depressant for itching. There are so many other side effects. I tried it for a little while but the stuff really messed with my thinking. Hydroxyzine will probably be ok if you see that it’s helping. As I may have mentioned previously, the only thing that helped me was Rifampin 300 mg, twice a day. It is a drug originally developed to treat tuberculosis but it all but got rid of my terrible itching and I took it for 4 years before transplant. Another medication some PSC patients have found effective is If her bilirubin is still over 5 or 6 I would ask for another ERCP. She’s bound to have a blockage in there that they hopefully could balloon dilate and open the duct up so it will drain. Again, please encourage the doctors to NOT use stents unless it is absolutely necessary. It’s just inviting trouble for infection which Alana doesn’t need. Here’s an article you may find interesting along this subject line. Send my best to Alana. I pray her week goes well.
Mark
Good Morning Mollie,
I hope your visit with Alana’s hepatologist goes well tomorrow.
Know that you and your family are in my prayers.
Shalom,
p.s. Thank you for sharing Alana’s photo with us. 
Thank you for all encouragement and prayers for Alana. I will update you after her appointment tomorrow. I’m hopeful but realistic too. I see the yellow in her eyes and skin. Kind of down today but she on the other hand is doing fine and happy.
Mollie
Will be praying for Alana’s appointment tomorrow Mollie. It would be good to make a list of the questions you want to ask in the order of importance. If my wife wasn’t taking notes and helping me remember the questions that needed to be asked I am sure I would have forgotten many of the important ones. Thanks for being there for your dear daughter.
Mark
Thank you Mark. I’ve been writing them down and adding to them. I’m so nervous but anxious to hear where she is. Thank you for your prayers. I believe God is with us. I know He alone has the answers. Thank you again. I will keep you posted.
Mollie
Hi Mark,
Jeff and I just got back from the hepatologist/transplant doc appointment with Alana. He was very positive about her past labs but of course was drawing new ones. He said her bilirubin needs to show decrease…Pray it does. I have to have them in the morning. It was six by the time we were done so lab closed. Will have labs ahead of next appointment… I used your list to ask 32 plus questions! And my own too…he said that he felt she was further advanced in this disease… around the middle…was his concern he told me that she’s not in the beginning stages of this disease…he was positive about her health. No cancer, no cirrhosis, no swelling, no muscle issues, no pain, no symptoms but bilirubin. He said transplant within year or two is his thinking…
Will know more if bilirubin goes down any it’s going in the right direction. Thanks for praying. I feel Gods grace and a calm I didn’t have before. I know it’s going to be a long road. I’ll keep you posted.
Mollie
He’s not someone who recommends live donors he said…
Mollie,
These are all very positive things you have mentioned tonight. With her high bilirubin I didn’t think she was early stages either. Did he mentioned about getting an ERCP soon? Please remember to kindly ask him to avoid stents like the plague unless absolutely needed. Less possibility of infection setting in which she doesn’t need!
I’m not sure if I shared this poem with you yet or not, but my dear youngest daughter wrote it in January, 2015 6 months before my transplant. I hope it will be an encouragement and blessing to you and your family at this time.
Oh to yield as Jesus yielded
To His Father’s will,
In each trial and temptation
Simply to be still.
Simply yielding in obedience
To the Father’s rod,
Living by the Scripture’s leading,
Trusting in our God.
Meek and lowly was our Saviour,
And we too must know
Such a life of yielding, trusting,
Both in joy and woe.
May you know that yielding and trusting amidst the trials of life. In God’s perfect time “Joy Will Come in the Morning”.
Mark
Wonderful poem. Thank you so much…
Mollie
Hi Mark. We wanted to tell you that Alana’s is bilirubin went down four points to six, and all her liver tests are normal and stabilizing…the actual transplant doctor just called us and was very happy with the labs. He believes they are going in the right direction and she’s going to go back to school tomorrow for the first time and see how she does…she is really doing well here today and the itching has eased up some. I just want to thank you for praying and ask you to continue to pray we know the Lord has done all this and we give Him all of the glory. Of course we know this disease is still there but it sure is good to have a break and hopefully get her back to a normal level for a while so she can return to school and her friends. I feel very happy and it’s amazing how little it takes anymore to make that happen. Just a slight bilirubin decrease. I’m praying for you too… Am thankful tonight.
Mollie
Mollie,
This is certainly an answer to prayer for Alana. I pray that she will have many more good days than poor days. And yes, we still believe in a God of miracles. The way I viewed that when I had PSC was, “Lord, in whatever way I may glorify your name more, whether to heal me of this disease or to go through to transplant, your will be done.” And I will continue to pray that His will will be done for Alana. I believe Alana will be a blessing to everyone she touches and perhaps by the golden spirit she has as a down-syndrome young lady others will be drawn to our Lord through her and your family’s example of how one can go through suffering, yet have a peace that only He can give.
Keep in touch.
Mark
Thank you Mark. You are an inspiration to me. Definitely who God placed in our lives for “such a time as this”. I’ll be eternally grateful. I hope someday we can meet and enjoy fellowship. Our church has a website if you ever look it up. Vbtelyria.com
Mollie
Just wanted to let you know Alana is doing well. Her color continues to return to normal though the yellowish cast is still evident and her eyes too are still yellowish in the corners, but much better than even a week ago. I will be repeating her labs in about a week so hopefully more levels will stabilize.
For some reason the sodium levels were not taken on the last blood draw. Is that significant? I was told by th e doctor it’s just relevant to her diet?
Well she has been on this strict diet I’ve been following strictly. So I hope this is making a difference. I feel it is. Her urine color is almost normal! It had been brown, orange, deep gold, and now his t a bit darker than normal. So this improvement is great I think. I will keep you posted.
Hope and pray that you are feeling well yourself and your levels are good.
Prayerfully yours,
Mollie
I couldn’t do the MELD score without that sodium number but used old lab score and it is still 13, or 14, which is confusing but hopefully doctor is right and she is stabilizing and no strictures.
M
Hi Mollie,
Thanks for the update on Alana. So glad to hear she is doing well this week. I would definitely ask her doctor to make the serum sodium lab part of her standing orders when labs are drawn so you can keep an eye on her MELD score, whether he thinks it’s important to him or not, it is to you 
Lay a hold of the little things in her health and let them encourage you. PSC is a disease that will have it’s ups and downs but even in the downs there is always Hope!
I’m doing well. Doctor is leaving my meds like they are for a month then will test again and see how my Prograf levels are then. He gave me the choice to go up on the Prograf to be able to drop the MyFortic but I chose to leave well enough alone as that Prograf in too high amounts causes my feet to hurt something bad. Had a cortisone shot in my big right toe today. They did an x-ray and said I had arthritic spurs in that toe. It’s nice when your daughter is a surgery scheduler for a major orthopedic group. I was driving down the interstate today near where she works, called and she was able to squeeze me in for that injection before I got past her exit. Nice to have some connections in life 
Hopefully things will improve in the next day or so.
Take care and have a good week.
Mark
Mollie, it took several weeks for the yellow to dissipate after an ercp.
Mark, connections help a lot. Up until several months, ago, my sister in law was a nurse admin at Piedmont. There were several vacations there where I had a suite instead of a normal room. She even popped in when I was in the er when she saw my name come up on a patient list.
Does prograf have a reputation of causing physical problems?
Jeff
Jeff,
Yes, it does have some side effects. For me, the greatest side effect I’ve had is painful feet. Thankfully after some research and I figured out the problem I was able to get my hepatologist to reduce the Prograf level which has helped immensely although not completely eliminating it. Every time he tries to raise my level my feet hurt worse. Right now they are keeping my Tacrolimus level around 4.0-4.5.
Another long term side effect from some of my reading involves kidney issues. That’s why keeping the level as low as possible is the goal.
Mark
Jeff,
I didn’t know that about the yellowing. I just thought maybe it was also a sign she was worsening . Maybe sometimes it is but her bilirubin is dropping so I am hoping next labs show even more.
Is Mark OK? You directed a message to him. ?
Mollie
I’m fine Mollie. He must have not hit the blue reply at the bottom which allows all to see. We were just discussing some of the side effects of Prograf, one of the immune suppressants we take to keep our new livers going strong! Rest well!
Mark