I somewhat know how to read these confusing blood test reports. I know what the norm figures are for us. What I don't know is how these figures compare to other people with PSC&UC. Our doctor does not help with the question, 'where are we on the grid?'.
Anyone feel like sharing figures?
Fiance's readings came in this week. He will be going to CPMC in SF next week to see a new gastro doc. Any advice on what sort of questions I should bring up. My list is long, but I'm not afraid to add more! ;)
I think everyone is different. My total bili is approximately 7.4. My scleras (eyes) are yellow and my skin is jaundice. My urine is indicative of a high bilirubin. My alk phos is over 1000. Overall, I feel great. I work everyday, however, by the end of the day, I feel somewhat exhausted. I have a living donor andis sheduled for a transplant tenatively in June. The bilirubin is concerning, however an elevated bilirubin is expected. Keep holding on to HOPE
Hope: Thank you for the reply. Nay's alk phosphatase figure has been around 215-230 for the past few months. His eye color changes throughout the week, or maybe it's me believing they do. Some days they are a bit yellow, some days clear with a hint of yellow. When he is tired they turn bright red. Because he wears glasses it's hard for me to discretely check his eyes. I've only seen them bright orange once or twice, a few years ago. I try to catch his urine color but he thinks I'm weird. (LOL I just love him so much I am on him like a hawk.) The bili number scares me. I just keep looking for the magic PSC bili number that tells me where we are in the world of this condition. It's very confusing.
Best of luck and prayers for your procedure! Keep us updated. Xx.
I don't know where you (& fiancee) stand with the transplant waiting list, but one important number that I did not see is the INR (a measure of blood clotting ability related to the liver). That number, along with the bilirubin and creatinine are used to calculate the MELD score which is used to see if you qualify to be put on the transplant list. (There are some multipliers that are used to calculate the final score.) A MELD score of over 20 will usually put you on the transplant list in the MidWest, and sometimes under 20 depending on the transplant center and your degree of disability. The hepatologist should tell you what your score is.
Normal ranges for all of the tests may be somewhat different for different testing labs.
Thank you EAD3! We have our visit tomorrow with the hepatologist out of CPMC which has a transplant program. Maybe 4 or 5 years ago Nay underwent all the testings for the 'list' at which point they said his MELD was too low (his bili was around 3 or 4 at that time I believe). This will be the first time I go with him to CPMC so I'm a bit nervous and unsure of what to expect. I'm going to look around to see if I can find that INR reading. Thanks for responding. I appreciate it. Xx.
Yes, I was going to ask about the INR. That's an indicator of blood clotting ability and it goes up as the PSC gets worse. High INR = easy bleeder. If I were you, I would go to the UNOS website (unos.org) and do some research there. They have a lot of information and there are links to other sites that can tell you a lot, too. I found one for the NLDAC and it's for financial assistance for living donors. Also, when you look at the lab tests do you look at the normal ranges and compare those to your fiance's levels? I've never seen anything that compares and likens all PSC patients. Might be out there, but would be very tricky to track. Albumin levels are important. My hep said she looks at that first. Also, his platelet count is pretty decent. Mine is so low I've needed platelet transfusions. My bili has always been in normal range. But that is one of the three tests used to calculate your MELD score - creatinine, bilirubin, and INR.
There is an ongoing study @ Stanford for Oral Vanco on adults with PSC & UC. They start you out at 500mg 3x/day and up the dosage until your labs respond. The old studies just used 500mg 3x per day like was used on the kids study and that wasn't a strong enough dose for adults they found out. So far it is working much better than the old studies on adults did. We are currently awaiting word from my hubby's doctor on trying it for him.
danabee said:
Dear BenY, I know you mean really well, and I have, on the basis of your recommendations and the link you provided, checked out the efficacy of Vancomycin. But it's not the solution for everyone's problem with PSC. It works and is almost exclusively used with children. That said, I do appreciate the fact that it worked for your beloved daughter with UC and PSC. I am really happy for you and for her. Best of luck.
