Hi Everyone,
So my skin has been yellow for 6 months, at first very yellow and itchy. Which refected in my high bilirubin levels. But now my bilirubin has been back to within the normal range for 2 months but I still have yellow in the creases of my plans, soles of my feet and edges of my eyes.
photo of before I was sick, best minion impersonation and current photo.
Anyone know if it just takes a long time to go or is something else up, eg liver blockage still but not producing high bilirubin as I’ve cut out a lot of fat…
Hello Mummy,
First of all, some very lovely photos of yourself. I’m glad your bilirubin is down and hopefully it will stay that way for a good long while. When was the last time you had an ERCP procedure? How much URSO are you on? URSO often helps increase bile blow by thinning it giving you some quality of life but it doesn’t take away the PSC. Bilirubin levels can change quickly at times. If it’s been two months since your last labs, it is possible that a blockage has developed and the levels are creeping back up, thus the continued yellow skin. I will tell you though, that when you have a liver transplant, the day you wake up after surgery, the whites of your eyes will be white as snow and your skin will clear up in due course over the next few weeks and months. But until then, you are going to face an up and down battle I’m afraid. I’m not trying to discourage you in any way but just to be honest about these things. Do you know what your current MELD score it? Here’s a calculator to check it.
https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
Take care, and keep in touch!
Mark
PSC 2011 / Liver Transplant 2015
For several weeks after an ecrp cleaned up my bile ducts and caused my bilirubin to go back to “normal”, my wife could still see some yellow in the corners of my eyes.
But I don’t know about anywhere else.
Jeff
Hi Mark and Jeff,
Thanks for replying. I waited till today as I had my bloods done so I can update with accurate information.
My bilirubin is within normal range (in Australia that is less than 15) at 8 umol/L. I don’t know what this converts to for the meld calculator to work as it keeps on telling me it is high.
My other liver function results are still high
GGT 600 U/L
AST 49 U/L
ALT 109 U/L
Globulin 40 U/L
And the other concern is my cholesterol which is very high, they get concerned if it is over 7mmol/L.
15.4 mmol/L
The dr has suggested that it is actually the cholesterol that is causing the yellow around my eyes and in my palms.
I would be interested if others have had issues with high cholesterol and what their treatment was for it. Currently the plan is not to put me on medication as they don’t want to cause more issues with my liver.
I just did some conversions and my meld score is only 6. Happy with that!
