Score is based on lab results from last Tuesday (10 days ago), mainly it's due to high number of bilirubin and INR. Kidney is fine. Based on my own observation of my jaundice situation, I think the worst number probably was 5 days early. Right now, jaundice is much lighter, but still obvious. Appetite is much better now and I always feel hungry but limit myself to small meals and multiple meals. I still have no fatigue, no bruise, no itching so I'm still working full-time but trying to rest as much as I can.I This time it's very strange. Although I know I look horrible, I really didn't feel much unusual at all.
Has already talked to my liver doctor and scheduled transplant evaluation early next month (never did before)
Will repeat lab tomorrow.
Started a check list for my wife in case I fell into coma suddenly.
What else should I do? Anyone with similar experience I would appreciate you share your thoughts.
DHZ, I am impressed that you're able to work-smart to pace yourself with rest.
While not close to where you are, I would have a bag prepacked with stuff that you might need during a hospital stay. There is somewhat of a recent post on this board that addresses that-try the search to find it.
My parents have given both their kids a detailed snapshot of their financial situation-banks, account numbers.....Might be a good thing for all of us to give our spouse/kids...
Has your score been high lately or was this just a spike? Is this a cholangitis attack or worse? With you not having been evaluated for a transplant yet with a meld of 30 is scary with you not even being listed. With that score, you should get listed with no problems.
Do you have any MRCP history that is tracking the progression of your bile duct strictures and liver condition? What was the level of your Total Bilirubin? Skin and urine color can be an indicator that there is a spike, but I really don't think you can assign a number to what your score would be without the blood test as your mayo clinic friend did. I'd suggest to back up your assumptions with testing otherwise it might take you and your family on an emotional roller-coaster ride when it might not be warranted. I hope you get good answers to this unusual spike. PSC is a mystery, isn't it? Best to you.
I’m doing very well right now and I hope to be able to stay that way. Thanks.
I have been put on the list from 11/2015 to 12/2016. MELD score peaked at 2/2016 and then went lower and fluctuated around 20 until 7/2016. Then, my bilirubin number started to go lower fast. Now it’s just a little bit above normal range at about 1. Only thing I’m not satisfied is that we don’t know how it happened. I did nothing unusual, just like any sick patient should do, more water, rest well, no unnecessary medication, more vegetable less meat and no fat, etc… We, both me and my doctors, have no clue.