Congrats! I'm sure it varies center to center, but the following is my understanding of the process based on my experience at Georgetown. You won't be de-listed just due to fluctuations in your MELD. If you improve significantly and remain healthy, your transplant center may decide to de-list you. Generally you won't have to re-do the initial tests if your condition worsens and you are re-listed. Where are you listed?
Congrats! I'm sure it varies center to center, but the following is my understanding of the process based on my experience at Georgetown. You won't be de-listed just due to fluctuations in your MELD. If you improve significantly and remain healthy, your transplant center may decide to de-list you. Generally you won't have to re-do the initial tests if your condition worsens and you are re-listed. Where are you listed?
Congrats that you have something set up if you do get worse. Being kind of new to PSC, what determines your MELD? I go through a battery of tests each 4 months or so (bloodwork), but I really have no idea what constitutes my getting worse. Also what does a Cholangitis attack detail?
Have a courage mate! I know what does it mean, I already have two transplants in eight years, and that's not all. My hospital wanted to put me on the list again two years ago, crazy yes, but then I took the risk with vancomycin for about ten days. To make the long story short, bacterial infections are the main cause of all troubles with PSC, as those activate/reactivate it! Yet, two years later I still have issues and soon should go for more checks at the hospital, but I do take vanco from time to time, at my own risk of course. Doctors do not appreciate it much and don't support such idea, and they have no other 'cure' but to put me on the list, again, if things get worse.
Good question. i was once on the list after having blood infection (horrible horrible experience…it was worse than having pancreatitis). but after a couple of years i was taken off the list. I’m with JeffDC, is this good or bad?
Jeff,
This is great news, I think. Your quality of life has the potential to just turn around. If you were my partner, (i am the wife of someone with PSC) I would feel so thrilled to have that opportunity before us.
It must feel risky and crazy making, but stay hopeful and positive and it will put you in the best position for success! I am sure I speak for all of the group… We will be thinking of you and sending hope and good vibes and whatever else that promotes goodness and healing.
The Meld is a calculation based on three items in your bloodwork-creatinine, blilrubin and INR. If you know these numbers from your bloodwork, google "meld calculator" or something like that, and enter the numbers.
For my cholangitis attack, I had a stricture on a bile duct, causing the bile to back up and get infected. So the symptoms I had were some abdominal pain between my sternum and belly button, a fever that eventually hit 101.6, and my skin had a shade of grey and yellow. My liver doc had told be to get to the ER if I had an unexplained fever of 101 or more. These symptoms fit that category.
So the hospital gave me a lot of antibiotics and an ERCP did a balloon dilation that opened the stricture.
Semperfidelis1964 said:
Congrats that you have something set up if you do get worse. Being kind of new to PSC, what determines your MELD? I go through a battery of tests each 4 months or so (bloodwork), but I really have no idea what constitutes my getting worse. Also what does a Cholangitis attack detail?
I would say congratulations are definitely in order for you. I've been enjoying having myself listed in recent months. Labs are drawn every 3 months at first so your MELD of 18 will hold for those 3 months. Not sure about your hospital, but at the two I'm listed at in North Carolina I believe as long as you stay 14 or above you will stay listed. Also, if you get some labs done before the 3 months required labs come up at your transplant center and your MELD bumps up again, be sure and have a certified copy from the lab that did the tests sent to your transplant coordinator. He/She can get your MELD score bumped up on the transplant list based on those more recent labs as well. From what they told me, if you get higher MELDs in between required labs they can always bump it up. Of course that doesn't require you to send them labs that showed it go lower. Leave the high MELDs in for as long as possible. Hope this helps.