Monday, July 11, 2011

When do patients with PBC or PSC receive transplants?

I received an email from a reader the other day who has Primary Billary Cirrhosis (a condition that bears a lot of similarities to Primary Sclerosing Cholangitis). She is currently in the earlier stages of the disease, but is already experiencing unbearable itching. Her question to me (because, I'm assuming, she's wondering when she'll be able to get on the list) -- at what stage did Carl receive his liver transplant?

Carl received his transplant on August 8, 2007. When they wheeled him into the OR, his MELD score was 24. When we began the evaluation process four months prior, his MELD score was 16. Is this typical? Well, honestly, it is hard to say. At the time, we were told our that our hospital (Oregon Health and Science University) was transplanting patients with scores in the low-ish 20s. So, in some ways, Carl was pretty typical. However, in other ways, he was not typical at all. For one thing, he was only on the list for five days! A true miracle. Also, patients with PSC often wait a long, long time for their scores to inch up into the transplantable range. I remember (at our first evaluation appointment) asking his hepatologist, Atif Zaman, how long this whole process was going take. He said it could be years! Fortunately things moved along faster for us.

On the flip side, we have a friend who recently received a transplant. He also had PSC, but his score was much higher than 24 and he waited more than a year for his liver.

I guess what it all boils down to is everyone's experience is going to be a little bit different. There are so, so many factors that are taken into consideration. The bottom line, though, is that the sickest patients have priority. It is unlikely that someone with a lower MELD score will receive a transplant because they aren't sick enough. If your MELD score is high, you are probably experiencing complications and your life could be at imminent risk. If your score is low, you might be sick and uncomfortable -- but your disease is probably still manageable (the liver is such a resilient organ!). When Carl received his transplant, he was obviously one of the sickest patients at our hospital and in our region. Someone else with a score of 24 might wait a lot longer. It all depends on who else is on the list and when appropriate livers become available.


natwillsbrg said...

I think w/different states, it varies, cause I'm in NY, Cryptogenic Cirrhosis, & they're different circumstances other than the 3 blood enzymes that consist of ur MELD. As of now, my MELD is 12, but my Pulmonologist told me that it is going to sky rocket up due to my Pulmonary Arterial Hypertension (PAH). So, once I get another ECHO test, CAT Scan & Breathing test done, I will see the Pulm. in a month, she will view the scores, the transplant team will have a big meeting on my case & then determine wht my MELD should be. This is what's called "Special Circumstances". If you have certain other Liver related illnesses, as I, they DO take these factors into consideration, and raise ur MELD. In NY, your MELD MUST BE at 15 in order to get on the 'active' list. However, in NY Blood type O is a death sentence. You will not get on the 'active' list if you are blood type O unless ur MELD is 30! There's just too many ppl that need liver's that are blood type O, the most common blood type, which is the worse to have, since type O is only compatible w/O. The worst scenario for someone who needs a transplant. The best type is AB, which is also the rarest, cause AB can take from ANYONE. A lot of ppl think this is the reverse, but fact is the reverse is, type O can GIVE to anyone, but can only receive from O, and type AB can receive from anyone, but only GIVE to AB. I'm type A (so I can take from A or O) I've already found a 'living' liver donor, but the reality of the objective of ANY transplant clinic is to 'Wear out the Mileage' on YOUR liver, so to speak, cause transplant's an EXTREMELY dangerous procedure, survival rate's like 85% now for the 1st yr after transplant. A lot of ppl think that "Ok, I have liver disease. There's no medicine for it to cure it. The only thing that will make it go away is a new liver..WHAT ARE THEY WAITING FOR?" But when getting a transplant, it's not a're trading one set of problems for another. For example, the donor may have had blood clotting issues, or the arteries may mis-align w/yours & once you get a transplant, THERE'S NO TURNING BACK. You will need to be on Anti-Rejection med's for the rest of your life. Some ppl stop taking these meds after transplant, but that's like playing russian roulette w/your life! Just because your body didn't reject this "foreign liver" in your body a few yrs after transplant, doesn't mean that it will continue to not reject it. Fact is, YOU ARE NEVER OUT OF THE WOODS ONCE TRANSPLANT IS DONE! This is the reality of the situation, as I'm sure you know! God Bless!

Dawn said...

Hi -- Thanks for sharing how it works in NY. It is always interesting to me that there are so many differences from region to region!

I do want to address a couple of things you wrote, in the interest of keeping a positive perspective. First, I don't know how other hospitals operate but I do know that at OHSU the objective is NOT to wear out the mileage on a diseased liver. The objective is to keep patients comfortable and safe for as long as possible while they wait for a transplant, and for the patients to thrive and live long after the transplant.

As for trading one set of problems for another, I know for a fact that Carl is delighted to deal with the the minor set of "problems" he has now over the pain and agony he was experiencing prior to his transplant. Taking the anti-rejections meds? No big deal! He's alive and healthy. We need to thankful that we have these meds available to us. As for rejection, it usually happens early on. Sometimes, yes, it happens later (although this is not typical, at least not with PSC). The good news: rejection is manageable if caught soon enough.

I know that we need to be extra careful about so many things, and we have to keep a very close eye on Carl's health. I am not so naive as to think that he might not experience complications at some point. But for us, the reality is this: Our gratefulness for this transplant and the fact that they can even DO transplant is beyond measure. We've been given an incredible gift, and we're going to embrace it. The past four years have been fantastic. I sincerely hope you have the same experience!