More than I wanted to know.

OK, this is going to be liver transplant intensive. I want to get this written down in one place while I still have half a handle on all the information they attempted to drown me in this morning. Feel free to skim/skip.

First of all the United Network for Organ Sharing (UNOS) website came highly recommended as a web resource. Interestingly enough, it was not one of the top hits when I tried to do web searches for transplant information. Their method of scoring how sick you are, MELD (Model for End-stage Liver Disease) is the one my hospital uses to rank people on their waiting list. MELD is an attempt to standardize all patients and rank them from 6 to 40 by measurable aspects of liver disease. It’s a great idea … when it works. More on that one later, though.

The MELD formula uses INR, serum creatinine and bilirubin levels in a mathematical formula to score each eligible patient waiting for a transplant. When adopted in other regions of the country, using this method decreased the number of deaths of people waiting for transplants. Ordinarily, a MELD score of 21 or over is good enough to put you on the critical part of the waiting list, and a score over 25 is considered urgent. I’ll know next week what my MELD calculates out to be.

I saw a hepatologist, two surgeons, and a cardiologist among the other specialists I was bounced between today. All assured me that a liver transplant was really my only option and that I would definitely be placed on the ranked transplant waiting list. That is not necesarily true of the other five people who were evaluated with me today, some of whom may have alterative live-saving measures available. My problem isn’t whether or not I’ll end up on the list, but rather is where my MELD score is likely to place me on the list.

We don’t know what caused it for sure, but I have been diagnosed with Budd-Chiari syndrome, a relativly rare liver disease in which the veins that drain blood from the liver are blocked or narrowed. This has been an ongoing, chronic thing, and because of this my serum creatinine has never gone above normal. My bilirubin is highish, but not enough to cause obvious jaundice in me yet. My INR is also elevated, but not bad. Even though both the hepatologist and senior surgeon both told me that my cirrhosis is severe and extensive, my MELD score will probably end up being rather low, and not indicate my actualy need.

Both independently told me that there were ways to petition UNOS for permission to add additional points to someone’s MELD in cases like mine where the score itself did not reflect severity and stage of disease. Both said they’d be getting back to me next week, after my score was calculated and it was known where I stood. So the ball is in their court, and I can really do little more than wait at this point to see how things get handled.

Interestingly enough, the Big City Hospital is pushing “living donor” liver transplants. They’ve now done a few, with very good success. Both my sisters are champing at the bit to be evaluated as potential donors. The idea fills me with unease, because I do not care to put their lives at risk simply because mine is. I’ve agreed to let them be evaluated, but won’t commit any further. There’s no point in worrying about it anyhow until I see how I fare with the MELD score. As one doctor put it though, this could be scheduled and done before Christmas if my need were great enough, and he seemed to feel my need was great enough. THIS part of the trip I also was not bargaining for.

Meanwhile Big City Hospital ran yet another dopplar echocardiograph on me, as well as a standard EKG. The cardiologist was quite displeased with my resting heart-rate (which is currently about 116 bpm) and seems to feel there is something else going on there. He’s going to evaluate my dopplar and wants to see me back in one month. THIS I did not expect. Nor, I think, did Dr. Liver or Dr. Primary, both of whom I complained to about my racing heart and neither of whom were particularly concerned by it. Dr. Heart was also dismayed by the fact I hadn’t seen a cardiologist in three years, even though I’d gotten the all-clear from the cardiologist from the hospital during my two-year follow up visit and was told they didn’t need to see me any more. *sigh* I might as well buy a cot and camp out in doctors’ waiting rooms at this rate.

Meanwhile, the fluid in my abdomen continues to gather. This evening it again hit the “critical mass” point where it starts to induce hiccups. I still have nine days before the next scheduled tap, and I plan to simply try and live with it till next Thursday if I can. I am still returning to work tomorrow, and I don’t want to spring too many days I’m planning to miss on them all at one time. As it is, I’m going to miss one day a month for getting the fluid removed from my abdomen, a day next month for the cardiologist, a day in the near future for an upper GI scope (to be scheduled tomorrow), and a half a day for a dentist visit in two weeks (as if life weren’t bad enough). I also have to figure a way to work a chest x-ray into this mix, although I’m hoping that maybe I can do that over a weekend.

One of the nurses who worked with the liver transplant people remembered me from five years ago when I was in cardiac ICU for my heart. I didn’t remember her, but she was one of my ICU nurses at that time. She remembered quite a few details about my stay, especially the heparin allergy part. It was rather embarassing that she remembered me so clearly, while all I had was hazy recollections of her at best. My only excuse is that I wasn’t exactly at my best during my ICU visits (I was in and out of CICU three times during my stay). I’d best take better notes during my transplant stay!

I’ve still not downloaded any pictures from my camera, and I’m way to tired to even think about trying to do it tonight, so details of the weekend trip are just going to have to wait another day or so. Sorry about that, folks. I wanted to get today’s proceeding jotted down as quickly as possible though, so I didn’t forget anything.