Friday, April 11, 2008

Parts is parts........

"It's too bad she won't live.....but then again, who does?" - Gaff.

I have a few links on this blog to organ donor organizations that I support. I support them with good reason, as 10 years ago, my life was saved due to the generosity of one family. There were actually 5 of us that benefited as a result, and while I am not sure of the status of the other 4 recipients, I'd like to believe that they are all as alive as I am right now.

I will try to encapsulate the story of my liver transplant into one, easy to use pill. (Sorry, but when you are on the daily doses of medication I am, you tend to think in pharmacological terms.)

In 1985, at the age of 26, I was diagnosed with primary sclerosing cholangitis, a degenerative disease of the bile duct system of the liver. I lived with this disease for 12 years, and began to see the signs of advanced liver disease somewhere around late 1995, early 1996. I was placed on the transplant waiting list in February of 1997, and at that point, had about a year, to a year and a half to live.

Dealing with death as I did all throughout my EMS career, it took on an entirely different approach when it is the possibility of your own death that was staring back at you. The wall that helps you to deal with the death of patients crumbles easily. Your emotions run so wildly, that any of the scariest roller coasters in the country are nothing in comparison. I don't think I necessarily went through a Kubler-Ross type of event, but at the same time, you do find yourself looking in the mirror and wondering why all this is happening.

As the disease progressed, I began to exhibit all the hallmark signs of liver disease; jaundice, weight loss, loss of hair, etc. Things finally got bad enough in late July of 1997, and I was admitted to Mt. Sinai Hospital in Manhattan to wait for my shot at a liver. (Being put in the hospital is one criteria for being moved up on the transplant waiting list.) I still understood that it could be months before I received a transplant, but at least I had a shot. One week after admission, it happened, and on August 1st, I received my gift of life.

There is certainly more to this story, as it has been 10 years, getting closer to 11 now, since that momentous day. There have been bumps along the road: a rejection episode in 2002, an infection last June that almost did me in, but all-in-all, I really have no cause for complaint. I have 10 years that I might not have had otherwise. I have been able to see my niece, who was born 36 hours prior to the transplant, growing up faster than I care to think about, and I have been able to accomplish things I never would have had the opportunity to do.

More transplant stories later. For now, just remember, "Don't take your organs to heaven. Heaven knows, we need them here."

Now, the procedure is not quite like this, but, laughing a lot helps one get through such an ordeal....Fortunately for me, they did use anesthesia.....(Warning: Really not suitable for kids, but tame compared to other things.)


5 comments:

Spiffy Knits! said...

No time to view the video, and not sure I want to. As a fellow PSC sufferer, thanks for posting about it. And congrats on nearly 11 years. Here's hoping the good health continues.

Mr. Nighttime said...
This comment has been removed by the author.
Mr. Nighttime said...

Spiffy - thanks for the comments. I can understand about the video, but it is Monty Python. One needs a slightly warped sense of humor for that....;-) I see you're a writer/proofreader as well. I am starting to learn editing and proofreading. Do you belong to the EFA, btw?

Holly said...

Hi Mr. Nighttime--sorry to be coming so late to this comment party, but while I was busy ignoring my own blog, I ignored everyone else's too, and I'm only now getting caught up on some older posts. Anyway, I was very interested in this story. My mother also has that bile duct problem, but it occurred much later in her life and has progressed very slowly, thank heaven. She probably will never have a transplant, since she is already 70, but for a while when the doctors thought the disease was progressing more rapidly she was on the transplant list. It was really weird to see the way my family fervently hoped there would be a liver around when she needed it, at the same time they didn't feel comfortable being organ donors themselves. Me, I hope I never need a donated organ, and I hope that when I die, all my parts are in good enough shape to benefit someone else.

Anyway, I'm glad you got the liver you needed, and I'm glad you wrote about it.

Mr. Nighttime said...

Holly - Thanks for the good wishes, and it is rare for women to get this disease. Usually, they get a different, but related disease called PBC - primary biliary cirrhosis. PSC and PBC both attack the bile duct system, and the end result is the same, requiring transplant.

Glad to hear your mom is doing well! I know another woman, about your mom's age that has PSC too, and hers has stabilized as well....