October 20, 2002
The first transplant
Yes, I had one, and I do not remember much of anything. I love the liver coma, at least for the first run-through. Below is a picture of me in surgical ICU with my brother. Pam was my nurse there, and she is beyond awesome!! That is a proper shout-out, I hope. This pic is also available with a not so accurate story in the Daily Tar Heel by Verna's ex-boyfriend.
Posted by erin at 19:00 | Comments (0)
September 13, 2003
Latest Numbers
My latest numbers suck. I was dehydrated and forgotten my immunosuppressant before my blood work on Monday. I reported an 800 and 600, ALT and AST (or vice versa). On Friday my repeat labs looked a little better with a 200 point decrease to 600 and 400. I wasn't admitted to the hospital, but I fear I may on Monday when I repeat my bood work again. My biggest concern is that I was recently hired as an NA on 3 West, the GI medicine floor, where transplant patients are treated for rejection. We'll see what happens.Posted by erin at 16:59 | Comments (2)
November 01, 2003
In the beginning...
Well, I have been reflecting on my transplantation a lot lately, duh. I have an unpublished post that I have been working on for about a year now that I don't think I'll ever publish, but that isn't what this is. I just don't remember if I've ever published anything about how it all happened.After several episodes of liver failure fun, my body had enough and put me into a liver coma just before I was to be admitted for a complete work-up to determine why I was swelling, why even though I ate nothing I could still produce anything, why was it all yellow, and what could the docs do to fix it. They never knew about the yellow thing, but by the time I was in the hospital that was gravy because I looked pumpkin orange. It happened overnight.
I was admitted on Thursday of Fall Break of 1998. I don't remember much if any of this part. This is mainly from what my family and friends have told me. The surgeons were consulted because the medical team wasn't progressing fast enough or something or maybe because I was just laying there dying. They decided I needed a transplant, and went with a working diagnosis of Wilson's Disease, which really means my liver was a shiny penny. My liver could not filter out the copper I was ingesting, so it kept it. This was confirmed in St. Loius two weeks later. I didn't have any other remarkable signs or symptoms other than a lot of copper in my blood, urine, and liver (of course). Mom says they tried very hard to find them like two hours or something with opthamologists looking for rings around my eyes and such.
The weird part is I wouldn't have minded dying. I had led an amazing life full of wonderful people and love. Mom, I know I said I'd never say that again, but at the time it was true.
I think I was listed for about five hours as a Category 1, and they found a match. I had the surgery the next day, and the rest is another story.
I do vaguely remember a million doctors asking me a million of the same questions like How much do you drink?, Do you take Advil? Tylenol? I admitted that I did drink, and they got really excited because they thought, "This is it." I drank about two glasses of wine per week though and they lost interest, but I got worried because I thought that was a lot. I mean, I drank almost every week. That seemed like a lot to me, but I realize now it was because of the crowd I hung out with in high school that I thought that that was a lot of alcohol. We didn't drink or party or really anything bad except curse on occassion. I'm talking about the nerd herd. We would giggle about sneaking out of bed to watch Late Night with David Letterman because, yes, most of us had bedtimes still.
I also disappointed the docs with my intake of analgesics because I did not like taking medicine. They did begin to latch onto the idea of the chemicals that I may have used in my organic lab class in Scotland. They were sure I was poisoned for about a day until all those lab results came back negative too.
I'll add to this later. This is only the beginning....
Posted by erin at 23:39 | Comments (1)
December 14, 2003
A medical end for 2003
SO I had my stent revision, and the doctors decided to remove the stent they had placed last month in my bile duct. They had found a stricture at my bile duct anastomosis site. OR my body decided to keep adding scar tissue at the place where they tied my bile duct to the donor bile duct.I am now stentless.
I am also very fortunate I am not a guy. Last night the boys played more Playstation bowl games and drank a little. They were so harsh to one another though. Dan admitted that he didn't treat me like this when I was sedated the day before. I wouldn't remember though, so big deal right? Woa, men make no sense.
Posted by erin at 11:43 | Comments (0)
September 23, 2004
Everyone wants to conform
Yeah, they do.Well, at least I do. Every so often, I wake up and am not aware that I am "special." Let's get this straight: I'm not sick; I'm special.
I'm specially immunocompromised and could die if I forget my meds. I'm specially bruisable because through life-saving technology my skin is, well, more fragile than before surgery.
I'm special because I actually received the greatest gift since I was born: life. I'm alive today because of this organ. I may miss being able to go outside when the sun is high in the sky, but I can still see sunrise and sunset.
Being a transplant patient is a mixture of emotion. Some days I'm so careful. And other days I simply do not care. With everything going on in my life lately, I've had more ups than downs.
I also work on the liver and kidney transplant floor now as a nurse. This has been one of the most therapeutic things I've done. I meet new and old transplants and see that I am not alone with my gift or in my battle. There are so many of us out there going through virtually the same thing. Years go by without a "speed bump," and we believe we are invinceable yet again. Then, the bottom falls out when you are feeling perfectly normal. It sucks, but the majority of transplant patients that I've met just step up to the challenge and roll with it. I see such courage in these people, and they give me strength for my next speed bump.
I love all of you who have helped me get this far, who have fought this battle with me, who have celebrated with me, who have loved me, and especially those who bring me hope.
Tomorrow will come, and it will be beautiful. I want to be there to see it. I want to be healthy. I want to live, and I just want to be normal.
Started:
2002-11-02 23:07:05
Finished! Today
Posted by erin at 19:07 | Comments (1)
Harry Potter and the Half-Blood Prince (Book 6)
