Liver Let Die (a.k.a. I'm a Liver, no a Fighter)

I will write this blog in green because it's the color for organ donation.

I've been meaning to post a blog about my health since, oh, December 07. So here I am, posting a blog about my health.

I got 4 sinus infections in a row, starting around December before I was diagnosed with sinusitis. Then I got the flu. Then I went to Omaha to get a liver biopsy and a colonoscpy (which mean 2+ days of fasting and laxatives that made me really sick). They gave me sedation instead of anesthesia, and it wasn't enough so I was sent home and came back the next week, having gone through a second painful prep, and did the whole thing over, this time under anesthesia. The colon looked good and the liver looked good, but my blood tests were showing elevated liver enzymes. Plus, I was having such back pain from the biopsy that I had to go to the ER twice.
Not long after my second ER visit I was back, but with a different pain. A CAT scan showed large cysts on both ovaries. I was put on birth control (Yay! No more responsibility! LOL)

I continued to have mild to severe pain in my liver area and practically no appetite. I also suffered from bad nausea and sometimes was not even able to take my medications.
I went back to Omaha for another liver biopsy this past week and, again, they gave me sedation. Again, I had to come back to do it under anesthesia. The biopsy showed chirrosis (hardening/scaring of the liver), but no rejection that they could find. My blood tests still looked back and my bilirubin was up (meaning that I am jaundiced, meaning yellow skin).

So now we are going to do a consultation about my pain and to see if I need to be put on the list for a new liver. We're trying to make the decision about if we want the possible transplant to be done in Omaha or elsewhere because some of the staff at UNMC were very disrespectful to me, to the point where I wasn't getting the care I needed.

Anyway, that's it in a nutshell. There are plenty more details, but I'm too tired and lazy to type them all up.

In conclusion, please be an organ donor because when you die, I'll need your liver. Toodle-loo!

*EDIT*

A friend emailed me with some questions about the above and I thought I'd post the answers here since there are some of you who might be interested to know.

So how do they determine if you need another transplant?

They look at all my recent tests and see if things are improving or not. For instance, the liver disease I have, called PSC, kills the bile ducts in the liver. When the bile ducts die, they leave scar tissue. The more dead ducts, the more scar tissue. The scar tissue is hard and is called chirrosis. Eventually, with the lack of bile ducts, I suppose, the liver will die. My liver is becoming more and more chirrosed, which means that the disease is moving. My liver enzymes are also elevated and my skin is jaundiced (high bilirubin), both signs of progressing PSC.

and will it take a long time to do that?

I'm not sure how long it will take. I mean, obviously there is a limit because if we wait too long my liver will die :P What we need to decide is where I'm going to have my liver transplant because that is where they will need to evaluate me. One thing to consider is which hospital has the most organs available to it; that way I could get a liver sooner. That aside, Omaha would be the obvious choice, but unless we can get some answers for why I was treated so badly there this last week, we won't be going back for any more procedures. Mom is working on writing a letter and such.

and are you going to go to Minnesota to see your pals at Mayo?

If UNMC doesn't work out, Mayo would be the obvious second choice. Again, the question of organ availabilty is there. Also, I would no longer be a pediatric if I went to Mayo and we have no experience with how they treat their adult transplant patients, so that would need to be looked into as well. Since my dad will be here this weekend, hopefully we can reach some sort of tentative decision so that I can be evaluated for the transplant as soon as possible.

and if they decide that you need a new liver, do they prioritize you, or do you have to wait?

I'm guessing that's where the evaluation comes in. It should decide how soon/badly I need a liver and all that other stuff, so that they know where to put me on the list. You never know quite when a liver will come and when your status on the list will change. For instance, if my conditioned worsened I may be moved up on the list. Or if someone was removed from the list, etc. It depends on my condition as well as the conditions of others on the list as to where I'm placed. It's all a big legal/ethic/medical to-do.

And I suppose most of you want to know about the incidents that happened in the endoscopy center this last week. Well, it's all very complicated. We expressed our concerns about recovery and our desire to have my IV left in for a couple days just in case I had to go to the ER (it was my 4th IV that week). Everyone was all, "Sure, of course, sure, no problem, we understand". After the procedure my mom had to leave and my Gramma stayed with me. The minute my Gramma left to see my mom out the door I heard the nurses whispering about me. I'd already complained of terrible pain and had been given morphine. I couldn't hear exactly what they were saying but whenever my name came up they would start to whisper and it didn't sound nice. They made comments about my mom leaving us "stranded" in Omaha and what an inconvience is was to keep me there until my sister could come pick us up later in the evening. When my mom was there we talked to the nurse to see if I could be admited because I'd had such bad recoveries in the past and she got rather snappy with us. The doctor came to see me later on and said no, I didn't need to be admited, everyone had pain after biopsies (even though we told him that I'd been having persistant liver pain for months and had had two ER visits after my last biopsy). He called me "sensitive" and commented on how the doctor who had done my previous biopsy and had had to stop because I was in too much pain due to my inability to respond properly to sedation, was mad because he hadn't been able to finish his job. He also commented that this doctor lived with "whiny females". Then they took my IV out, too. It's kind of hard to describe all the mutterings and the doubtful looks, but needless to say I went in the bathroom and cried and was afraid for myself in case I got really sick. I'm one of those people who can look and talk like I'm perfectly healthy but I can be in physical agony at the same time. Sometimes it make it hard for people to believe me. I cried some more when I got home and talked to my mom, who went bonkers, of course, and is now writing a letter and will not send me back there for any procedures.

In my day, at the Mayo Clinic, transplant patients were treated with the utmost of caution. Even for a simple biopsy I was admited and kept over night, regardless of how ready I felt to go home. Even the cosmetic surgeon who took out my wisdom teeth last year kept me overnight even though I felt fine and didn't need any painkillers. So, it makes me mad that my very real pain was treated so wantonly.

My mom said that she put my story together with some of the things the doctor who did my first biopsy had said and she thinks he sort of "spread rumors" that Rebecca Manner fakes her pain. Did it ever cross his mind that maybe my pain might be real because I'm immune to sedatives...?!?!? And he knew that full well since he once tried to do a colonoscopy on me when I'd only had sedatives and it didn't work.

So that's my long, long story