Tuesday, August 25, 2009

One Year Later

A year ago today my transplant coordinator crossed the T's and dotted the I's and officially listed me on the transplant list. It is hard to believe that it has been a full year. Today my coordinator told me that she had taken another job in newborn pediatrics and my heart sank. She has been truly wonderful and I am going to miss her. I will honestly say that I shed some tears. Getting to know a new doctor or nurse isn't always very easy. I am not really a people person to begin with. Telling them personal things is even harder. Things in the transplant world can get pretty personal. And graphic.
Doctor: "What color is your poop today?"
Patient: "Uh, what? None of your damn business!"
I really don't want to start that all over again. (Sigh) I will miss you Mrs T.


I met with one of the new surgeons today at the clinic and he was very nice. He explained things to us like we had just walked in off the street. I was thinking to myself, "Dude, it's been 16 months now, we're not that naive." But it was also kind of refreshing to get a new beginners outlook on the big picture.
We spent about thirty minutes with him and he said that I am actually doing very well. I tossed some tears as I heard him talking about patients who are hanging on to dear life and who have reached a MELD of 40 and are deathly ill and on dialysis.
I still have trouble with the MELD score when I think of the people who are so ill and near to death, but their numbers don't reflect that. It seems unfair and I wish there was another way to measure a man's illness and be fair to them.


One year. It is hard for me to comprehend sometimes what all has happened within the past 16 months since I first got sick. I cannot begin to share with you all the changes that we have endured as a family. And yet, as hard as this past year has been on me physically and the mental anguish we've all had to share in, the year has been good to us and it has brought us much closer. All these moments combined have made things less painful.
I know that this year was difficult, and I suspect the next will be harder, but I also believe it will even be better.

Thursday, August 13, 2009

'm bck!

Well, for those of you that follow this blog, you may have noticed that I have had very little to post these days. I am pretty sure that I can attribute most of this to my state of mind. My attention span has really been wandering lately. I've written a few posts, but I haven't found anything I thought worthy of posting. Everything sits in my draft pile and that is as far as they've gone.
I went to see one of my clinic hepatologists for my 6-month check up and after a short review of me and my health he put me on yet another round of medication that I have to take 4 times a day. I am taking an antibiotic to rid myself of dirty poison gathering in my stomach. After my health assessment and talking with Lois and me, the doctor indicated that I was probably experiencing encephalopathy again and that the lactulose wasn't quite doing everything they need it to do. Lois and I were already in full agreement with this diagnosis even before we went to the appointment. We have noticed a big change in my attitude in the past few weeks. When the encephalopathy hits I get real ill-tempered and ornery. It can be very unbecoming.
The ammonia level on my last labs was at 50. The normal range is between 9 - 33. Three months ago I was at 37. I already knew things were not in my favor. Part of the liver process is that a healthy liver will break down and expel poisonous toxins from your body and you will either excrete them by sweating and going to the bathroom. In my case, I have to take many doses of Lactulose to rid myself of the ammonia gathering in my body. If you are living with an unhealthy liver, then the build up of ammonia in the body can make its way to your brain and cause mental confusion, which can cause the night and day reversal effects which often plague me. Severe encephalopathy can even put you in a coma and you can die. In my case, I can often be tempermental. As far as the confusion goes, I have experienced this as well. I will have to think about what I was just doing or about to do. I'll start out talking and then forget what I was talking about. These things bug the heck out of me because nobody wants to lose control. Every so often I will miss taking some of my meds. This irritates me as well because I don't want to count on someone else to take care of these things for me. I am usually very good with my daily regimen, but I sometimes forget about my night doses and Lois will ask me if I've taken them. I know that I'm in trouble when she starts asking if I've taken the Lactulose because that usually means I've been acting like a jerk.
While all these things have been going on, my mood has been somewhat depressed. I don't like this at all because it is a place I'm somewhat familiar with and that scares me. I am really trying with all my might to stay away from the big D.
And I have also noticed bits and pieces of confusion in my writing. I have been writing sentences like this: Today as I passed by a Hot Topic I decided to go inside and do some sightseeing because I thought it might be fun. I noticed that every single person in the store had a piercing either in their ear, nose, eye or navel. Most of them had more than one. That was just with their clothes on. The gal at the register had at least 8 piercings in her left ear and the other guy there had those holes in his ears that were so big you could stick your finger through them. Yikes.
Now, there is nothing wrong with this. But when I type it out some words don't always come out and everything in red disappears: Today as pass by a Hot Topic I ecide to go inside and do soe sightsee because I thought it might fun. I iced that every single pers in the ore had a pierc either in their ear, nose, eye navel. ost more than one. That was just with clothes. The gal at reg had east 8 in left ear and the other there had hose holes in ears big could stick our finger them. Yikes.
YEAH! That's what I thought. WTH? So this is part of the reason why I haven't been posting. Because I sound like a blithering idiot sometimes.

(Translated that says) Be cause I like blither some.

ave a ood day.