Wednesday, October 28, 2009

Three Post on Organ Donation and Awareness

Here are three post that I have read over the past few months that touch on organ donation. I thought they were all well written and informative. Each of them offer a different outlook on organ failure, organ donation
and organ awareness.
Over the last year I have run across a lot of material that I find useful as a transplant patient. Most of it comes from people who have already undergone a transplant or who are about to. As a person going through chronic liver failure and who has been on the waiting list for over a year now, I know that life can often be very complicated and challenging. The depth of emotions and the physical aspects of the disease can be very taxing and overwhelming for any individual and on their families.
One thing that I've noticed that seems to be a constant; is that the need for tissue and organ donation awareness remains very high. Often people do not recognize this until someone they know has been affected or they themselves are in need of an organ transplant. Many people do not understand that people who are on a transplant waiting list are usually on it for many months and even years; their body functions often failing as time goes on.

Thursday, October 15, 2009

High Risk

(Click on photo for closer view)

Today one of my co-workers didn't come to work because he's got Swine Flu. I figured since I have a compromised immune system I'd better see if I could get in some place and see if I could get the H1N1 vaccine. 
I called my transplant center and they referred me to the Health Department. They said they were out and didn't expect any until November 1st. 
I then called my doctor's office on the off chance their clinic had some on hand and struck out. It appears it is unavailable everywhere and if there is any around you have to call all over the city and hope that somebody tells you they have some.
I have not really given Swine Flu much thought because I have honestly been more worried about West Nile disease. Especially because I live in a neighborhood with a million mosquitoes. But now that the flu has made a stop in our shop I'm kind of weary. Suddenly two weeks seems like a long ways away.

Sunday, October 11, 2009

On Working...

Yesterday I was supposed to go see a lecture with Daniel Schorr and Roxana Saberi; I had really been looking forward to seeing this with Lois. Instead I felt nauseated all day long and I had to work a 12 hour shift. When I came home I rolled myself into a ball and curled up on the couch.
I am starting to feel worse these days. I don't share this for sympathy, but more for fact. But mostly because this is really some what of a journal. It is like my log so that I have something to look back on. I'm not sure why I started this, but it has been like therapy. For some reason it seems important that I document all this. And then there is also the friendships that I have developed. They have become both dear and important to me at the same time.

So I come home and I curl up into a ball and there is a movie on T.V. called: Life as a House. I have no idea what it is about and I am too tired to change the channel. So I watch.
Dude, this movie sucks of bittersweet. This man (Kevin Kline) is dying from terminal cancer. And in the meantime nobody knows that he is dying. He has an ex-wife played by Kristin Scott Thomas, who is disheartened because she has a mixed-up teenage son who takes drugs and just wants to die or be left alone. He doesn't seem to know what he wants. So Kristin sends her son to live with his father (Kline) for the summer.
I was getting ready to change the channel because there was all this yelling and screaming going on by basically everyone and then I guess my morbid curiousity got the better of me because I didn't. So Kevin Kline is tearing down this house in southern California and he is going to rebuild it. He is trying to get his son involved by helping him, but the kid just hates everything in life and refuses to budge. Eventually all these other things start to happen in the film and the kid starts helping his dad build this house. That is really the storyline, that and the fact that the whole family grows closer and they eventually find out that dad is dying.
So, I'm lying there wiping tears off my face and I can't help but think about my own personal stuff. I'm getting sicker day by day, but I can't and don't, share some of the things I am going through. I mean, when Lois picks me up at the end of the day and she asks me how my day went, sometimes it just doesn't seem necessary to say I was miserable all day long. What good does it do. And unless I come home and crawl into bed for a 2-hour nap I think she's pretty good at assessing whether I am feeling all right. Plus, if I am feeling awful I will be the first to tell her.

It is clear to me now that I am getting sicker.
Earlier when my body started changing my heart sank. There were bloody noses, and weight gain. There were skin lesions and the gynecomastia. My appearance hit me hard, but I managed to keep myself from going insane. It was what it was. The stuff that I couldn't see also hurt. The internal physical stuff. Now all these things are finally ganging up on me.
I am really sick. My biggest worry now is being able to keep working. I think this scares me the most.

Tuesday, October 6, 2009

The Gift of Strangers

I received a gift the other day that is very unique in many ways. Perhaps you've already read about it on my wife's blog last week over at Miscellany. I was given a Gift of Love and oddly enough it came to me from strangers.
My wife Lois was befriended by a woman from California through an email correspondence a while back. They started e-mailing each other and Lois conveyed to the woman that I was on a transplant waiting list. As some things have a way of leading to another, this is what began to happen. The woman asked Lois if she could say a prayer. Lois of course said yes, and told me about it later. The next thing that happened was we were asked if her church could make me a prayer quilt. I thought it was a beautiful gesture of goodwill and I said yes. A few days later I received this from Fed-ex.

I read the brochure that came with the Prayer Quilt I received and this is what it said.
What is a:  Prayer Quilt?

A Prayer Quilt is a lap-sized cover, hand tied with square knots.
As each knot is tied, a prayer is offered for the person to receive the quilt. 
When fully tied, the quilt is given as a gift of love and prayer.
A Prayer Quilt is a statement of our faith in God 
and our belief in His power to comfort, strengthen and heal.

This label was also attached to the quilt. Now being a creature of habit and perhaps being a little OCD, I immediately started counting the knots. The first time I counted the knots I came up with 37 knots. But then the OCD kicked in and I decided to count them again. I came up with 38, and then 39, and then 41. Every time it was different. The last time I counted the knots there were 42. I thought that it was interesting that each time the count kept changing, and so therefore the prayers. This gift is absolutely awesome. But I'm kind of torn about what to do with it. Should I hang it on the wall? Put it someplace safe? Or wrap it around myself when I'm laying on the couch?

(Click on the photo's for a closer look)