Day 5

Well my oldest is still a little sick but doing much better. Lois and I are trying to avoid it.
Today we are heading to Paradise for Thanksgiving. It will be a nice drive.
I just wanted to say Happy Thanksgiving to everybody and may you all have a wonderful new year.


 

Day 2

It snowed last night. At 4:30 in the evening the clouds hung over the valley like a thick blanket and the mountain tops of the Wasatch front were all but buried in them. It looked so beautiful. I wanted to go for a drive in the mountains.

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I took the girls to see New Moon and it really is nothing more than a love story in every sense. Oddly enough I never have cared for vampire movies. I am a science-fiction/horror flick nut, but I have always passed on the old Dracula movies. I remember seeing all the b/w Bela Lugosi movies and I think they kind of creeped me out. And I never did care for Anne Rampling.

I liked New Moon, although this Pattinson guy and Stewart aren't very good actors. I'm pretty sure Stewart plays that same role in everything she does. And just when I thought Pattinson couldn't get any weirder he goes and pulls his shirt off. I think she should have stuck with the wolfman. 

I actually like the Cullen's clan. The blonde not so much. I think Ashley Greene steals the movie just by being in it.

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I am off work for the next 10 days. This is day 2 and I have a sick daughter with a temperature of 101. I'm almost afraid to go near her for fear of catching something. I guess I could use some long handled prongs to slide her water and toast and stuff. I should get me some masks for times like these.

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...hmm?...

That is all.

Prime Time Shows Organ Transplants

I've been watching the new TV series called Three Rivers since the show first aired. It is a medical drama that centers around a fictional organ transplant clinic in Pittsburgh, Penn. I think my excitement about the show is that I hope its focus will shine some light on the subject of medical transplants and increase donor awareness.
For a brief moment on Sunday nights, the cameras will allow people to glimpse characters who are in need of a heart transplant. Or maybe it will be a lung, or a liver. Maybe one night the story will raise opinions about the moral and ethical debates of giving an organ to a reformed drug addict. Maybe it's about 'who is getting an organ first' when there is a slip up in the system and one Transplant Center thinks it's theirs when it's already been offered to another. Or maybe it's just about a clock counting backwards and a life running out of time.
The stories for the most part remain true to nature. They capture the end result of the horrific accident that sends an ambulance screaming towards Three Rivers emergency room. There is the girl who keels over at her gymnastic meet because she's too sick to stand from a damaged liver and the innocent little boy who gets crushed at the fair. There are also the friends and families involved and you get a sense of how it must be to have your loved ones hanging on to dear life while dear life is being ripped away from them.
I suppose in a way it doesn't really matter how they got there. It's really about what comes next and how they're going to get out of it. Will they make it out?

Carol Barbee is the producer/writer for this new series and she spent time researching for Three Rivers at The Cleveland Clinic with Dr. Gonzalo Gonzalez-Stawinski. His professional career as a surgeon carries a list of credits that include cardiac surgery, heart transplants and coronary artery bypass graft surgery, to name a few. Dr. Robert Kormos, who is co-director of heart transplantation at University of Pittsburgh Medical Center (UPMC), also provided input for the writers of the show. And perhaps one of the coolest things I thought that happened at the Three Rivers set was a visit by Thomas E. Starzl. Starzl has been called "the father of modern transplantation." He performed the first human liver transplants and is considered one of the pioneers of transplants.

I like the show because it offers a certain view into something I'm trying to understand. While I'm sure a big part of it is my connection to the transplant world, I am also hoping to be educated. Maybe a show like this will raise awareness for organ donations.
In July of this year there were more than 102,000 men, women and children waiting for an organ transplant, according to the United Network for Organ Sharing (UNOS). On average there are about 18 people who die each day waiting for an organ transplant. This isn't a very large number, considering that there about 100 more who die each day in auto accidents. But it is a death toll just the same, and when added to another and another, one begins to realize lives can be saved.

keeping up

I am starting to wear thin. My good days are slowly being overtaken by my bad. 
DeCoster was right (Deliver My Liver) when he wrote back to me almost a year ago and said, "I hope you are able to keep your wit and perspective through the times coming."

Even before I understood exactly what he was talking about, I had an idea that my life was going to change immensely. I just didn't know how much until months later.

I didn't know that walking from over there to here would be so much of a chore, or that bending down to pick up something would be so demanding. I didn't know that my legs would go numb from sitting too long if I didn't move or that I would experience a tingling sensation in my circulation as it traveled from one limb to another stretching all the way out into my fingertips. I didn't know that a pounding heart and gasping breath would leave me immobile on those rare occasions when I wanted to run, play, swing.

Later when my body began to change I would quietly turn and study the mirror. That's new. That's new. and, What the hell is that? Those things became my new mantra.

Now I just take cursory looks and tell myself that one day this will all be over. One day I will see my waistline without having to look in the mirror. I will be able to bend and tie my shoes. One day I will be able to take a flight of stairs without stopping for a breather. One day maybe I won't need promethazine or zolpidem or beta blockers. One day I might sleep normally and wake up with the rest of the world.

For now all I can do is imagine what comes next. Will I get confused? Tangled? Distraught? Most assuredly. Already I am.

My friends say, "Hang in there, buddy."

I say, "I am."

It is strange to be in this place. Watching it all fall apart. Once in a while I have to absorb it. Process it. Dwell on what comes next. 
And that is okay.
That is okay.

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.

• Okay Fine Dammit

• What The Doc Didn't Tell Me

• Suburb Sanity

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.

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.

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)

On Being Tired

I get asked from time to time regarding my health, "How are you feeling?"

It is not always the easiest question to answer. For one, it depends on who is asking. Some people generally want to know, while others seem to ask the question out of courtesy, as though some unwritten code suggests they have to. It is somewhat peculiar, to say the least, and I find it quite odd when I realize that they actually didn't want to know; they were just making light conversation.

It is a fine line and I've come to recognize the sincerity of the question when I hear it. I wish I could tell people everything that is happening with me in five sentences or less. That would be nice. But it isn't possible.

I was thinking about this the other day when somebody asked me that very question and all I could say was, "Pretty damn lousy."

It is direct and to the point, and very descriptive. But my response was a little too forward and I'm afraid I left them feeling a little uncomfortable as they walked away.

When I first started this blog I went looking for other blogs that had to do with liver transplants and I found quite a few of them. One of them was The Real Life - My Journey Living with Cirrhosis to Transplant by Nancy White Real. At the time Nancy had just had her transplant and she was starting her journey to recovery.

I spent a great deal of time reading through her post and found that I identified with a lot of the symptoms she described. There were a number of post in particular that caught my eye and that I could relate to. Two of them had to do with tiredness. Tiredness is perhaps one of the hardest things I have struggled with since all of this started. I am constantly in a state of exhaustion.

Today I was reminded of this as I finally had to surrender to it and come home. I was also nursing a bad stomach ache on top of it. While I was at work I wanted nothing more than to find a place to curl up and take a nap, and if I could have found a place I would have logged in on break and done just that. As it was, I finally went home and slept for three hours. I am feeling much better now.

The following is a post that I read on Nancy's blog. It is a description of how we people going through liver failure begin to feel after our health begins to fade. I thought that its message was one worth revisiting because it says a lot about the transplant patient and his/her symptoms, and it provides remarkable insight into how a person going through chronic liver failure often feels. This is an excerpt from a book she found. I am not really sure what the name of the book is, but the name of her post was called:
Extreme Tiredness in Liver Disease 

(open letter to my transplant coordinator)

Dear T.C.,

After having you for my transplant coordinator for the past year I was really disheartened to hear that you are leaving the transplant team. I understand the need for change, and I certainly understand your desire to do something different and something that you've wanted to do for a long time. I think you will do an outstanding job in newborn pediatrics.
I just wanted to say that I appreciate all that you've done for me over the past year. Every time I've had any questions, you have done what you can to answer them. Even if it took you a day because you were very busy, you have always managed to get back to me and not leave me hanging. Whenever I was going through a panic attack, you were always able to calm me down and assure me that nothing was wrong. You have always been able to assess the situation and explain to me that it was just a new symptom of the disease that was presenting and, if needed, you had the doctor call me right away. Which, incidentally, has happened more than once. Generally things were resolved with new medication and life continued on.
I have always appreciated the fact that when my wife and I had appointments, you always treated me with genuine respect. I have literally had consultations where the doctor or nurse chose to talk to my wife and not even look me in the eye, for whatever reasons they had. Apparently some people assume that because I'm sick, then perhaps I might not be able to understand them. Sometimes it has been necessary to say, "Yoohoo...eyes over here." That is a discourtesy that you have never inflicted on me and I thank you from the bottom of my heart.
Anyway, everything that you have done for me (us) has been greatly appreciated and Lois and I are going to miss you. On a professional level, you have done a great job and on a personal level you have been a good friend. We will miss that.
I am guessing that you have many patients pre- and post-op who will be very sad and shaken to see you go. I can only imagine that this will be hard for some of them (not to make you feel bad). But I think I can safely say that a lot of us are going to miss you.

Sincerely, Lois and Beaux (this is Beaux, by the way)

Oh yeah...and don't be a stranger. Drop us a line sometime.