Sunday, December 13, 2009

A Couple of Things

Today wasn't a very good day. I woke up a little before 6 am and spent all morning retching with dry heaves until I finally got sick. After 3 ½ hours of this I made my way back to bed exhausted and was extremely sore all over. I think I am clear of whatever it was. Lois seems to feel that it was the chicken we ate last night. I'm not very sure. It is hard to say what brought it on and whether or not it has to do with my health issues. I'm leaning toward the latter.
I was just thinking, I haven't been this sick in a long time. It is nice to think of it in this way. Despite all of my ailments, most of them have been minor considering the circumstance. I have not had to be rushed to the hospital in ambulance or had to be admitted to a hospital for any length of time. Looking back I would say that I've been very fortunate. My MELD score is still very low and I am still able to work. So I guess I got that going for me.


This journal is a year old this month. I want to take a moment to say Thank You to everyone who has been kind enough to stop by and visit and to all those who have taken the time to become friends during the past year. Your friendship means a lot to me and I am grateful to have met all of you. Some of you have found your way here through my other blog and others through the transplant network. There are also many of you who have been writing to me through e-mails and offering your support. Most of you have already been through the transplant experience or have had a spouse that has gone through it. Your encouragement and kindness to reach out and share with me your own experience has been a true gift to me and I thank each and every one of you for this. There is no way for me to describe how this makes me feel. I appreciate your kindness and all the well wishes.

Wednesday, December 9, 2009

In a Nutshell

Lately I've been feeling sore. I never know when the pain will come. Sometimes I have bouts of it. Sometimes it is like jolts of electricity shooting through my body. It may be in my back or in my stomach. It may travel through my shoulders or my legs. They are usually brief, like they are subtle reminders of what comes next, screaming this is that. Sometimes there is no pain. Sometimes it is just an unrelenting tiredness that has no boundary. I must just sleep. Sometimes it is a persistent nauseating feeling in my stomach.
My muscle mass is slowly wasting. That means my strength is leaving. I am going to have to work on this. If I can do anything for myself right now then this is it. I need more exercise.
I haven't been writing very much because I keep losing my train of thought. I don't think it's terribly bad, but it is certainly more difficult. Sometimes I will be talking to Lois and I'll lose the words. I have to stop and think about what it is I'm saying. She'll ask me repeatedly what it is I'm trying to say and then I will get frustrated and tell her to hang on a second. This is a big worry for me. I don't want to lose my mental faculties.
My psoriasis has returned. I was hoping that I'd have my transplant before this happened. I'm not sure what to do about this new development because it takes a lot of time to treat it and it is uncomfortable. I was actually thinking about asking my doctor about trying the interferon treatment again to see if we could fight the HCV. I figured that if I was going to be miserable for the next few months then maybe I could give it a shot and see what happens. But the interferon has a nasty way of making the psoriasis flare up so maybe that won't work right now.
I realize that this post probably sounds kind of depressing. I think I'm a bit overwhelmed these days. Up until recently I've tried to keep my head on straight. And in all honesty I think I've been doing a pretty good job of it.
I hope to be feeling better by the next time I post again.

Thursday, November 26, 2009

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.


Monday, November 23, 2009

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.


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.


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.



That is all.

Sunday, November 15, 2009

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.

Sunday, November 8, 2009

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.

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)

Saturday, September 19, 2009

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

Wednesday, September 16, 2009

(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.

Friday, September 4, 2009

Me, One Year Later

This was my first blog post, written just a year ago. I come back to it every so often only because it is like a solemn reminder of my place in the world. It is like taking a look in the mirror for me. It conjures up images of a distraught child looking out of a fogged window into the rain. I see a woman looking into a mirror with tears in her eyes. There is a man in a fit of despair and anger is on the rise. And even though I see these things; I see each of them walking away with renewed hope in their eyes and the beginning of a smile on their face. I see them reborn with some inner faith.
I originally posted this on my other blog because this one hadn't yet been conceived of. And once I started writing about other things I knew that I couldn't write about my liver disease in the same blog. So I eventually started this one, The Paradox Syndrome.
Even the name of my other blog This Isn't Happening suggested my need to want to write about everything that I was experiencing. I wanted to write about the anger and pain and the grief that I had been overcome with. I wanted to laugh and I wanted to cry. I wanted to smile and I wanted to joke. Eventually my own spirit began to change and I was able to do all of them from post to post.
In the beginning I didn't realize that I was about to share this with just anyone. I was still very much alone in it. I would not share my anguish even with my family because I knew it would hurt their hearts. But I learned those feelings were no longer secrets, and I would find that out soon enough as I watched my wife weep and wipe tears from her eyes every time I wrote something. Still, my need to put pen to paper was a driving force and I continued on.
A year later,  my spirit still wavers. And as haunting as all of this has been I am moved by my own recognition that life is fleeting. It is easy to hold on, but it is harder to let go. Occasionally I am that conjured vision of that boy staring through the window.
I wanted to re-post this because it has been a year now since I started all this. This is truly a reflection. While I may look at death with different eyes, I now look at life with open eyes: This Isn't Happening 

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.

Friday, July 24, 2009


These past two weeks have been really hard on me. I suspect even the medicine I am taking is starting to take second seat to what my body demands. I purge myself with calcium, vitamins and potassium, but none of these things take the pain away. They are just nutrients my body needs. It is getting harder for me to move around and I am constantly exhausted. I have however managed to provide myself with some night time relief as far as my muscle spasms are concerned, but the muscles themselves are constantly sore and I ache. On top of this I have a back ache that is killing me. I think I probably tore a muscle moving furniture. I guess I should go see my regular physician.
Aside from the physical discomfort that I have going on, I think I am mentally wrestling with the biggest dilemma of all. How on earth are we going to afford to pay for my after care drugs if I am unable to get help from the Indian tribe? In the last few months Lois and I have managed to do things I thought virtually impossible. Getting my adoption records opened was one of them. We are now working with the Pasque-Yaqui Indian tribe in Arizona and trying to figure out what steps are next. They tell us this could take months. There are days when I feel as though I don't have a lot of months. On Monday I am getting new labs. I am anxious to see what this reveals.
I am trying to keep a level head about all this, but as my health declines I am starting to worry. No after care drugs means No transplant. This is hard for me to fathom. And all I can see are giant red letters stamped on some insurance forms that say: DENIED: THIS CANDIDATE HAD NO MONEY. Isn't it hard enough already to have to face these odds? Three to One.
This is what they tell you your chances of survival are -- 3 to 1. In the first year, roughly 17,000 people will need a liver transplant and only 6,000 or so will get one. The other two-thirds move into the next year. Of that number one-half of them will be removed from the list for whatever reason. Maybe they have another condition that makes them ineligible to stay on the list. Maybe they have been removed because they are not following the rules. Or perhaps they are no longer candidates because of some other reasons. Or, they have already passed away because it was too late. The other half will then move into the following year if nothing becomes available. This confuses me. They are basically saying of that two-thirds, half will die. So why don't they just say that in the first place? It is really kind of a 50-50 thing from the start.
But anyway, THIS CANDIDATE HAD NO MONEY. How messed up is that?
When I get high enough up on the list what is going to happen? The doctors will be doing their review board and John Henry, Itsy Bitsy and myself will be next in line. But then so and so will say, "We're going to have to scratch out Beaux. He still doesn't have any way to pay for after care. Who's next on the list?" It will be that simple. I will not get the phone call. Well...actually I will. The finance people will call me from time to time and politely ask, "Have you figured out what you're going to do yet?"
And me: "Uh, you mean other than waiting to die, butthead?" I suppose I'll refrain from the sarcastic wit, seeing how they do have the power to knock me entirely off the list. There is nothing better than having my life placed in somebody elses hands. Truly.

The other day I was telling Lois it seemed so odd that I actually had people following me. When I first started this blog it was really just a record. Maybe it would be a good way for me to vent. And I thought that maybe there were others out there that I could talk to who were experiencing the same things that I was. All these things were truths. It has been really good for me and I have learned many things about this illness. I have also met many people in the blogging community and people who I correspond with by e-mail. It occurred to me that I have never said "Thank You." I love that people e-mail me and leave me comments. It lights up my day. As hard as things have been, I find comfort in a single sentence that just says, "Hello" or "Take Good Care." These things bring a smile to my face and sometimes tears, but they are a welcome and a blessing to me. So, I want to share that with you all now that it is on my mind. I am truly a blessed man. Thank you.

Wednesday, July 8, 2009

A Little Relief

I am now taking two pills to help control my muscle cramps. Not two different medicines, but a double dose. My transplant coordinator asked me the other day if the extra dose was helping me at all. I told her that I was still having problems and that sometimes I still woke up in the night with muscle spasms. We have already boosted my potassium intake and my calcium to help make sure I don't have an electrolyte imbalance. But even that hasn't helped. I have also read that most people going through liver failure have trouble with cramps until after transplant and then they go away.
The other day I got a terrible cramp and my wife had a suggestion. "Maybe you should run one of those body massagers over your muscles and see if that helps." We found a massager and the next time it happened I ran it across my calf and in less than 15 seconds the cramp had started to dissipate until it stopped all together. Later that night after I went to bed I was awakened by one of my awful night time spasms and I used the massager. It took only seconds for it to go away. I am not sure if this is really working yet, but it does seem to be doing the trick.
I am really psyched about this new discovery that Lois has come up with and I am hoping that it is a solution to my problem. Before this, it usually took several minutes for my cramps to go away. Sometimes I would have to wake up and walk around and I'd lose quite a bit of sleep because of them. But now they are gone within seconds and I can easily fall back to sleep.
If there is anyone else out there who is reading my blog and have cramping issues, then I strongly urge you to give it a shot. It sure can't hurt.

Thursday, July 2, 2009

How I Feel

I keep forgetting how ill I am. I have been sick now for more than 3 weeks and it just won't let go. My immune system is shot. Compromised. I've had a runny nose, a scratch in my throat and a never-ending cough. These pale in comparison to how I generally feel.
When I remove a bandaid it will sometimes tear my skin.
At night when I sleep I will sometimes get the worst cramps ever and I whimper in agony.
If I bump myself I will bruise.
I am constantly tired and restless, and without my medication I cannot sleep or stay awake.
I make 173 trips to the bathroom each day.
My jaw hurts.
My eyes constantly water.
It gets harder and harder each day to move, bend over, breathe, get up, sit down, push, pull and sometimes even talk. I lose my voice because of my shortness of breath.
My tongue is yellow white blue or green and I am sure the foul taste I carry in my mouth is just as foul outside of me as well as in. I will turn my head when I talk to you. I will hold my breath. I dare not look at you for fear of shame. I curse to myself when you leave the room.
I am very sensitive. Tears swell in my eyes when I hear about the little boy who fell in the river. I will say let's go look for him. Off we go to search the black muddy river.
I will cry when you leave the room. I will cry when you enter. But I will also laugh.
I will make fun of myself. I will make fun of you.
I will forget.
Sometimes I will ask for permission. "Can I have that?"And sometimes I will demand. "Give me that!"
I don't know why.
I get bloody noses.
I will break out in a cold sweat. A minute later I am hot as hell. I will feel like passing out. I don't.
These are just some of the things I go through each day. Some of the things are just too personal or graphic for me to express.
These symptoms alone are nothing. I could handle one or two of them together. All at once it is a bit overwhelming. An onslaught.
Normally I hesitate to speak like this -- out loud -- but something happened.

This week a fellow blogger passed away from liver failure.
Mark Emmert was one of the first people to ever contact me who was going through liver failure. Sadly though, our correspondence consisted of only two e-mails. Mark wrote me the first time to ask me permission to read my blog. His second e-mail was to tell me that he had been busy and wasn't feeling well. We never communicated with each other again, but I didn't lose touch with him. I was in contact with his family. I am deeply saddened by his passing and my condolences go out to his friends and family.

Sunday, June 28, 2009

They're Winners!

After 6 days, 16 hours and 56 minutes, the Liverators crossed the finish line in Annapolis yesterday morning and took 4th place. As much interest that I had in this race, I didn't have a chance to follow it on a daily basis as I would have liked too because we were in Yellowstone for a few days. When we got back it was time to go back to work.
What little I got to read wasn't very much and I haven't looked at any of the video shots yet. I am in great awe of these men. I wonder if John Marino had any idea of what would come from his vision some 27 years ago. He was determined to do something different and he wanted it to be big. An annual race that has lasted 27 years was probably more than he expected. And while the Race Across America has always been an endurance race, it has also been used as vehicle for fundraisers by more than half its racers.
The Race Across America is not a stage race. You start on the west coast and finish on the east coast when you cross the finish line. Whether you are participating in a two-man team, a four-man team or the eight-man team, you only rest in shifts.
For some final statistics look
. Great Job Team Donate Life (TDL) Liverators.

Thursday, June 25, 2009

I'm Not Scared

Last week my transplant coordinator called me to see how I was doing with some of my new meds and then she said that she wanted me to go in and have an MRI to see about a shadow they picked up on a CT scan a couple of months ago. The shadow was dismissed back then as "It's probably nothing to worry about." and "I'm going to have a doctor look at the results." Months went by and I had all but forgotten about it until she called. I think what surprised me the most was that she was asking for an MRI now after all this time.
Now I have never had an MRI before and all that I could think about was all the awful horror movies I've watched over the years -- the ones where the person goes into the machine and doesn't come out alive, and if they do they are somewhat fragged. Plus I have heard all about the claustrophobia and the "OMG they are so damn loud".
And oh yes, the stories of the giant magnet sucking in all things metal. Looking forward to all this apprehension I must have stared at my underwear for a good minute before I put them on. I turned them over in my hands a couple of times wondering if perhaps there was some metal thread buried in the seams somewhere that I was unaware of. Surely they wouldn't have used metal thread? I thought to myself. Not really, would they? Resigned to the fact that that was just too farfetched I finally put them on. I will just ask the tech, he will probably know.
When Lois and I got to the hospital we were told that they were going to be running an IV for a contrast scan and that I had to fill out a couple of forms. Apparently it takes four forms because there is not enough room on a 8 1/2 x 11 sheet of paper to check off that many Yes and No questions and to make it even harder you have to sign the waiver dismissing them for anything that might go wrong. So of course by the time I go off to get undressed I have forgotten all about my underwear question because now I'm suddenly thinking about all those horror movies.
So I finally enter the room to see this machine and I get on the table and they start explaining all the things that will be happening. The first thing they ask me is if I am claustrophobic. I'm not really sure, I say. Well then, just close your eyes and you should be all right. "Are you afraid of needles?" I think it is a little late for that one but I answer anyway. "Yes, but I get shots all the time so I guess it doesn't matter." They explain to me that they are going to have me hold my breath while they take pictures and then let it out when the voice tells me to. "Okay."
Now I had done some preparing for this so I thought this should go pretty smoothly. I finally resolved that there was no such thing as metal thread and that science fiction is just that -- science fiction. I'm not going to turn into hamburger. At least I had hoped not.
And then they roll me into the machine and they place some earplugs in my ears and ask me if I can hear them. I looked at the nurse and I nod. "You're going to have to speak when you get in there." I nod again.
I am in there for no more than a minute when I realize I have to go to the bathroom. The nurse behind the wall tells me that this will take 25 minutes. I'm thinking to myself I prepared for this. I just asked to use the the bathroom before I came in here. So I'm lying there listening to the sounds of pings and low firestation blares and all I can think about is going to the bathroom. The recording says: "Breathe in...hold it...(tick-tick-tick)...relax."
The only thing I could think of was what my brother-in-law told me to do. "Just take a nap while you're in there. It's the best thing you can do."

Wednesday, June 24, 2009

TDL Liverators update

Team Donate Life (TDL) Liverators hit Timestation #32 in Jefferson City, MO., at 19:04:00 tonight. A distance of 1911.70 miles from the start. I read a couple of blogs from the team members and they are all exhausted and sore. The crews are excited and full of adrenaline. TDL Give Hope arrived a couple of hours earlier at Timestation #32 at 17:05:00 and proceeded to Timestation #33 racing through severe heat and into extreme weather with thunder and lightning storms. Temperatures have been brutal and reaching into the 90's with almost 100% humidity. I would suspect the thunderstorm would have felt nice. They were also faced with some very strong crosswinds throughout the day that would have been nasty.
I missed out on the first few days but all the teams seem to be doing great. There are 8 eight man teams and the TDL Liverators are in 4th place. I have been pretty excited about this race and I am hoping all the racers do well.

Friday, June 19, 2009

Pedal power

In 1982, John Marino organized one of the longest endurance bike races in America. It started out at the Santa Monica pier in California and ended in front of the Empire State Building in New York City. It was called The Great American Bike Race. There were four participants that first year: Lon Halderman, John Howard, Michael Shermer and John Marino. Halderman won the race in 9d 20h 2m. Since then, the race has evolved into what is now known as the Race Across America. It is one of the most challenging races in the world. Over the years the race has grown in participants and several divisions.

Team Donate Life has played a big part in the Race Across America for a number of years now and has used its participation to raise funds for liver transplants, liver disease awareness and organ donation awareness. The other day I ran across an article in a local newspaper and I saw that two of my doctors (one of them has recently moved to the University of Utah Hospital) are riding for Team Donate Life. They are called the Liverators. Dr. Terry Box and Dr. Ray Thomason have both seen me in clinic over the past year. After reading a little about Team Donate Life and the Race Across America I was very humbled by Terry Box's story and filled with a sense of inspiration. I knew early on that Dr. Box had had his own liver transplant and for that very reason I felt comfortable in knowing that I had a doctor who had actually experienced his own tranplant. What I didn't know was some of Dr. Box's back story until I read this article. At the time I felt lucky to have a doctor who had been through this operation. It was, after all, as hands-on as you can get for being a transplant surgeon. That gave me much comfort when I had questions of my own.

The Race Across America begins in Oceanside, California on June 20 and ends in Annapolis, Maryland. about a week later.

Wednesday, June 10, 2009

Some Changes

For over a year now I have been waiting to get sick. I am often left frustrated when I find my MELD score hasn't moved at all when I get my labs drawn. As I have said before, these numbers will ultimately determine my placement on The List.
Today (yesterday) I sent an e-mail to my transplant coordinator asking about a lab test they wanted done to check my kidney functions. I got an e-mail back telling me to just go get my labs drawn. So I did that. I received another e-mail in the evening telling me my kidneys functions were okay and that my MELD was at 13.
It seems odd that after so long things are beginning to change. Knowing that my numbers have started to move is almost too hard for me fathom after all this time. And even though they've only crept up a little; from an 11 to 13, it shows that something is starting to happen. Once again I find myself torn between two directions. A part of me wants to stay suspended, while another wants to go forward. But I guess I don't really have any control over that. I am still doing well for now. That counts for a lot.

Friday, June 5, 2009

What's new?

The last time I had my MELD score checked it was still eleven. On the scale of 6 to 40 that is relatively low. I continue to have shortness of breath despite the water pills I'm taking. But I weigh myself every so often at home and at work and I have dropped a couple of pounds. I went to see my dermatologist yesterday and we told him that we were going to have to stop taking the Enbrel due to our insurance not covering it. He said that he would see what he could do about continuing the treatment because it seemed important to keep me healthy and to keep my psorisis at bay. I was so looking forward to not receiving anymore shots.
I've been really exhausted these past few days and now I have a cold. Tired + having a cold = Miserable.
Now that the season has changed I've taken to riding the bike around the neighborhood. The other day I did 3 or 4 miles and I cramped up real bad later in the evening. I'm going to have to watch that. I was riding in low gear trying to work my muscles. I'm gonna have to kick it down a notch until I get used to it. The exercise bike in the corner of the living room just doesn't do it. My cramps have gotten a lot better though since I started taking the new medication.
We are still waiting to hear from Arizona about the adoption records. It has been a couple of weeks now. We are getting anxious. We are hoping that this is a good sign; that maybe the waiting is because they are looking. We haven't really thought of any other options yet and are waiting to see what happens with our last petition to the other court. After that, if there is no news then we will try something else.
Sometimes I wonder what is worse. Waiting to get sick or waiting on news from the court. Or in this case the lack of news.

Saturday, May 23, 2009

The Long Weekend

I was just now thinking about the first time when Lois and I went to visit my transplant clinic. It was May 22nd and it was on a Thursday. It was a year and a day ago. Everything was still so new to us then. I was in the process of switching transplant clinics and we were just getting familiar with the new doctors and transplant coordinator. Lois was asking the doctor a bunch of questions. She had just asked him how many people were on the waiting list in our region. I remember the doctor reaching into the upper left hand pocket of his overcoat and fumbling with a small notebook and a pen and some glasses until he found what he was looking for -- it was a 4 x 8 sheet with dozens of names and numbers on it. I remember thinking how tiny it was. The doctor held it up and you could see everyone's blood type. On one side of the list he had scribbled all of the O's. O positives and negatives. On the other side there were A's and B's and AB's. He was explaining to us how nothing could be certain. People were put on the list and taken off of it all the time. The only thing constant about it was that it was always changing.

Somehow the conversation had changed and we were talking about the doctor rotations and who was on-call that weekend. It was his weekend. The Long Weekend he said. At first I didn't get it until my wife mumbled something. I thought he was talking about working a four-day weekend. But that wasn't exactly what he was saying, either. He was saying that this was The Long Weekend. One of them. And then I understood. This was That weekend. The one where people go away and don't come back. Where the interstate can be a very dangerous place to be. Where inattentive or impaired drivers can change the mortality rate. He was saying that this could be a very busy weekend.

I remember feeling a shiver run down my spine as that realization hit me. For some people a weekend like this could be a good thing. A new lease on life. And for other people it could be devastating. So plainly put, this information had me wiping tears away from my eyes.

Be truly safe everyone.

Tuesday, May 19, 2009

Taking Things in Perspective

This drug may cause drowsiness, dizziness, blurred vision, headaches, itching, running nose, watery eyes, bleeding, diarrhea, muscle pain or cramps, vomiting, restlessness, dry mouth, unusual thirst, unusual tiredness or weakness, or rapid or irregular heartbeat.

Most of us have heard these symptoms being mentioned on T.V. ads for medicines during the evening hours. They are listed as cautions and side effects on pill bottles. Do not take this medication if you have Blah Blah Blah Blah Blah Blah Blah. Ironically though, most people going through liver failure experience all these effects even without taking medication. That is because they are some of the first indicators of liver failure. Even as our doctors prescribe new drugs to help us feel better and treat our illness, we are never entirely rid of any of these symptoms. While one drug may be designed to help us with tiredness, another may be designed to cause diarrhea. No matter what combination of drug therapy our doctors use, we will continue to present with most or all of these symptoms as we wait for a liver transplant.

I have been listed now for almost 9 months. Even though I continue to slide down hill and I wait for my health to deteriorate, I know the drugs I am on are working. The stomach aches I used to have were more frequent, but they have subsided somewhat. That is because I eat better and I have cut back on the sodium. I thank my wife for seeing to that. The night and day reversal has really changed a lot. I am still very tired throughout the day, but I don't stay up until 3 or 4 in the morning anymore. That means the lactulose is working and I'm doing my job by taking it. I've also had to take a little responsibility on my part by making myself go to bed at a normal hour. I used to take a sleeping pill, but now I am on a muscle relaxer that I take for my cramps and it works like a sleeping pill.

My biggest worry was exercise. I didn't feel like I was getting enough. The other day I wore a pedometer to work to see just how active I was during the day. I read the average steps per day run between 5,000 to 10,000 steps. Most people don't even hit 10,000. I hit over 20,500 on a fairly busy day. My slowest days are around 16,500 and 18,000. I have still not had a busy day at work yet. I suspect I can hit around 23,500 to 25,000 steps on a good active day. That made me feel pretty good about the bike I've been ignoring that's sitting in the corner of my living room. I still need to try and work on exercising on my days off. Taking all this into account and the fact that I have my bad days, I think I'm doing pretty good still. But I am definitely moving slower and the muscle mass is slowly wasting. And it is getting harder to take a deep breath.

Feeling healthy physically is one thing, but feeling healthy mentally and spiritually is just as important. It is these last two things that I must never forget. Especially the last.

Tuesday, April 28, 2009

You Can't Have Just One (They Melt in your Stomach, Not in your Mouth)

This is my new regimen. I am now taking the ten small pills in the pill box each day along with the other four horse pills that I can't fit in the box. Plus I get to swig down the stuff in the brown bottle 2 to 3 times once a day. Thankfully I only have to take the shot once a week and I only have 6 more shots left after tonight.
Today I had another endoscopy and they found some minimal bleeding. I talked to the doctor about my ascites and he upped my dosage of the water pills. Before we even start thinking about a paracentesis procedure or the TIPS we are going to stay on the diuretics. He also upped my beta blocker because I have portal hypertension symptoms that can cause more bleeding. The beta blocker worries me just a little because any sudden movements or getting up too fast can actually lay you down real fast. I will just have to keep that in mind when I am rushing to put out any fires. Which I occasionally do. Because sometimes during my day job I have to put on my cloak and pretend I am superman. I'm just saying...
Yesterday I had a contrast CT scan and my Bubble Echo Cardio thingamajig and I am waiting to hear how that went. Plus they ended up taking more labs to check my MELD score. It seems that when they update your transplant status they don't want to use your labs from two weeks ago. They want them fresh from two days ago.
I am really feeling good with this transplant center. Everyone is very nice and helpful and willing to talk about any of the issues I bring up. Or it could be that I am loopy and under the influence of anesthesia and I am just making this up. Either way I win.

Sunday, April 26, 2009

It Dropped Like a Rock

This has been a horrible week. The new meds I am taking are leaving me incredibly tired and I keep waking up with the residue of a terrible hangover and headaches in the morning. On Friday afternoon while at work I wasn't feeling so good so I decided to take a break. I sat down at my computer to do some other work I had and I started feeling extremely tired. My head must have been bouncing up and down like a bobblehead doll as I jerked to stay awake. Finally I decided to move around the plant and go see what everyone else was up to. That was a mistake. As I started moving around I realized what I really needed was to sit down. I suddenly had the chills and I was freezing to death. When I got back to my department I turned on my heater and huddled in front of it for ten minutes. My arms were tingling and they felt like they were going numb. At some point I figured out that none of it was normal and I kept waiting for it to subside. I kept checking for a pulse but I couldn't find one. And then I suddenly got really hungry and started eating my lunch as fast as I could. I was barely catching my breath before I started shoveling something else down.
I have never had something like this happen before so I wasn't sure what was going on. Plus I think I was a little confused during the whole episode. I have a key to the first responder medicine cabinet which is located in my department. Instead of grabbing the electronic Mabis blood pressure cuff and checking my vitals, I only thought about checking my vitals. Instead of calling Kris from upstairs (our first responder), I only thought about calling Kris. I knew better, but I wasn't reacting with my better judgment. Eventually it ended as quickly as it had started. It lasted about 40 minutes. It took me most of the afternoon to bounce back before I felt okay. I called my transplant coordinator later and explained to her what happened and she sounded a little dumbfounded. None of the new drugs I am on should have triggered my circulation to drop like it did. The response was to just keep an eye on it. Another thought was to knock back my beta blocker in dosage. But this is something I am not at all comfortable with since portal hypertension was one of the main reasons I started taking the beta blocker. It was also what landed me in the hospital in the first place.

Saturday, April 18, 2009

Where do we go from here ? ¿ ?

It turns out that because I am an American Indian I may be entitled to help paying for drugs that I will need post-op. Drugs that I will need for the rest of my life. These anti-rejection drugs can be very expensive and cost many thousands of dollars a year. Our insurance won't pay for them.
When Lois and I got married we compared our work insurance benefits and discovered hers were definitely a lot better than mine. I have been on her plan ever since. When we discovered that I was going to need to have a transplant we were happy to find that her plan would actually cover the operation. We also learned that some of the drugs I would need for aftercare would also be covered, but not all of them. Some of them are going to end up costing us a lot.
The other day I got a phone call from the transplant center informing us about our insurance benefits and what they would cover. A drug called Prograf is the biggy. Prograf is designed to lower the body's immune system. While your immune system is there to fight infection, it will also fight against a new transplanted organ such as a kidney or liver because it thinks the body is being invaded. Prograf, along with other drugs, are used to help fight against organ transplant rejection. Apparently I need to find a way to pay for this immunosuppression drug before I can get a transplant. Or else ¿ ? ¿

The transplant center is doing its best and willing to do what it takes to help us out in exploring all our options. But now we have reached an impass. The idea to look into Indian benefits was actually the social worker's thought. A good one. Buuttt... I was adopted and I have no ties with my Indian tribe. I know that I am a Yaqui Indian because my parents said so. They adopted three of us -- two Yaquis and a Pima while they lived in Phoenix. But my case is no different than any other adoptee's. When the adoption is finalized, they reissue a birth certificate that shows the adoptive parents as the natural parents. There's nothing on it that says, adopted.
So I must first somehow prove that I was adopted and then find a way to have my adoption records opened so that I can prove it to the tribal council. And then I might be eligible for Indian funds.Years ago I did a little research on trying to find my natural parents. I wrote a letter to ALMA Society (Adoptee's Liberty Movement Association) and they responded by telling me there might be a loophole in finding my parents because I was Native American.

Adoptees who are of American Indian heritage can learn their original names and names of their birth parents by taking advantage of the Indian Child Welfare Act of 1977.

This law was made for a number of reasons, but the one that is of most importance to me is that my records can supposedly be opened due to genetic and medical reasons. It is a federal law. In my case I am not so much interested in finding my natural parents but rather looking for medical history and acknowledgement from the tribe so that I can apply for grant money so I can show that we can get the Prograf. Without that, there will be no transplant.
Anybody know any adoption law? We're stumped.

Thursday, April 16, 2009

Sniff, sniff

I went to see my regular doctor today and he had my new lab results in. I wanted so much to ask him to call up the UNOS website so that we could plug in my new numbers to find out what my new MELD score was but, because I had already dropped in without making an appointment I thought that might be rude of me. He had asked me the other day to come back in a couple of days, but I had no idea that I was supposed to re-schedule. I don't think he seemed to mind, but the nurses station didn't seem to be too happy.
We discussed the breathing problems I have been having and the new medication he prescribed. The good news was that I have no fluid in my lungs. We pretty much determined this on Monday when I went in to see him. But the one thing that my chest x-rays showed was that there was some back pressure creating some blockage. This is probably what has been causing me all my problems. The new meds are diuretics that should help me out. I know they are working.
We left and dropped off yet another prescription at the drug store for some potassium and then went home. I ran to my computer and booted it up while I waited patiently impatiently for it to come online. I called up the UNOS site and plugged in my new numbers and my MELD had dropped a number. I was kind of disappointed to say the least. I had actually thought if it had changed it would of at least gone the other way. I guess this is a good thing and I should look at it with the opportunity to get more things in our lives situated before things do start moving in the other direction. I still have more test at the end of the month and my transplant coordinator threw in another one. It's a bubble echo heart thingamajig.
That is all.

Tuesday, April 7, 2009

When it Rains it Pours

Well it looks like April is going to be a very busy month for our household. Today I went to see an eye specialist because my eyes are always watering. It turns out my tear ducts are both messed up. One of them had to be routered out because it had grown closed for whatever reason and the other one was evidently severed a long time ago. It was still draining so they decided to leave it alone. I had a needle jabbed in my eyelid so that they could numb it, and then to make it worse I had to sit there and watch the doctor poke around my eye because I obviously couldn't shut them while the doctor did his job. Well, I guess I could have shut one eye but that wouldn't have helped me. I go back in two weeks. Later this month I am having another CT scan and then I am having another endoscopy. The last endoscopy really hurt. As soon as they started the IV line it burned like crazy. Oh what fun. I am going to try and see if I can talk my transplant coordinator into letting me get my blood work done too. I also have another blood lab I need get done this coming week and I have to get in to see the dentist.
Lately I have noticed new things are beginning to happen. I am having a difficult time with shortness of breath. I think I have fluid in my lungs. I will have to see my primary doctor about this. Whenever I over exert myself my chest feels oddly different and sometimes when I'm talking I can't finish my sentences because I run out of breath. My cramps still come and go but I found that if I slip one of those elastic knee braces over my calves at night I don't get any cramps. This seems to work. Life is good.
Oh yeah, and next week my wife is having sinus reconstruction surgery with follow ups for the next six weeks. Thank heaven for insurance.

Tuesday, March 24, 2009

A receptionist from my transplant center called me last week so that they could schedule a re-evaluation with my social worker and have me visit with a dietitian. It was basically a formality that needs to be done every 6 months. Not wanting to put it off and feeling somewhat anxious I asked her if we could do it the next day. That was last Tuesday.

When we went in for my appointment I weighed in at 172 lbs. I wanted to cry. I've gained 18 pounds since my last visit a month ago. A sure sign of ascites. Now I know why my legs hurt so much. They can't take my weight. I have been limping around for the past two weeks because my left knee keeps going out on me and it hurts to walk. And I am slowly losing my muscle mass. The thought that I have ascites is frightening. (Ascites is the build-up of fluid in the stomach and it can cause a lot of discomfort. The fluid can push against the abdominal walls and can lead to heavy pressure in the stomach causing shortness of breath, bloating and flatulence. It can also be the cause of nausea and vomiting, halitosis and heartburn. These are just a few symptoms.) Of all the signs and symptoms of this disease; this has been the one I am struggling with the most.
When I was done with my visit my transplant coordinator came in to see me. I think she realized that I was discouraged and she mentioned my MELD score was still at 11. She said that for right now I only needed labs every three months, but if I wanted to come in earlier than May then I could. This cheered me up because I appear to be one of those people who doesn't seem to get sick on paper. I had actually hoped to see some changes in my last labs, but nothing has changed. The number stays the same.

I suppose this is a good thing, because we still have to get the house in order. I'm actually out shopping bathroom hand rails when we go to the stores because I seriously need them --NOW.

(I kind of like the antique chrome)

(It's a little nicer than the silver and gold chrome)

(But this bar, although sporting a plainly look, seems to speak out to me.

It has the I've fallen and now I can get back up look.)

Any how, on our way home from the hospital my wife painted me a picture. She wants to move the girls downstairs into different rooms and turn one of the upstairs rooms into a computer/lounge/recuperating room for me when I get out of the hospital. We would make a spare bedroom out of the other room. It is a good plan, but it is a lot of work. I don't know how we are going to pull it off. We are talking about moving four rooms between three different floors. Time and strength is our enemy. We don't have a lot of it. I get short winded real fast and my body is weak. I don't dare push myself or I could start up another bleed.
But there is more to the picture. Lois is just as exhausted as I am. Perhaps more so. She is running the whole household by herself and I know it is difficult on her. We enlist the help of the girls but it is often trying. I try to do what I can but it isn't much. Today I am doing laundry and I am going to try to mount some new curtain fixtures in Alys room.

Physically I am starting to get a lot of cramps in my legs and when I get short of breath I can feel fluid in my lungs. I don't know what that's about yet. In the long run I am holding up okay, considering the circumstances. My spirit wavers from time to time but I can't imagine not being touched by this. It's a pretty big deal.

In closing I am thinking about all the people I have met recently who are ill or recuperating. I pray you all good health. I pray for your families as well. The emotional and physical toll on everyone involved is enormous -- for the wives, and the husbands and the children. Sometimes I forget that the emotional, financial and physical stress can be so taxing -- on everybody.

Thursday, March 12, 2009

One Year Now

(My wife reminded me the other day that it has been one year since I was hospitalized and we found out that I had liver disease. I didn't have anything ready to post but I thought I should at least write something)

It has been one year ago yesterday. One year since my life abruptly changed.
My life.
My wife's.
My children's.
Our whole family.

In life there are some things you can't take back. Things you cannot change.
This is one of them.

"You have varices."
It still echoes in my head.
A lot has happened since then.
The disease has morphed and changed.
I have changed. Both mentally and physically.
It seems like a bad dream at times.
Like a horrible nightmare.
Like nothing will ever
Be the same.

It has been one year now.
Things do change.
I have changed.