One of Those Days

It has been a heavy week and it is only Wednesday.
On Monday I found out that my new labs for my MELD score in December were never updated with UNOS (United Network for Organ Sharing). That disheartened me and caused me some grief for a couple of days while I processed it.
Today I learned that a good friends wife has cancer. I have trouble with that one. I lost both of my parents to cancer.
Five minutes later I was told that one of my best friends has colon cancer. This I didn't take so well and had to find a place to shed some tears. Sometimes I just don't get it, and I wonder why things happen the way they do.
And then, on the horizon, I am thinking about Lois' endoscopy coming up real soon and the worry gnaws at me.
Too much. Too damn much to think about.
So...my score dropped because of an error. My friends are faced with sad and disturbing news that may most likely be life altering and worry is scratching on the inside of my skull that keeps me up at night. Never mind all the other stuff. The stuff that has already become part of the scenery. The kids not doing anything to help out because...they are kids. The freezer going out for the second time in a row and losing all the frozen groceries because I can't figure out what's causing the GFI to trip. Never mind the mountain of insane that keeps happening. Too much. Too damn much to think about.
I say a prayer for this and prayer for that, and in between I offer a kiss or a hug for comfort. It is heavier today, but I still manage to laugh and smile about the other things there in life. The things that are funny. The fact that my oldest dresses like Helena Bonham Carter. Or that the animals in my house always make me smile. And I realize that these things are not too much; they are not enough.

Just Breathe

I woke up early in the morning. An hour has passed by now; it is 3:30 in the morning. Something is bothering me and I can't sleep. I finally make my way out of bed and move downstairs. It seems exceptionally bright. The storm has moved in and the snow has covered the back yard. The wind blows flakes left and right and up. The only thing I don't see is the snow coming down.
My wife has been feeling painfully miserable. I've told her over and over again to go to the doctor. "I can't. I will. No time. Next week. I'll see." The words come out in different ways. I tell her, "You have to stop. Your going to get sicker."
She calls me and says, "I've made an appointment."
Finally. Hopefully. Maybe. She'll get better.
She comes home from the doctor and say's, "My allergies are killing me. The doctors said that my (insert names here) levels are through the roof. They are 1,400. Way too High. Stress levels that can cause heart attacks. He gave me pills."
I whimper inside. I've know that the stress levels have been way too high. I've told her that she needs to try and relax and quit taking things so serious.
"What like illness? And money? And death?"
"Yes, like all those things. Just breathe."
"Can't breathe. It's choking the life out of me."
I am happy about the doctor appointment.
Finally. Hopefully. Maybe. Things will change.
One of the first things I learned as a person with a chronic illness was that it is just as hard on the caregivers. We've gone to parent/teacher conference meetings and said, "Here's our story. Please watch our kids. Let us know if you see any changes."
I think it is different with a spouse. You can't stop the worry and the stress. It is part of the normal reaction.
I am praying that this gets better. I know that the allergens have long since been aggravating. We've been working on them. But I know that we are not saying goodbye to the dogs and the cats and the guinea pigs and the hamsters and those other tiny rodents any time soon. All we can do is minimize the damage and work on the stress. Just breathe.

I love you, Lo.

The Paradox

I had my labs drawn yesterday prior to my three month doctor appointment. My score went back up 4 points and my MELD is now 23. The doctor told me that I was getting pretty sick. He also said that while my score was still somewhat low, I could still be transplanted at any time. Oddly enough, I feel a little apathetic. Somewhere along the line I seemed to have crossed a threshold that's changed my outlook on things. For over two years now I have waited for this, thinking what a joyous moment it would be when it finally happened. Now all I seem to be able to think about is that someone is going to die.
I know that none of this has anything to do with me, but the thought of it has me shaken. It is in my sleep. Knowing that someone must die so that I may live weighs heavy on me. Up until recently when my numbers were still low, I had not given it much thought. Everything was still so far away. I had no time to think about what happens next, everything was about today and this moment. I was focused on how I felt and the changes I went through each day. But now that I am closer things have changed. My focus rests on everyone involved and all that comes with it. It is hard for me to look forward to something while knowing what fate will bring to another family. I was never blinded by it; it just seemed so far away. I've always known that time would not change it. It is a paradox.

Happy Thanksgiving.

Recently my words have been few and far between. Over the past couple of weeks I have been feeling quite ill and it was all I could do to get through the day, but I am feeling much better these days and I want to thank everyone who continues to leave comments and send emails. It amazes me how such a simple act of kindness can help brighten my day.
These past couple of years have been tough and chaotic and I am often moved by the spirit of gestures handed our way. It is hard to put into words what only tears can describe.
This year I have a lot to be thankful for. The presence of each day, my family and friends. Each moment in time is significantly different, and yet somehow connected to the bigger picture. I have had a lot to reflect on, and while it has been hard we seem to roll with the punches. I have kind of adopted the attitude of not taking things too serious.
I would like to take the time to apologize to all those I still owe an email. I'm not ignoring you. Sometimes some days are just difficult and hopefully I will get a chance to respond to everyone before too long.
I hope everyone has a wonderful holiday and a lovely Thanksgiving, and that you all enjoy time with your friends and your family.
 

~beaux

Deep Breaths

My MELD dropped one more point. I feel guilty for being frustrated. Perhaps it is time I learned about patience.

Nothing Much Happened Today

There's not a lot going on. I seem to be really tired all the time. Every day this past week I have slept more than usual. One day I slept for almost 13 hours, plus I still took cat naps after I woke up. I have also had stomach aches in the mornings that usually last for a while. Sometimes all day. I am really getting tired of that.
I don't know if I mentioned it, but my coordinator called me after I got my last results and said that even though I dropped 3 points on my score last time, I am still somewhere at the top of the list. I take that to be good news. I will get new labs on Nov 10, when they have me come in again. I am worried about my score dropping though, it makes me nervous.
(taps fingers...)
I did manage to get my bathroom all sparkling clean and disinfected the way I wanted it. It makes me smile. I don't even want to go in there anymore. And I keep trying to stay current on house projects we have going on. Nothing big.

Today I have been on the waiting list for two years and two months.
Well, that is all.

Sick and Tired

So, pretty much every fiber in my body hurts these days. Ever since I took the beating from the hardwood floor, I have slowly slipped backwards. My muscles ache and my calves seem to be wrestling with edema. On top of this, I've been fighting a cold which I finally gave into yesterday. Every time I blow my nose I get a pounding headache and there is blood from the damn coumadin I am taking. Not just the watery kind that I sometimes get, but the very thick gloppy blood. It is bright red.
Lois and I worked on the molding yesterday and I probably have a couple hours left today, thank goodness. It should actually go pretty fast now that I have the bay window out of the way. The living room will look really nice when we're finished.

In other news, my MELD score changed considerably. I went in Friday morning and had my standard order taken. Around 4:30 that afternoon I decided I couldn't make it through the weekend without knowing my score. I was able to call the lab and one of the techs looked up my name and asked me what I wanted to know. I told him I needed my bilirubin, my INR and my serum creatine. After that I called Lois and had her get on my blog and call up the MELD/PELD calculator. As Lois typed in the empty fields, I already had a feeling that my score had dropped just by reading the numbers.
"Your MELD is 20." She said.
I'm sure my silence spoke for itself and that she would have wrapped her arms around me and gave me a big hug if she had been there. 

Later on Lois told me, "It will be all right. It just means somebody else needs a liver a lot more than you do right now." 

This perspective was all that I needed, even though it was hard to think about a 3 point drop. I was happy to see that my creatine level was still in normal range. The one thing that I pay close attention to is how my kidney functions are taking this assault.
The next thing I had going through my head was how far I had dropped. Did I fall out of the range I was now in?
No. I was still in the same range. 19 through 24.
"That's a good thing." I told myself.
While all of this was a little disheartening, it made me realize that the score can change at any time. It will bounce around and you will never be certain of anything until the final moment. It also made me realize that the weakness to my body has gained momentum; what once was is clearly a thing of the past. I am physically exhausted. It is certain that things will change again over the next four weeks.

Tick-Tock

I had my labs drawn on Monday and received my new MELD score today. I have moved up from a score of 21 to 23. Although this seems like a slight jump, it is actually pretty significant. This has put me in that obscure range where anything can happen. I am now with that handful of people who wait and bide their time. I am suddenly thinking in terms that I need to pack a bag to throw in the car. I am thinking that I should clean my bathroom from top to bottom and disinfect it. Maybe I should sterilize my house? I wonder how far from home I can actually venture? I have a two hour river rafting trip on Saturday and I'm half afraid to go. 

For two years I have waited for this moment and now I'm just confused. Tick-Tock.

New MELD Score

I had new labs drawn on Monday. Ever since my MELD score went up three months ago I have anxiously been waiting for my next doctor appointment. For three months I have been walking around on pins and needles waiting for this appointment. Actually it isn't so much about the doctor visit as it is having my MELD score checked again. I usually have my labs sent to me by mail and I use the UNOS MELD calculator to check my new labs so as not to bother my coordinator. If I don't, then I am on the phone 3 days later and I quickly become a nuisance until I track down someone who can help me.
Anyhow, I just received my labs in the mail and I am now at 21. I definitely am moving up the ladder.
Here is the MELD range:

Lab Test Frequency

    * MELD score greater than or equal to 25; Labs needed every 7 days

      * MELD score 24-19; Labs needed every 30 days

      * MELD score 18-11; Labs needed every 90 days

      * MELD score less than or equal to 10; Labs needed every year

Meanwhile I am very tired. I find myself falling asleep more often during my days off. I have also noticed that I am running out of breath a lot faster than I used to. I think I am just physically weak.
Posting has also been hard to do. I don't seem to have it in me anymore. I have been trying to keep the photo journal going though, but I haven't had anything to post for the past couple of days because I've been sleeping. It's kind of hard to take pictures with your head buried in a pillow.
So there it is. Good news depending on how you look at it. I am happy about it.

Lately I have been following some blogs in the liver community of some people who are not doing as well as I am. They are a lot sicker than I am and I count my blessings that I am doing so well. I hope these people don't have to wait much longer and that they all receive their transplants soon. My thoughts and prayers go out to each of them.

Update

It seems as though it wasn't very long ago when I lay curled up on my bed writhing in pain. Somehow I managed to endure the agony while eluding death; never knowing how sick I really was. And then a visit to one of my doctors revealed that something else was wrong, and I was admitted to the hospital late one evening. In the morning during a routine EGD I would have a bleed out. Not long after this my family and I discovered that I was terminally ill. Compounded -- all these things and more started to weigh in and our lives began to change. We were in unfamiliar territory. That was more than two years ago.
This week I am re-living some of the past not because I am nearing a two year mark on the waiting list, but because some of the old pain is slowly creeping back. Moments of sharp stomach cramps and nausea occasionally give me spasms, and that relentless battle with sleep has returned. I am exhausted all the time. There are also newer symptoms that I didn't have back then. I am stiff and sore from muscle degeneration. My strength is more mental these days. Even here that is not my biggest strength. I am losing focus in simple conversations. I will be talking to Lois about something and I will lose my train of thought. I find myself reaching for other words to draw me back.
Despite all of this I remain wary. I take my medicine and try my best to keep strong. The words, "I am dying." or "You are dying." They seem to be spoken more often. Once, when this was all new, the words seldom came up. Now they are descriptive. Defining. They hold context. Something I never really thought about. And yet the thoughts have always been there.
The one thing that has always remained a constant is, "You have two to two and half years before transplant."
As that window narrows and my body gets sicker, I become more and more aware of this. Aware that the clock keeps ticking. There are no hands keeping track of time. There is no faceplate to look at. There is only an invisible clock measuring anxiety and frustration and the onset of new symptoms.

I Have a Hole in My Side

I had an appointment today with my dermatologist. The enbrel seems to be working like it's supposed to. I also had a large lump on my side that I've been waiting to get checked. In the past two weeks it about doubled or tripled in size and has been hurting like hell. It turned out to be a big cyst. I figured the doctor would probably drain it and maybe send a piece of it away to be checked. That is exactly what he did. Now I have to wait until next week until I hear something. I hate waiting. He seemed pretty confident that there wasn't anything unusual about it, but he wanted to be sure.

There isn't much else happening. I don't have my next transplant appointment or labs for another month. I am starting to get anxious about that.

I have had a lot of bloody noses happening lately. The good thing is that they don't last. And I am having a lot of bathroom issues which tend to give me stomach aches. That is the downfall of taking so many diuretics. Plus I am still having trouble with losing my breath and my voice. It doesn't take much for me to get winded.

Some days I feel like I'm spiraling and I feel like I am getting worse. I just need to remind myself that I need to be patient and continue to wait. I just wish I didn't have this big hole in my side while I do it.

Dear Abby...

We have dogs and cats and guinea pigs and birds. Lately I have heard stories that after transplant some of these animals could be harmful to my health because of my immune system. This is alarming because I actually love some of these guys and spend a fair amount of time holding and petting them. Some rumors are that I might just have to get rid of them. Does anyone know if this is true?

                

                                                       Signed, Help!

Ragnar Relay Wasatch Back 2010: The Way I Remember It.

Have you ever had the perfect day? I haven't had one of those for a while. Usually I get halfway through the day and I start feeling tired. I wrestle with sore muscles and body cramps. Mostly it is all internal digestive stuff and I have to focus on holding all the pieces of my body together so it doesn't come apart.

Today I started out with a stomach ache and I thought I was going to roll myself into a ball and cry. I kept telling myself, "Not today, not today." After a bran muffin I started feeling better. Things got much better.
We drove up to Park City to the Canyon Ski Resort to meet the team, "Dude, Where's My Van?" What should have been a twenty-five minute ride turned into an hour or so. With 13,000 relay racers on the hill and who knows how many spectators and friends cheering them on, the place was packed. We wandered around the resort while we waited for the team to get there so we could cheer them across the finish line. When we first got there organizers had everyone park at the bottom of the hill and take the tram up the mountain. My discomforts had long since passed and being outdoors in the clean fresh air riding over the grassy terrain was awesome. Looking at the cars parked below us gave me an idea of how many people were waiting up above. I was feeling anxious, knowing that when the team came in I would join them for the last part of the race as we all ran in together to cross the finish line.
We had been waiting for the better part of an hour when the team finally showed up. Sadly some of them had to leave earlier and there were only six of them. Amy D. informed us that the last runner that we were waiting for was her sister, Dani. Twenty minutes later Dani came around the corner and we all gathered on the sidelines so that we could join her.
A couple of days ago I didn't know anything about this race. But I was learning. I had read the history of how the race was conceived and got started and how those men who had put it together had turned it into the biggest relay race in the world. I had learned about the man called Ragnar and who and what he represented. The attributes of his character were now a part of all these racers. Endurance and strength. A conqueror and explorer. A free spirit and wild man. And although I didn't run this race, for a moment I was going to step in line with those who did. It was invigorating and humbling.
As Dani approached I hooted and hollered. She asked Amy, "Is this Beaux?"

Winded and tired, she ran next to me and said, "I just kept saying your name!"

Today was a perfect day. And see that medal around my neck? That belongs to Amy.

Amy and me.

Dude, Where's My Van?

It takes very little to take my breath away. The simple act of leaning over to tie my shoes is enough to keep me panting for a good minute or so. I used to climb the stairs at work and in my house two steps at a time. It has been several months now since I stopped doing that. There are other things I used to do that are just too laborious for my body. I quit riding my bike last year when the first snow fell. I just didn't know it yet. Twice this year I pumped up the tires on my bike and I had to sit down before I could get on it to ride a block to the store. I miss the active me.

Last night:

"Oh yeah, I forgot to tell you, " Lois said. "Amy D. is running a race this weekend. They are running from Logan, Utah, to Park City. Every year they run for someone. This year they are running for you."

"What?"

"They are running in your honor, and to raise awareness for organ donation."

I thought about this and it made me gulp. I even had the start of tears forming in my eye. And for a moment I am back in my garage pumping up my tires and I feel like I'm finally going for a ride. "This sounds way cool,"  I am thinking to myself.

"That sounds way cool," I say out loud.

"Their team is all having a barbecue tomorrow and they would like it if we could stop by."

Tonight:

I feel a little shy and apprehensive as we enter the house. The team is laughing and joking and it sounds like they are all having fun. Amy introduces our family to the the team members that are there and we sit down and have burgers. I am unfamiliar with the race and I ask Amy how long it is.

"It's 188 miles."

"Oh my gosh!" I say.

"Yeah, it's a long ways," Amy laughs.

The run is called the Ragnar Relay's Wasatch Back and their team is called, 'Dude, Where's My Van?' Amy has been running this race from the very beginning. This is its seventh year. The team consists of 12 people and there are 3 legs. Each runner does a particular leg and then another team member takes over. They do this three times. This year there are 13,000 participants.

As Lois and I asked how they all got together and started doing this, they began reminiscing about their past events and told us stories that had us rolling on the floor. The apprehension that I had earlier was long forgotten. This group of people -- this team -- had left me smiling.

I am moved by the kindness that these strangers have extended. They are running because they love it. But that I am to be part of it has me running along beside them.

Also visit this link:

http://www.deseretnews.com/blog/68/10009307/Reasons-to-Run-Dude-Were-running-for-Beaux-and-organ-donation.html

Happiness is...

I have been getting a lot of muscle cramps in my legs lately. The cramps generally hit my calves in my legs and they hurt like hell, sometimes causing me to cramp up in my hands or feet when I start tightening up. Our little trek to Tanner park the other day really made me sore and I cramped up the following day while I was watching a movie at the theater.
I usually end up screaming out in pain, but because I was in the theater I had to endure it while my body slowly did its contortionist thing and made me look all weird and scary. I'm sure the people sitting up in the rows above me were quite amused by all the body movement I was doing. They were probably thinking: "Okay, that guy is just creepy. Honey, I think we should move."
I had been taking a muscle relaxer that the doctors gave me, but they had me stop taking it because they didn't want me feeling so tired and they wanted me to stay more clear headed. But the problem with discontinuing the drug only made things worse when the cramps returned. Eventually after a couple of months I asked the doctors if there was something else I could take and they told me I could go back on the muscle relaxer. That was good, except I just started back on the pills and they haven't really done a lot to help yet. I have been limping since our park excursion and the theater fiasco.
Yesterday we went to Thanksgiving Point to see the flower gardens and as we started out Lois joking asked if I wanted a wheel chair they had for rent. I told her, "Yes!" But the truth was I was joking and I wouldn't have used one anyway. Not yet, anyways. We also noticed that they had Segways and golf carts for rent and decided that we didn't want to walk through three miles of trails when they had golf carts available. That was the coolest thing we could have done.
We started out with Lois driving and a half a mile later Aly was just dying to drive the cart. Naturally we had to let her drive for a while. I think she kind of got spooked and then I took over. We did this for about two or three hours and drove all the trails and took lots and lots of pictures. The place was beautiful and we had never been there before. We visited the dinosaur museum years ago when they first opened the place but, we had not been back since.
I don't have much else to share. I don't go back to the doctor until August and I will have my MELD score checked again sometime before my appointment. I am still getting awfully tired and there are noticeable changes that I see on a daily basis. I do my best to deal with them and that is about all I can do. Right now my focus is just to stay healthy and spend time with my family. There is a certain love and bliss that comes with all that. Falling in love all over again. Having children again. Every moment seems new to me sometimes. I suppose it is like holding on to not letting go. I am happy.

Nine

For two years now I have been slowly getting sick. In those earlier days before they started bombarding me with medicine, I would get awfully sick. Sometimes I would curl up on my bed in a ball and cry out in pain. I had no idea what was happening to me. The pain would come and go and I just assumed I was sick. As it turned out I was sick. Very sick.

Lately I have felt a small change. Yesterday I woke up nauseated, thinking I was going to be ill. That is a symptom I haven't had for a very long time. I have also been very tired lately. That symptom is nothing new. I have been tired all along. But this has been a new kind of tired. It carries a different weight to it and it has been relentless.

I had new labs drawn on Monday. We are still checking my INR for the coumadin. This week we also checked my MELD score. The last time we checked it -- three months ago -- my score was 11. My new coordinator decided that we would wait until January before we checked it again, but then Lois talked to her about how often it changed and my coordinator agreed to let me get it checked again. Today she called to tell me that the coumadin is looking good and that my MELD had risen considerably. It was 18.

As I thought about the number, knowing that 23 to 25 can be a good average range for a transplant in this region, my heart started doing pitter-patters. And then my coordinator said something that I could barely comprehend. "Your placement on the list puts you at number nine, or thereabouts."

I understood what she meant by "thereabouts" because thereabouts implies all the factors involved in a MELD score. It is the derivative of every other person involved. It is weight and size, it is a score of someone who is at 40 and someone who is at 20. It is everything that happens between now and then. Illness. Infection. Death and dying. The list goes on.

Listening to my coordinator I suddenly realized that I was crying. Time seemed to be catching up. My thought was, "I am closer. This is happening."

I found Lois and told her everything.

Hugging each other, Lois asked, "Does this make it seem more real now?"

With my heart breaking, I could only nod yes.

Plus ca change, plus ce le meme chose

A lot has been happening and yet nothing at all.
Last week I celebrated 2 years of not smoking. I have also been on the waiting list for 20 months. It's hard to believe so much time has passed by.
I started taking Enbrel again and I wouldn't let Lois give me a shot for 2 days because I'm a big baby and I hate needles. Now that we've picked a day I have to do it every Thursday. I'm sure that once the psoriasis starts getting better I'll be happy about it. In the meantime, I will probably whine for the next several months. The last time I was on it, I steadily got worse from week to week and dreaded being stuck. I would almost cry every time Lois gave me an injection.
(Taps fingers)
My coumadin labs were all berserk and I am getting labs drawn once a week as they adjust the dosage. I've had a few bloody noses, so something is happening. One day I had a bruise on my hand about the size of a nickel and then it disappeared a couple of days later. I wonder what it does if you have already had varices? My last endoscopy showed varices in the stomach. That kind of makes me nervous.
My muscle cramps have returned. I wondered what would happen when they took the medicine away that was helping. It really is a bummer. They usually come when I stretch and it can be a rude awakening while lying in bed.
The sky, however, was fabulous tonight. And the cat with the really good fur is letting me rub my bare feet on him, so life could be worse.

Whatever Happened with that Interferon/Ribavirin Treatment?

I went to see the doctor today for my clinic appointment and we talked about me doing the interferon/ribavirin treatment for the HCV. The doctor decided that it would be in my best interest to pursue treatment after transplant. In the meanwhile I was urged to work on treating my psoriasis which has really started to get out of hand. I am generally feeling miserable with it right now. Plus, the doctor decided to put me on coumadin because of the blood clot they found this past January in my portal vein. I will do the coumadin for a month and then I suppose they'll do another CT scan. Most of this is good news and I will benefit from it in the long run. The only thing I don't like is that once I go back to see my dermatologist, I will most likely go back on Embrel and I hate the injections. But I guess that's a small price to pay if it will bring me some comfort and get rid of the psoriasis again.

I have also been having some hearing issue problems that we are looking at. I keep getting a ringing in my ears and sometimes things sound muffled and then come back on. Kind of like the elevation thing when you have to yawn to correct it. Anyhow, we cut back the dosage of the neomycin I have been on and we will watch it. The last thing I want to do is lose my hearing because of all the meds I am on.

Well, not much more to add to this.

Zombie

I wonder if George A. Romero knew someone who was sick when he directed Night of the Living Dead?

My wife was looking at me the other day and she said, "Your eyes are starting to turn yellow." 
I don't see it, but evidently she does. And having dark skin makes it kind of hard to tell if I am getting jaundice. I suppose it probably leaves me looking a little discolored. I have dark rings under my eyes, the result of leaky capillaries. Gravity causes the blood to fall downward and deposits below my eyes making me look tired and sick. They say 8 hours of sleep will fix this but, it is hard when sleeping is a difficult thing to do with this disease. I also have this whole blood clotting factor going on and a simple bump will bruise me. These things combined with my psoriasis have me looking pretty scary these days. I look bruised with lesions peppered across my body from the psoriasis and the scratching and I feel a little self conscious about it at times. Not always; just sometimes. I realize I am sick and there isn't much I can do about the way I look. I didn't realize I was being so vain until I read another blogger's post earlier today.

Today I was reminded that it has been two years since I was diagnosed with liver disease. I was told back then that I had 18 months before I might see another bleed out from varices. My last endoscopy showed that I have stopped bleeding in my esophagus and that the varices has moved to my stomach. I guess all the medicine I am taking is working. The doctors don't seem to be worried about what's happening in my stomach, and I suppose unless I start leaking a lot of blood then I am somewhat safe. In the meantime I remain wary.

I still find this all hard to talk about at times when I think of everything involved. The Call. Another person dying. My family. Myself.

Lois asked me the other day, "Are you getting scared?"

I said, "I don't know?"

It all seems unreal. I don't think I'll know until I get real sick.

Update

Not much is happening. Ever since my med's got changed I have been doing better. The cramps are still noticeable, but they have subsided somewhat. I feel good in general though, if you don't count all the bathroom trips and the getting tired. Even the tiredness is a little better. It usually catches up to me over the weekend.

The one thing that hasn't changed is my breathing. It takes very little to lose my breath. I walked about a block the other day and I was huffing and puffing. I still don't understand what is causing this and I don't understand why I keep losing my voice while I'm talking. It frustrates me that my doctors don't know why. It seems like at least one of the doctors would be familiar with such a symptom as this. Maybe it's time I see my family doctor and see what he has to say.

I am also going to start back on the pegylated interferon and ribavirin program that I did a few years ago. I am kind of anxious and nervous, but mostly I would just like to get started on it. The doctors are working on new protocols for the Hep-C treatment and then they will schedule an appointment for me.

That is all.

Down for the Count

On Friday I had been at work for no more than an hour when I suddenly realized that I had a cold. I looked at the clock and noted the date and time because I'm sure that this will play an intricate roll in my being sick as a dog. For instance, three weeks from now I can look back and say: "I've been sick for three weeks." Or it might be that in 5 days the cold will disappear and I will say to myself, "That was the shortest cold ever." In any regard, it is intricate. At least that is what my OCD was telling me at the time.

Anyhow, I waited for 9 a.m. to roll around so I could cancel my Monday dentist appointment, because that would have just been rude showing up all snotty and sneezing and blech. All though I'm pretty sure I would have called and canceled Monday anyways, on the account I feel like crap. Plus we had a dinner engagement for tonight that I was looking forward to and we had to push that back.

This morning I woke up and my head feels like it wants to explode. I can push on my eyelids and feel a squishy feeling behind them. Mucus. A hot wash cloth seems to help with that, but I'm not going to stand in the bathroom applying warm compresses over my eyes every 30 seconds for an hour if all I'm doing is getting wet. Maybe I'll just rub on some more Vicks and go back to bed. After I have some mojo Theraflu.

I can't remember the last time I had a cold that felt this bad. But I do remember making a mental note of it because I thought it might be important.

65 Red Roses

Over the past several months I have taken a personal interest in organ donation. I am not talking about pounding the pavement and meeting and greeting people who will get the wheels rolling, but more of self-interest because I think organ donation is important worldwide. I will write a post every so often that reflects this, or I will post a banner on my sidebar to remind people they can sign up if they haven't already. I actually do very little when it comes to donor awareness, but I still try to get the message out there whenever I can.
A few months ago after I started having breathing issues, I found myself exploring the internet looking for answers as to why I had trouble breathing and losing my voice when I talked. Unfortunately I didn't find out anything, but I discovered some sites that had to do with Cystic Fibrosis. I soon discovered one site called
65 Red Roses and I watched a video about a young girl -- 25 year old Canadian Eva Markvoort -- who's been struggling with this awful disease all of her life. Despite all of her hardships, she continually maintains a beautiful, kind and spirited sense of self that is uplifting for all who meet her. She has been a powerful inspiration to me and for many others.
In 2007, the idea for a documentary about Eva's life and the journey she's been on was just in the making. Eva had been told by doctors that she probably only had a couple of years left before she would need a transplant. The clock was ticking.
On Monday, Nov. 16, 2009 65_Red Roses, a documentary aired in Canada on the CBC News Network's The Passionate Eye and since then has won several awards. I was sad to miss the premiere but unfortunately it has not yet come to the United States. From what I understand it is waiting for someone who can sponsor the program before it can be brought here for viewing.
The two filmmakers, Philip Lyall and Nimisha Mukerji, had hoped that their documentary would inspire people to sign up to be organ donors. I can only pray that it worked.

The other day I was visiting Eva's LiveJournal website and there was a video post titled "I love you all". I was on a computer that didn't have a media player hooked up on it so I couldn't watch the video. Looking at the comment section I noticed that there were over 900 comments on her post. I took a short breath and let it out with a prayer. Something was happening; her page had gone viral.
I was wondering if this was it. Was she getting another transplant? I read a few comments and as usual they offered her comfort and prayers. But they did not seem like the kind of comments you would get before going into a transplant. They seemed sad and I could only surmise that something was wrong.
A few hours later when I got home I turned on my computer and I learned that Eva's health had changed for the worst. She has been sick for some time now where she has been facing chronic rejection and has been staying at Vancouver General Hospital in Vancouver, British Columbia, Canada. The province has the lowest donor rate in that country.

On February 11, Eva posted a goodbye video telling all her friends that she didn't have very long to live. Her mom and dad and sister are gathered around her thanking everyone for all their support. They are biding time. Sharing memories. Hanging out with close friends and family.
I quietly cry and once again find myself praying for a miracle. It is very hard for me to comprehend this. The situation is hard to fathom; someone must die so another can live. Everything must be perfect. As if a double lung transplant wasn't already enough.

There isn't a lot that I can do. But while I keep a journal documenting my own transplant experience, I can occasionally remind people that there is something they can do. Consider being a donor. Consider what you might have to offer. Consider the fact that you might save someone from dying and that you might bring some family the gift of life and happiness.

Eva, you are in my prayers...


(On a side note, I'd like to say that there are literally tens of thousands of people worldwide who have Cystic Fibrosis. And while this post was written with Eva in mind, and it was meant to drum home the necessity of organ donating, I in no means wish to take away from all those who live and suffer from CF on a daily basis. There are approximately 1,000 new cases of CF diagnosed each year.
Each year thousands of people are waiting for vital organs and tissues so that they might have a fighting chance at life.)

Why I Haven't Been Writing...

1. Angry
2. Confused
3. Got the saddies
4. Tired

All of the above.

  These past few days have been hard for me. I've been angry. I've been sad. I've been hopelessly fighting a battle within myself.
The doctor broke it down to me in no uncertain terms: "You are sick and your liver is getting worse."
Again I heard the story about the liver being a big processing plant that filters out all the poisons and produces nutrients for the body. When the liver isn't working the poison looks for other places to go. You get nauseated. There are aches and pains. There is the unyielding desire to sleep. You get confused. All of these are signs of encephalopathy. Untreated you may slip into a coma. The last stage is death.
"We need to clear your head." He says.
We go over all of my medication and he tells me what he wants me to do. First we are increasing the dosage of the beta blocker, and the Neomycin and the Omeprazole and the Lactulose. We are getting rid of the muscle relaxer and the anti-nausea medicine and the Ambien.
Fortunately I wasn't counting on any of the drugs he took away. The nausea medicine rarely worked. The Ambien I didn't use very often and the muscle relaxer was for muscle cramps and those pills haven't been helping out that much lately.
The doctor explains to me again about the importance of staying on the Lactulose. "It is your friend and it will save your life. The alternative is that oneday, Lois, will have to call an ambulance and they will load me up and bring me to the hospital and they will shove a tube down my throat and deliver the lactulose this way on the hour every hour until I come back around."
So I guess there's that.
Anyhow, Lactulose is this thick syrup that you drink so that the ammonia that is stuck in your body can hitch a ride out while you are sitting on the toilet having diarrhea. I don't like to talk about it, but that is its purpose; to get the poison out of the body so it doesn't go to the brain and kill you.
Now my problem is that I don't take the medicine on my work days because who the hell wants to have diarrhea all day long during a 12 hour shift? Me...I don't like to. But that's all a thing of the past now and I'm taking the shit 3 times a day every day (Yeah, I did a swear there) and I want to cry. I don't mind it so much at home when I'm off of work, but this work thing really sucks. But hey, I'm alive and not in a coma. So I guess I got that going for me as well.
In conclusion: doctors suck. But they are saving my life so I guess I will listen to them.
I'm still mad.

"We're going to need you to get a little more sicker."

My MELD score has dropped 3 points. This is supposed to be a good thing. It means I have a while yet until transplant.
This little bit of information has brought me some disappointment. It feels like such a step backwards. I suppose I am just tired of it all.
As I've mentioned before, because the transplant surgery is so high risk, doctors don't like to do one until it is absolutely necessary. Most often this happens when the patient is very, very ill. Another reason they wait so long is because the organs are just not available and they really have no choice. Hence the long waiting list.
After I had my endoscopy/colonoscopy on Tuesday, the doctor informed me that everything looked good. No polyps. No lesions. No tumors. The varices in my esophagus stopped bleeding a year ago and I don't appear to have a problem there any more but the varices are now in my stomach and they will have to continue to monitor them.
My transplant coordinator (from now on let's just call her the TC) called me on Thursday and said that my heart and lungs and all that stuff looked relatively normal. The only thing they saw in the bubble echo was that I had a little heart murmur which we were already aware of. She was going to run that by the doctor to see if that was something they wanted to fix.
So basically all these tests came up with nothing to explain away how I've been feeling. I still have awful stomach aches and the shortness of breath doesn't seem to raise any flags. They don't feel that ascites is a factor — which I find boggling. Especially since ascites can put pressure on the diaphragm and make it difficult to breathe. According to the contrast CT scan I had two weeks ago, they didn't see any ascites around the abdomen. The doctor’s diagnosis was that there was maybe a little ascites. Perhaps I am having sympathy ascites.
I also learned that I am starting to get jaundice. Up until now the yellow has been hard to detect because of my skin color. He saw it under my tongue and in my eyes.
And so, after my endoscopy the doctor said that with my new MELD score, it was likely I was good for another year or so before transplant. That seems like a long time considering it has almost been two years since this all started. The way the doctor talked to me seemed a little disconnected. I felt like a man who just brought his car into the service station for a tune up. "Everything looks good Mr. Kyle, bring her back in about 6 months."
"Okay Bob, see you in 6 months."

(Tick tock, tick tock, tick tock)

Meanwhile my thoughts have started running random. I'm thinking about my talk with the TC last week.
"Oh that's a good score. There's nothing wrong with that. You want to hold on as long as you can and they don't want to do transplants too early because of all the risks involved."
She's offered me some encouragement and then she drops the ball when she brings mortality figures into the picture.

"What the Ef!"  I'm thinking to myself.  "And yes, I know the figures. I've known since March 15, 2008. It was a Saturday. The day I got out of the hospital and went home and got on the internet."

Maybe I just need a long vacation. I think I've got a little time now that I have this new window to look through.

The Shape of Things to Come

We had some good news Friday, more or less. My CT scan revealed no lumps or tumors and, amazingly, no ascites -- the excess fluid that I believed all along was sloshing around my stomach. Evidently I just got fat on my own. I suppose having a degrading liver has something to do with that. But the scan did reveal a blood clot located in my hepatic portal vein. More on this in a second.
We first met with the pharmacist who did a run down on all the drugs I am taking. She then informed us that my transplant coordinator wasn't in because she had the day off. I was very disappointed to hear that, because up until now, we have still not had a chance to meet her. My last coordinator left the clinic almost 4 months ago. I was really looking forward to meeting the new nurse who is in charge of my care. That transition has left me feeling a little lost, especially since I had such a good rapport with my last coordinator and now I feel a little lost in the shuffle. And even though I understand that her jumping into a new job and learning the ropes and dealing with the patients who are far sicker than I am, I had at least expected to have some sort of meet and greet in there somewhere.
We later met with a P.A. who seemed rather nice. Lois and I voiced some of our concerns and told her about some of the problems I've been having. After a minute or so she told us about the blood clot. She told us that a clot like this was not uncommon with people who were going through liver failure and that it most likely posed no threat, but that we would have to continue to monitor it and treat it if it started to look like it was going to be a problem. We were also told that this particular clot was unlikely to displace itself and that it would probably just harden and stay where it was.
When the doctor came in we first started talking about my stomach pains and the whole issue of the blood clot kind of got lost on us. Once I started talking about some of the pains I was having and the difficult time I had catching my breath and losing my voice when I talked, that became more of a concern to my doctor than anything else. After I described an area where I got deep chest pains, he decided that I needed another echo bubble cardio-thingamajig. We never talked about the clot. Later I wanted to kick myself, especially after doing a little research on blood clots in the portal vein. Some of the symptoms I read about online described exactly what I was feeling. Elevated liver enzymes, sharp pains beneath the rib cage (exactly what I am feeling) and stomach pains.
I had labs drawn on Friday, so I am anxious to see where my new levels are and see if my MELD score has changed.
But back to the blood clot, the P.A. said that the thing wasn't the type to displace itself, and it shouldn't block the pipe the blood was flowing through. And it's a pretty damn big pipe, it’s as big as the esophagus or the aorta. I’m not sure how she knows it won’t block it.
What makes me madder than hell is that we kind of got lost in all the other topics, when the doctor finally showed up we never went back and talked about the one thing that seemed most important of all, and that was the damned clot.
After it was all said and done, the doctor left us with a series of tests that they are going to run. Another endoscopy, a colonoscopy and the heart thingy. We will see what they find there and they will check my new labs to see if the MELD has changed or if there is anything else that looks out of the ordinary that they might want to think about addressing. When I get my endoscopy I will talk to the surgeon about the blood clot and I am planning to talk with my coordinator later in the week.
The funny thing about it all was that the clot seemed to be the least of anybody’s worries and the P.A. kind of frightened me when her voice started cracking and her face got all flushed at the possibility of admitting me right then and there to see what was going on. But then the doctor came in and said, "Oh, we'll run some test and see where we are."
I preferred his approach a little bit better, even though he did seem a little more concerned with what was happening in my chest than in my stomach. I will get my new MELD score sometime this week. I am hoping for at least a higher number.

Update

I haven't been feeling very well these past few weeks. Lois finally convinced me to call the transplant center and see if I could get my February appointment moved up to an earlier date, but the best they could do was to get me in four days sooner. Not a lot of help. Anyway, my coordinator is going to try to get me in sooner if an appointment cancels.
I am kind of nervous; she mentioned the possibility of doing a Paracentesis procedure. I am not wild about the idea of having a long thin needle stuck into my stomach so that they can drain fluid from me, but the good thing about this procedure is that they can tell if there is an infection. They can also check for liver cancer -- not uncommon with advanced hep cirrhosis -- and remove enough fluid that could be causing some of my breathing and stomach problems. I guess if it takes away my stomach problems then it would be worth it. I will have to wait and see, though.
In the meantime, they are going to schedule another CT scan and look for anything abnormal. If it looks as though I need to have a paracentesis then they will do one I suppose.
I am also curious about my last endoscopy. While the bleeding has stopped in my esophagus, it did show that the varices had moved into my stomach. I don't see this being my immediate problem. I'm pretty sure that if I were bleeding then I would know it. But maybe the stomach varices could be part of what's causing me so much pain? I'll have to ask the doctor about this.
Other than having all these stomach aches, I am doing pretty good. The nausea pills don't seem to be doing anything at all to help, so maybe it is just ascites. Trying to explain this over the phone to my coordinator was kind of hard because I have yet to meet her since my last transplant coordinator left the clinic. She doesn't really know anything about me except for what she's read in my file. It has also been a while since I've seen one of the doctors. I would imagine it is also kind of difficult for them to physically place me, seeing how they probably don't remember me very well. I have only been seen by the surgeons twice in the last year and a half.
I hope that my next visit helps determine some of what is happening to me. As my wife pointed out to me, they supposedly can fix just about anything with the right medications. And this is my worry, I am already taking 18 - 20 pills a day. I worry a lot about my kidneys.
I am hoping for a good year. There is a good chance that I'll get my transplant this year. This is hard for me to wrap my head around sometimes.
Well, the transplant clinic just called and there is an opening on Friday to meet with the doctor. I was also scheduled for a CT scan in the morning. Weehaw! I guess I'll no more on Friday.
Be back soon.