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.

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.

Tuesdays Child...

Finally spring is here

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.

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.

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.

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.

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.

What Was I Just Saying?

So here’s the deal. Lately I haven’t been feeling very well. I have been really sore and my joints are killing me, particularly in my legs. A few months ago I went to see my dermatologist because my psoriasis was getting out of hand. I was beginning to scratch so much I was starting to bleed. My biggest concern – on top of the fact that I was feeling uncomfortable and miserable -- was that I didn’t want to risk the chance of infection because of my immune system. So I went to see the doctor and I pleaded that we do something different other than the topical treatments I’d been using. And after reviewing everything we’ve done and thinking about some things we could try, we decided to go with Enbrel injections. The stuff is amazing. (And for the $ you would think so). When I saw the dermatologist the other day he said the psoriasis was gone. I asked him about the joint pain (because I also have psoriatic arthritis) and he said generally that would be the first thing to leave with this medication. He also reminded me that I’ve been somewhat of a puzzle all along and that maybe it would go away last. “Let’s just keep an eye on it.” He said. That was about two weeks ago and the pain has continued to worsen.
Well yesterday while I was at work my knee started bothering me and I began limping. It felt like my knee had just gone out even though I didn’t do anything. I thought if I worked it a little and walked around it might go away. But, six hours later it was still aching. This thing isn’t just going to go away.
Last night before I went to bed I looked at it and it had definitely swelled. Today it even feels worse. I will certainly be making some plans to see my family doctor this week.

One thing I have noticed as time goes on is that there is no rhyme or reason to all the symptoms of liver disease. Everyone is affected differently. People present differently. Most people will share many of the major symptoms that liver failure brings about, but everyone has a unique set of problems all of their own.
I have also become increasingly aware of my body – its likes and dislikes – and it has helped me. I realize that salt is no longer an option in any amount. It just winds up making me sick or bloated so I have pretty much eliminated it. Occasionally I still partake, but nothing excessive. I have also noticed a visual change. My peripheral vision is always going crazy and I constantly see things out of the corner of my eye, more so than usual, and my eyes are always watering.
And then there is the memory thing. Perhaps the scariest feeling of all is when I question my focus. I know that I get a little hazy and my concentration isn’t what it used to be. It’s definitely changing. I can’t read anymore because when I do I suddenly realize I have just made up my own line and verse. It makes for good storyline sometimes but I’m pretty sure my version isn’t what the author was after. The thing I hate the worst is that feeling of emptiness, when you stop in mid stride and everything is blank. When you stop and ask yourself: What the hell was I just doing?

While I was looking in the mirror this is what I was thinking...

I wonder sometimes what others see when they look at me. Am I so shallow that I will let my appearance deceive me into thinking vanity and looks govern my integrity?
It is a rhetoric question, but not without some merit. As this illness slowly takes over my body I stand naked and examine this body.
I used to wear long sleeve shirts to cover my lesions from the psoriasis. Sad that my body looked the way it did; not shamed. But I can not cover the marks any longer, and I stopped long ago. These scars will never leave me.
I can not hide my weight with a larger shirt. It just makes me bigger. And it is not disgust with what I see, it is a memory of what used to be.
There are newer things that bother me now. Freckles and speckles I call them. The psoriasis has left, but now I have living dying skin. The evidence runs up and down my arms and legs like blemishes. The color of my skin is the perfect color for contrast.
My moving is slower. Not so much the result of age, but of dying muscle. It is painful. My legs scream out under the weight they carry.
The runny noses reveal more blood and the lack of sleep is tiring. Exhaustion is from sleep and no sleep, it doesn't matter.
I am self conscious. And that bothers me because I am still the same person I have always been.

Make This Go Away

I get angry. It is a side of me I don't particularly like. I will snap and yell and curse and scream. Later I will hang my head in shame. I never used to be that way. It kind of snuck up on me when I wasn't looking. And it was probably one of the first and most recognizable symptoms of my liver disease. That and the fact that I bruise easily.

When my wife and I visited with the doctors after I was diagnosed with End Stage Liver Disease, one of the questions they asked me was whether I ever experienced any mood swings or had any temperamental behavior. The answer was yes. There is no telling when I began to present, but it would have certainly been marked by years. As my wife and I sat there talking to the doctor and the fellow, my wife recounted a story about my temperament. The fellow looked over at the doctor and the two seemed to have a wordless conversation that led to the fellow leaving the room and coming back in writing out a prescription for a drug called Lactulose.

I was told that I was most likely experiencing Hepatic Encephalopathy. With severe liver damage, the toxic substances normally removed by the liver will begin to accumulate in the blood and can impair the function of brain cells. Because I had just had a varice bleed we knew that I had portal hypertension. In short I had high blood pressure in the portal veins and its tributaries. I am now taking a beta blocker to slow down my blood pressure to help prevent another varice bleed. Toxins that are normally cleansed and purified by the liver were basically traveling straight to my brain. This in turn can lead to impaired cognition, flapping tremor, and a decreased level of consciousness that can lead to hepatic coma or death.
When the liver quits metabolizing ammonia to urea, the ammonia (along with other toxins) travels to the brain and can cause damage to the brain cells. I can't really explain the many effects of encephalopathy because I'm not at all qualified, but the gist of it is poison makes its way to the brain and it is very dangerous. Without treating it you can die.
I was given lactulose because it is basically a stool softener and diuretic that grabs the ammonia and escorts it out of the body. Waste management.
My mood swings have changed a lot since I started taking the lactulose. I am for one a little nicer to be around than I was before. I have mellowed out somewhat. I am not always as quiet as I could be, but I am not as loud either. And at times if I seem a bit too boisterous my wife will ask me if I've taken my medicine. I hate taking the lactulose because...well, who the hell wants to run to the bathroom all the time. But the medicine is one of my life savers, along with taking the purple pills and going on a salt free diet.

Learning to recognise the signs and symptoms of this disease is a continuous effort that we keep a vigil eye on. I am currently taking a regimen of drugs and adhering to a diet to ensure that healthy measures are being taken to minimize any caustic damage that can happen to me while I wait for a new liver. Watching for signs of bleeding is perhaps the most important thing I can do for myself. Having already had a varice bleed it is likely that it can happen again and in fact more bleeding has occurred since that first time I was admitted to the hospital. The thought of hemorrhaging out is scary because it can happen very fast. That is why I am taking a beta blocker and the little purple pills.

This week I will have been listed for 6 months. Part of me wishes for my numbers to change. Part of me says no. If I have ever sat between two stools it is now. As I tell myself to Hang On, I am also saying, "Make this go away".

There's a new game in town.

Well we finally saw the doctor today. Nothing has changed. My MELD score is still 11 and I suppose that is a good thing. My weight has gone up a few pounds more. The doctor doesn't really seem to think I have ascites. He thinks it's just weight gain. Which is a good thing considering I really don't want anybody draining fluid out of my body.
I have another endoscopy in April or May, and I need another CT scan in three months. So I guess I got a clean bill of health. And oh yeah...he assured me that I will still be getting sick. That's something I have to look forward too.
He was very nice. We are basically meeting up with a whole new team of doctors since the hospital went through some problems among the old transplant team. I don't know the whole story but, from what I do know I should probably just keep my mouth shut. The point is I have new doctors now and it sounds like they all have some wonderful credentials and the experience to back it up with.
I'm hungry... Wait a minute...if I'm not sick am I just fat?

When Good Days go Bad

I got up and I watched The Young and the Restless. I really must be starting to get sick. Actually this is a good day.

************

Today I have been off cigarettes for 9 months! Sadly enough I just had a craving.

my tummy hurts

Do you know how most people usually stuff themselves over the holidays? Or how on Thanksgiving Day we tend to over stuff ourselves as full as the turkey's that we are eating? This is how I generally feel when I get sick. Only worse. I get a constant stomach ache that just doesn't go away. They usually last for a number of days and they are almost always very painful.
I have been sick now since Friday night and nothing helps. I can't take things like Pepto Bismo because it is harmful to my liver. During these spells my stomach swells and I feel bloated. My muscles hurt and I start to cramp. I get back aches and I wrestle with vomiting and diarrhea. It is hard to sleep because the pain is so uncomfortable. And every time I mention that I am doing well or that things have been good, I end up getting sick again. (I really need to stop doing that).
These bouts come and go and there is no way to distinguish just what triggers them. I am thinking that maybe it is the food I am eating at the time. Or it is one drink I shouldn't have had. A cup of coffee. A can of pop. That oh so yummy sandwich from the corner deli.
This weekend has only been slightly miserable. Usually when this happens I am doubled over crying. I don't get why this is any different but I am thankful that it is not worse.
Anyhow, this has been my weekend. And just a few moments ago my transplant coordinator called me to tell me that they need me to come in so they can get new labs. Maybe this is a good thing. Taking blood on a sick day. It would seem as though the numbers might change being this sick. I guess we'll find out.

5 Months!

It has been 5 months now since I have been listed. As I have mentioned before, I was told because of my blood type I was probably looking at a 2 year to 2 and a half year window for a transplant. Now that I have almost seen my way through that first half year, I am going to start counting down in quarters beginning next month. For now I am going to pat myself on the back for getting through these past few months without a lot trouble.

It hasn't been easy though. I am really starting to notice many changes in my body. I have gone up in weight and size and that bugs me sometimes. My stomach has swelled out a lot and I continue to rub it like its a new appendage. My psoriasis is much better due to the fact that I am taking Embrel shots and even though they hurt like hell I feel better. I still wrestle with my sleeping issues at night, but I am no longer afraid of the dark. I missed how that happened, but I noticed it last week when I reached over one night to turn off my nightlight and it occurred to me that I had been doing it for the past couple of weeks. Strangely enough I still grab the tiny led lights that fit in the palm in my hand and hold on to them or leave them next to my pillow from time to time.

But there are still the emotional things I deal with that I don't talk about. That's where this writing thing has come in handy. And I really feel a lot of pain these days. All the way to the bone. I will have to bring this up with the doctor.

So...I am happy that time has moved forward and the effects of this disease have not been as harsh on me as they might have been.

How I Feel

Every so often I run across a song that moves me. Today it is this song.
I saw this lady on an MTV show a couple of years ago on a Rolling Stones segment. She has a beautiful voice and writes wonderful lyrics.

Of Past and Glory

Today is my birthday. In 30 minutes I will be those years and one more day older. I am sitting here counting my blessings. I have so many.

Despite everything that's happening right now, I consider myself pretty lucky.

Last week I was counting my regrets. I do that from time to time. Thinking of the things I would of changed along the way. But I always end up back here in the same place. And the truth of the matter is I couldn't change anything without it ultimately changing my life.

Everything I am, everything I've become -- the course of my life would change if I erased any of it.

I know this now.

When I left home 37 years ago I did not think about the events that would follow me.
I did not think about a broken heart,
or child abuse,
or sick sadistic strangers.
The world seemed so trusting then. And yet later these things would happen to me.

It would be a long time later before I would learn to forgive;
before I would learn to trust.

And so...
I am truly one of the lucky ones.
I am blessed.
I am a survivor.
I count my regrets only to remind me of how lucky I am.
My blessings are so many.

That Moment of Truth

(The following happened at a different transplant center. I have since moved my care to another facility. There were a number of reasons why I moved from the other facility. This was not one of them.)

On April 30, 2008 I had my first liver consultation. I met with the transplant coordinator and she started out my day by taking me to meet various people who would be involved in my treatment. I had a weigh in and a nurse took my blood pressure and pulse. Then we talked with the Transplant Coordinator and she walked us through the pre-liver transplant guide. Then I had a consultation with a dietitian and met with one of the surgeons that was on the transplant team.

The first thing I noticed about him was that he seemed very cold and removed. He had a manner that said I don't want to be here but this is my job. He came in the room and looked at me and my wife and introduced himself. And then he went back to his clipboard like that was somehow more important to him than actually looking us in the eye and talking. My first impression was shattered. I guess I was hoping for a little sensitivity and compassion from him like we had gotten from the first doctor we had met a month ago. Instead he finished reviewing my chart and looked at me without really looking at me. He said, "Well you're dying and you need a new liver. That's why you are here. So here's what we need to do..."

I felt the sting first. And then the watery eyes. But I did my best to hold them back until he left the room. I was not going to cry in front of this SOB.

I did not hear anything else that he had to say. All I heard was his voice echoing in my head, "You're dying."

I was spellbound. I already knew that I needed a liver transplant. But I had not yet heard the words death or dying. And if I had, they had not been presented to me like this before. Certainly not in a manner that seemed so cold and unsympathetic. I was devastated.

Everything I had ever known or believed had changed. Nothing in my life would ever be the same. I cannot explain that feeling to you. There is no way for me to describe it.

Unless perhaps you can imagine.
Imagine that you are standing on a long hallway carpet and at the very end stands another. The Other reaches down and jerks the carpet out from under you and you go sailing. Turning. Flipping. Stumbling. End over end you go. Flailing. Clawing. Crashing. Months go by and you are still out there spinning. The fall is almost over. Still...everything you knew has changed. You've redefined life and death. You've measured and weighed things. Your perspectives have changed. This is wasted. This is precious. Slowly you gather yourself up and move on. Somehow you are still in one piece. This was how I felt.

Tomorrow I am meeting with new doctors. A new team. This will be my third round of doctors since last March. I think of that one visit from time to time and I get a little mad. I get angry that this man seemed so insensitive. And maybe he wasn't trying to be at all. But I am looking forward to meeting these new doctors now that all the cards are out on the table.

The Sting

(Years ago I use to write a little bit of prose and poetry. For myself. I have not done this in a very long time. When people ask me about my liver and I mention hepatitis, I get the look. It really makes me mad.)

The Sting

People make assumptions.
From loose threads
Holes grow bigger.

I dig my fingers into myself,
Bruising.
Holding tightly I scream,
And pound the ground,
"I. Hate. It."

I am sore from the wounds.
The cold stares;
My mental anguish.
I reach and grab air
Wanting nothing more than peace.

I wonder if I came at you
And grabbed your throat
Would you choke?
Cry?
Scream?

Like monsters,
Wet teeth gleaming,
You bite with no words.
Just your looks.
Just those looks.

CIRCLES

I wrote this one night by candlelight in the middle of the woods.
It was cold outside because my wood stove was burning behind me as I sat at my desk and stared out the window. All I saw was my reflection flickering. Pencil in hand I scribbled.





Along this path,
I find myself being swept up within circles.
Circles which seem to merge in & out of others
Intricately connected.

There are borders with no lines,
And lines eluding boundaries.
There is regression - transition,
Resisting - yielding,
Stopping - going.

Power lurks here.
Magnetically phenomenal,
Invisible to sight,
Weightless save for feeling.

I have seen the hint of a pattern - spiralling.
First in; then out - like life breathing.
Pulsations rising to the tempo of heartbeats,
Vibrations to sound,
And truth & discovery to light.

Out here - within,
There are no limits giving reasons to withhold.
Only phantom ghost,
or shells,
Leaving apprehension to lead me astray.

Just A Bug

(Tuesday morning ~ 6:ish)

I woke up this morning and nothing had changed. I felt incredibly sore. My stomach hurt like crazy. Lois went to work early so I had to mind the clock and make sure the girls got off to school all right. I just barely closed my eyes after I heard my wife leave when I heard the oldest daughters cell phone alarm chirping. She had planned a backup. What a wonderful daughter. I heard her rousing her sister out of bed and then I decided to look at the clock. 7:14 am.
"Girls," I asked, "What are you doing up?"
"We don't know." They said.
"You still have twenty more minutes. Go back to bed."
"Okay."
I think we need to work on that alarm thing.
Twenty minutes later my alarm started chirping and I heard the girls getting up. Sweet angels.
I played dead for twenty-five more minutes and listened to them quietly getting ready for school. They were being extra quiet because they knew I wasn't feeling good. And then I heard them saunter out the front door and shut the door ever so quietly - sllaamm. Such good girls!

(10:40 am)

I don't feel anything. I am not groaning. The throbbing pain is all gone. After sleeping for more than 2 1/2 hours I am suddenly feeling back to normal. I am sore as all get out but I think I am back to normal. Unbelievable.

One of These Days I Am Not Going to Make It to Work.

(Sunday afternoon)

I woke up feeling really sick. So...I figured that maybe if I just laid here for 3 hours it would go away. I could just take me a little nap and then I would feel better. But that's not happening. I'm guessing it's ascites. The poison is looking for a way out.

(Monday - 21 hours later)

I told myself a while back that I didn't want to write about the gross stuff. But now I think I will just this once, just so everyone is clear about what I'm going through and how I feel.
We all get sick. Nauseated, vomiting and diarrhea. They are all normal functions of a sick body. When I get sick there is an added misery. It is painful. If you are up all night retching then your body will begin to ache. Part of the reason is because your body is weakening. That is one of the reasons we have to eat right and exercise. But it doesn't stop there. As our bodies continue to wear down the pain increases each time that we have a bout with sickness. It sometimes takes me days to bounce back from an episode.
Yesterday I spent all day on the couch absolutely dying. There is nothing worse than having to vomit and not being able to. Unless of course it's staying up all night tossing and turning in misery until 4 or 5 in the morning before you finally fall a sleep for an hour only to wake up and start all over again. And then to find out that you still can't get sick anyways.
At 5am this morning I double-dosed some lactulose and I finally found some rest, knowing full well I'd be up soon enough to rid myself of the uglies brewing in my gut. As awful as it all seems, given a choice between vomiting and diarrhea I would skip all the vomiting. It just hurts too damn much.
It is 10 am now the following day. I just spent twenty minutes in the bathroom still trying to vomit but it's not working. The pain in my stomach is getting unbearable, if that is at all possible. Throw in some waves of chills and sweats and you have the makings for a toxic storm. I am so sick of this crap and it hasn't even started yet.
I'm going to take a nap now.

Now

It is 2:30 in the morning. I have given myself up to this sleeping thing. I fall when I fall. When it gets past 3 and closer to 4 in the morning I usually force myself upstairs and fold. Even then I still toss and turn. I can't remember ever getting a good nights sleep with out self-medicating. I usually save that for when I have to go to work. Half of the time I forget and then it's suddenly midnight and I know that the next day is going to be a drag.

(10 hours later)

My transplant coordinator listed me 4 months ago on the 27th, the paperwork was official on the 28th. 4 months now I have been listed. 10 months have passed by since I first went into the hospital. That's 2 weeks shy from 11 months. The doctors said that when you have a bleed like the one I had things can go south really fast. He went as far as saying that I probably would need a transplant within 18 months. That leaves me with 7 and a half more months. Now I'm not sure how everybody else does math, but that edges me out of my two and a half year window of waiting for a liver by one full year. How is that suppose to work?

Since then I have moved my care to another hospital. I have not had a chance to bring this up with my new doctors but it is one of the first questions I will be asking when I see them next month. So far my MELD score has moved just slightly. I was at eleven a month or so ago. My new labs will be drawn next month. The first time they took 20 viles of blood and did two skin markers to check for T.B. and something else. I can't imagine that they will be drawing 20 more viles of blood, but I'm guessing they will be taking a lot of it.

I haven't been sick since Thanksgiving. Even my stomach aches have dissipated. I did catch a cold though and I am bouncing back from it. One thing I am always trying to do is avoid germs and sick people.

Another thing I have been working on is my psoriasis. I need to avoid infections at all cost and my latest endeavor has been to rid myself of this awful scratching. I went to see my dermatologist and he has started me on Enbrel. I am now taking shots once a week and I am one month in on a one year program. That sucks for me because I really hate shots. On the other hand I think my wife likes giving them. She seems to get pretty enthusiastic on shot night. So far they seem to be working. I haven't felt any weird side effects from them at all. I still need to get some labs drawn to see if they are effecting my liver in any negative way. I sure hope not. As much as I hate shots, I hate the discomfort I am constantly going through with the psoriasis.

(Since I started writing this I have found out that my transplant team might be moving somewhere else. I'm not sure what that means just yet. It is Saturday and those questions probably can't be answered until Monday. That is upsetting because I really like these guys a lot and if they are all going then what is to happen with the liver transplant center.)

That is all.

Your Times They Are A Changing

(I guess we see what we want to see. We hear what we need to hear. We believe whatever it is we want to believe. That is perhaps until the moment when the hand of God sweeps down and swats you across the head. This is what I believed anyways. I still believed that I was going to be alright. I did not get my swat on the head at this meeting. It would be at my next.)

I was released from the hospital on March 15, 2008. I was sore and tired and I went back to work later that week. My next appointment was with the liver specialist about 2 weeks later. I suppose I had a lot of time to think about everything that had happened. But even so, the reality of everything hadn’t sunk in yet. I knew that I was going to have to stay on the purple pill for the rest of my life. You can’t have a varices bleed and walk away from it without fixing it somehow. Taking the acid reflux medicine was the best thing I could do for myself. The pills would help the lining of my inner walls sort of speak. I needed no weakness there. And I would have to go on a beta blocker. This would help control the blood pumping through the veins by reducing the bloods pressure flow. The blood that was rushing through my body was backing up because my liver was failing. And as a result it was finding new places to go. In my case I ended up with an esophageal varices bleed.
At my appointment the resident came in first to ask me a bunch of questions. Had I ever had a bleed before? How did I generally feel? Was I tired? Did I ever feel sick or get nauseated? Did I stay up late at night and cat nap in the afternoons? Dozens of questions were asked; all of them had to do with the signs and symptoms of liver failure.
After the doctor came in and we talked for a while, he explained to me that I was going to need to have a liver transplant. But first we would have to take a lot of tests and then find out where my MELD score was. Many things would have to happened before I was even considered for a transplant.
I went home feeling good about the things I'd learned. I liked the doctors I had talked to. I knew that I was in a precarious position from the moment all of this started, but I didn't really get it until later. One month later.
In the meantime I went about my business, There was a CT scan, a dental appointment and I had to see a podiatrist about something happening with my foot. Life moved on. I moved on. Until that next appointment. There things would change. I would change.

Lessons I learned.

Before I ever saw a liver specialist, I had to spend a few days in the hospital getting better. I was on a 72-hour drip with some medication that they told me was necessary to help stabilize my body fluids and functions. They told me it was absolutely necessary that I stay on this drip to get my bleeding to stop. Otherwise it was all for nothing and we'd have to start over.

Around 9pm on the second night when one of my I.V. bags ran dry, the night nurse wandered in after the monitor started its annoying beeping and disconnected me. He made some light conversation and then left the room. A few minutes passed by and I hollered for him when I saw him passing through the hallway. I asked him where my next bag of medicine was. He informed me that I was all done. I informed him that he needed to check his records because I was on the stuff until 4:30 the next afternoon. Long story short, I was right and he was wrong. The nurse apologized repeatedly and then explained to me that he had missed a note that was attached to my chart and then thanked me for letting him know.

A simple mistake?

I would have initially thought so had something similar not happened earlier and then later. In my 5-day visit I had 3 such mistakes. That worried me. My wife was there the majority of the time so I felt well looked over and cared for. But when she was gone I was basically on my own. Who watched over me then?

Fortunately, I wasn't in such a catatonic state that I couldn't take care of my own needs. And I wasn't afraid to ask questions. Nor was I counting entirely on the hospital staff to take care of me. I remained wary.

These things also bothered me because suddenly I had the "What If" questions going through my brain. And I shuddered to think about the people who were there who had no family support with them or were otherwise so indisposed that they couldn't take care of their own needs if something wasn't right. If something went wrong with their care who would come to their rescue?

The questions I had not only bothered me, but they left me with an overwhelming sense of grief for less fortunate patients. Knowing that all of these things that happened to me may have been just simple mistakes, I still worried. The fact is, even though you might have the best doctors in charge of you, they don't sit around the clock with you on 10- or 12-hour shifts tending to your care. And the staff who does, they don't spend all their time with you, either. They split up their time with a number of other patients and the normalcy of routine becomes just that. Routine. In the shuffle of things, sometimes a patient's care gets overlooked. To me, that seemed awfully frightening. Because if I end up in a hospital, the last thing I want for my care is routine.

Now I know that this seems like a bleak observation. And I'm not trying to make it into something more. I think hospitals, medical institutions and medical staffing will always have these problems. That is because the medical and health world are too large of an industry and mistakes and unforeseen circumstance are sometimes going to be unavoidable. Nobody. Is. Perfect.

The lesson I learned is to watch out and be responsible. Ask questions. Take notes. Ask more questions. Do it for yourself or do it for your family, but do it. It may be the smartest thing you can do for yourself.