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.

A Couple of Things

Today wasn't a very good day. I woke up a little before 6 am and spent all morning retching with dry heaves until I finally got sick. After 3 ½ hours of this I made my way back to bed exhausted and was extremely sore all over. I think I am clear of whatever it was. Lois seems to feel that it was the chicken we ate last night. I'm not very sure. It is hard to say what brought it on and whether or not it has to do with my health issues. I'm leaning toward the latter.

I was just thinking, I haven't been this sick in a long time. It is nice to think of it in this way. Despite all of my ailments, most of them have been minor considering the circumstance. I have not had to be rushed to the hospital in ambulance or had to be admitted to a hospital for any length of time. Looking back I would say that I've been very fortunate. My MELD score is still very low and I am still able to work. So I guess I got that going for me.

***************** 

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

In a Nutshell

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

Day 5

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


 

Day 2

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

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

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

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

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

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

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

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

...hmm?...

That is all.

Prime Time Shows Organ Transplants

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

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

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

keeping up

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

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

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

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

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

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

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

I say, "I am."

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

Three Post on Organ Donation and Awareness

Here are three post that I have read over the past few months that touch on organ donation. I thought they were all well written and informative. Each of them offer a different outlook on organ failure, organ donation
and organ awareness.

Over the last year I have run across a lot of material that I find useful as a transplant patient. Most of it comes from people who have already undergone a transplant or who are about to. As a person going through chronic liver failure and who has been on the waiting list for over a year now, I know that life can often be very complicated and challenging. The depth of emotions and the physical aspects of the disease can be very taxing and overwhelming for any individual and on their families.

One thing that I've noticed that seems to be a constant; is that the need for tissue and organ donation awareness remains very high. Often people do not recognize this until someone they know has been affected or they themselves are in need of an organ transplant. Many people do not understand that people who are on a transplant waiting list are usually on it for many months and even years; their body functions often failing as time goes on.

• Okay Fine Dammit

• What The Doc Didn't Tell Me

• Suburb Sanity

High Risk

(Click on photo for closer view)

Today one of my co-workers didn't come to work because he's got Swine Flu. I figured since I have a compromised immune system I'd better see if I could get in some place and see if I could get the H1N1 vaccine. 

I called my transplant center and they referred me to the Health Department. They said they were out and didn't expect any until November 1st. 
I then called my doctor's office on the off chance their clinic had some on hand and struck out. It appears it is unavailable everywhere and if there is any around you have to call all over the city and hope that somebody tells you they have some.

I have not really given Swine Flu much thought because I have honestly been more worried about West Nile disease. Especially because I live in a neighborhood with a million mosquitoes. But now that the flu has made a stop in our shop I'm kind of weary. Suddenly two weeks seems like a long ways away.

On Working...

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

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

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

The Gift of Strangers

I received a gift the other day that is very unique in many ways. Perhaps you've already read about it on my wife's blog last week over at Miscellany. I was given a Gift of Love and oddly enough it came to me from strangers.

My wife Lois was befriended by a woman from California through an email correspondence a while back. They started e-mailing each other and Lois conveyed to the woman that I was on a transplant waiting list. As some things have a way of leading to another, this is what began to happen. The woman asked Lois if she could say a prayer. Lois of course said yes, and told me about it later. The next thing that happened was we were asked if her church could make me a prayer quilt. I thought it was a beautiful gesture of goodwill and I said yes. A few days later I received this from Fed-ex.

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

What is a:  Prayer Quilt?

A Prayer Quilt is a lap-sized cover, hand tied with square knots.

As each knot is tied, a prayer is offered for the person to receive the quilt. 

When fully tied, the quilt is given as a gift of love and prayer.

A Prayer Quilt is a statement of our faith in God 

and our belief in His power to comfort, strengthen and heal.

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

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

On Being Tired

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

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

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

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

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

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

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

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

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

(open letter to my transplant coordinator)

Dear T.C.,

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

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

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

Me, One Year Later

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

One Year Later

A year ago today my transplant coordinator crossed the T's and dotted the I's and officially listed me on the transplant list. It is hard to believe that it has been a full year. Today my coordinator told me that she had taken another job in newborn pediatrics and my heart sank. She has been truly wonderful and I am going to miss her. I will honestly say that I shed some tears. Getting to know a new doctor or nurse isn't always very easy. I am not really a people person to begin with. Telling them personal things is even harder. Things in the transplant world can get pretty personal. And graphic.
Doctor: "What color is your poop today?"
Patient: "Uh, what? None of your damn business!"
I really don't want to start that all over again. (Sigh) I will miss you Mrs T.

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

I met with one of the new surgeons today at the clinic and he was very nice. He explained things to us like we had just walked in off the street. I was thinking to myself, "Dude, it's been 16 months now, we're not that naive." But it was also kind of refreshing to get a new beginners outlook on the big picture.
We spent about thirty minutes with him and he said that I am actually doing very well. I tossed some tears as I heard him talking about patients who are hanging on to dear life and who have reached a MELD of 40 and are deathly ill and on dialysis.
I still have trouble with the MELD score when I think of the people who are so ill and near to death, but their numbers don't reflect that. It seems unfair and I wish there was another way to measure a man's illness and be fair to them.

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

One year. It is hard for me to comprehend sometimes what all has happened within the past 16 months since I first got sick. I cannot begin to share with you all the changes that we have endured as a family. And yet, as hard as this past year has been on me physically and the mental anguish we've all had to share in, the year has been good to us and it has brought us much closer. All these moments combined have made things less painful.
I know that this year was difficult, and I suspect the next will be harder, but I also believe it will even be better.

'm bck!

Well, for those of you that follow this blog, you may have noticed that I have had very little to post these days. I am pretty sure that I can attribute most of this to my state of mind. My attention span has really been wandering lately. I've written a few posts, but I haven't found anything I thought worthy of posting. Everything sits in my draft pile and that is as far as they've gone.
I went to see one of my clinic hepatologists for my 6-month check up and after a short review of me and my health he put me on yet another round of medication that I have to take 4 times a day. I am taking an antibiotic to rid myself of dirty poison gathering in my stomach. After my health assessment and talking with Lois and me, the doctor indicated that I was probably experiencing encephalopathy again and that the lactulose wasn't quite doing everything they need it to do. Lois and I were already in full agreement with this diagnosis even before we went to the appointment. We have noticed a big change in my attitude in the past few weeks. When the encephalopathy hits I get real ill-tempered and ornery. It can be very unbecoming.
The ammonia level on my last labs was at 50. The normal range is between 9 - 33. Three months ago I was at 37. I already knew things were not in my favor. Part of the liver process is that a healthy liver will break down and expel poisonous toxins from your body and you will either excrete them by sweating and going to the bathroom. In my case, I have to take many doses of Lactulose to rid myself of the ammonia gathering in my body. If you are living with an unhealthy liver, then the build up of ammonia in the body can make its way to your brain and cause mental confusion, which can cause the night and day reversal effects which often plague me. Severe encephalopathy can even put you in a coma and you can die. In my case, I can often be tempermental. As far as the confusion goes, I have experienced this as well. I will have to think about what I was just doing or about to do. I'll start out talking and then forget what I was talking about. These things bug the heck out of me because nobody wants to lose control. Every so often I will miss taking some of my meds. This irritates me as well because I don't want to count on someone else to take care of these things for me. I am usually very good with my daily regimen, but I sometimes forget about my night doses and Lois will ask me if I've taken them. I know that I'm in trouble when she starts asking if I've taken the Lactulose because that usually means I've been acting like a jerk.
While all these things have been going on, my mood has been somewhat depressed. I don't like this at all because it is a place I'm somewhat familiar with and that scares me. I am really trying with all my might to stay away from the big D.
And I have also noticed bits and pieces of confusion in my writing. I have been writing sentences like this: Today as I passed by a Hot Topic I decided to go inside and do some sightseeing because I thought it might be fun. I noticed that every single person in the store had a piercing either in their ear, nose, eye or navel. Most of them had more than one. That was just with their clothes on. The gal at the register had at least 8 piercings in her left ear and the other guy there had those holes in his ears that were so big you could stick your finger through them. Yikes.
Now, there is nothing wrong with this. But when I type it out some words don't always come out and everything in red disappears: Today as pass by a Hot Topic I ecide to go inside and do soe sightsee because I thought it might fun. I iced that every single pers in the ore had a pierc either in their ear, nose, eye navel. ost more than one. That was just with clothes. The gal at reg had east 8 in left ear and the other there had hose holes in ears big could stick our finger them. Yikes.
YEAH! That's what I thought. WTH? So this is part of the reason why I haven't been posting. Because I sound like a blithering idiot sometimes.

(Translated that says) Be cause I like blither some.

ave a ood day.