Sunday, December 13, 2009
Wednesday, December 9, 2009
My muscle mass is slowly wasting. That means my strength is leaving. I am going to have to work on this. If I can do anything for myself right now then this is it. I need more exercise.
I haven't been writing very much because I keep losing my train of thought. I don't think it's terribly bad, but it is certainly more difficult. Sometimes I will be talking to Lois and I'll lose the words. I have to stop and think about what it is I'm saying. She'll ask me repeatedly what it is I'm trying to say and then I will get frustrated and tell her to hang on a second. This is a big worry for me. I don't want to lose my mental faculties.
My psoriasis has returned. I was hoping that I'd have my transplant before this happened. I'm not sure what to do about this new development because it takes a lot of time to treat it and it is uncomfortable. I was actually thinking about asking my doctor about trying the interferon treatment again to see if we could fight the HCV. I figured that if I was going to be miserable for the next few months then maybe I could give it a shot and see what happens. But the interferon has a nasty way of making the psoriasis flare up so maybe that won't work right now.
I realize that this post probably sounds kind of depressing. I think I'm a bit overwhelmed these days. Up until recently I've tried to keep my head on straight. And in all honesty I think I've been doing a pretty good job of it.
I hope to be feeling better by the next time I post again.
Thursday, November 26, 2009
Today we are heading to Paradise for Thanksgiving. It will be a nice drive.
I just wanted to say Happy Thanksgiving to everybody and may you all have a wonderful new year.
Monday, November 23, 2009
Sunday, November 15, 2009
For a brief moment on Sunday nights, the cameras will allow people to glimpse characters who are in need of a heart transplant. Or maybe it will be a lung, or a liver. Maybe one night the story will raise opinions about the moral and ethical debates of giving an organ to a reformed drug addict. Maybe it's about 'who is getting an organ first' when there is a slip up in the system and one Transplant Center thinks it's theirs when it's already been offered to another. Or maybe it's just about a clock counting backwards and a life running out of time.
The stories for the most part remain true to nature. They capture the end result of the horrific accident that sends an ambulance screaming towards Three Rivers emergency room. There is the girl who keels over at her gymnastic meet because she's too sick to stand from a damaged liver and the innocent little boy who gets crushed at the fair. There are also the friends and families involved and you get a sense of how it must be to have your loved ones hanging on to dear life while dear life is being ripped away from them.
I suppose in a way it doesn't really matter how they got there. It's really about what comes next and how they're going to get out of it. Will they make it out?
Carol Barbee is the producer/writer for this new series and she spent time researching for Three Rivers at The Cleveland Clinic with Dr. Gonzalo Gonzalez-Stawinski. His professional career as a surgeon carries a list of credits that include cardiac surgery, heart transplants and coronary artery bypass graft surgery, to name a few. Dr. Robert Kormos, who is co-director of heart transplantation at University of Pittsburgh Medical Center (UPMC), also provided input for the writers of the show. And perhaps one of the coolest things I thought that happened at the Three Rivers set was a visit by Thomas E. Starzl. Starzl has been called "the father of modern transplantation." He performed the first human liver transplants and is considered one of the pioneers of transplants.
I like the show because it offers a certain view into something I'm trying to understand. While I'm sure a big part of it is my connection to the transplant world, I am also hoping to be educated. Maybe a show like this will raise awareness for organ donations.
In July of this year there were more than 102,000 men, women and children waiting for an organ transplant, according to the United Network for Organ Sharing (UNOS). On average there are about 18 people who die each day waiting for an organ transplant. This isn't a very large number, considering that there about 100 more who die each day in auto accidents. But it is a death toll just the same, and when added to another and another, one begins to realize lives can be saved.
Sunday, November 8, 2009
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."
And that is okay.
That is okay.
Wednesday, October 28, 2009
and organ awareness.
Thursday, October 15, 2009
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.
Sunday, October 11, 2009
I am starting to feel worse these days. I don't share this for sympathy, but more for fact. But mostly because this is really some what of a journal. It is like my log so that I have something to look back on. I'm not sure why I started this, but it has been like therapy. For some reason it seems important that I document all this. And then there is also the friendships that I have developed. They have become both dear and important to me at the same time.
So I come home and I curl up into a ball and there is a movie on T.V. called: Life as a House. I have no idea what it is about and I am too tired to change the channel. So I watch.
Dude, this movie sucks of bittersweet. This man (Kevin Kline) is dying from terminal cancer. And in the meantime nobody knows that he is dying. He has an ex-wife played by Kristin Scott Thomas, who is disheartened because she has a mixed-up teenage son who takes drugs and just wants to die or be left alone. He doesn't seem to know what he wants. So Kristin sends her son to live with his father (Kline) for the summer.
I was getting ready to change the channel because there was all this yelling and screaming going on by basically everyone and then I guess my morbid curiousity got the better of me because I didn't. So Kevin Kline is tearing down this house in southern California and he is going to rebuild it. He is trying to get his son involved by helping him, but the kid just hates everything in life and refuses to budge. Eventually all these other things start to happen in the film and the kid starts helping his dad build this house. That is really the storyline, that and the fact that the whole family grows closer and they eventually find out that dad is dying.
So, I'm lying there wiping tears off my face and I can't help but think about my own personal stuff. I'm getting sicker day by day, but I can't and don't, share some of the things I am going through. I mean, when Lois picks me up at the end of the day and she asks me how my day went, sometimes it just doesn't seem necessary to say I was miserable all day long. What good does it do. And unless I come home and crawl into bed for a 2-hour nap I think she's pretty good at assessing whether I am feeling all right. Plus, if I am feeling awful I will be the first to tell her.
It is clear to me now that I am getting sicker.
Earlier when my body started changing my heart sank. There were bloody noses, and weight gain. There were skin lesions and the gynecomastia. My appearance hit me hard, but I managed to keep myself from going insane. It was what it was. The stuff that I couldn't see also hurt. The internal physical stuff. Now all these things are finally ganging up on me.
I am really sick. My biggest worry now is being able to keep working. I think this scares me the most.
Tuesday, October 6, 2009
Saturday, September 19, 2009
Extreme Tiredness in Liver Disease
Wednesday, September 16, 2009
I just wanted to say that I appreciate all that you've done for me over the past year. Every time I've had any questions, you have done what you can to answer them. Even if it took you a day because you were very busy, you have always managed to get back to me and not leave me hanging. Whenever I was going through a panic attack, you were always able to calm me down and assure me that nothing was wrong. You have always been able to assess the situation and explain to me that it was just a new symptom of the disease that was presenting and, if needed, you had the doctor call me right away. Which, incidentally, has happened more than once. Generally things were resolved with new medication and life continued on.
I have always appreciated the fact that when my wife and I had appointments, you always treated me with genuine respect. I have literally had consultations where the doctor or nurse chose to talk to my wife and not even look me in the eye, for whatever reasons they had. Apparently some people assume that because I'm sick, then perhaps I might not be able to understand them. Sometimes it has been necessary to say, "Yoohoo...eyes over here." That is a discourtesy that you have never inflicted on me and I thank you from the bottom of my heart.
Anyway, everything that you have done for me (us) has been greatly appreciated and Lois and I are going to miss you. On a professional level, you have done a great job and on a personal level you have been a good friend. We will miss that.
I am guessing that you have many patients pre- and post-op who will be very sad and shaken to see you go. I can only imagine that this will be hard for some of them (not to make you feel bad). But I think I can safely say that a lot of us are going to miss you.
Sincerely, Lois and Beaux (this is Beaux, by the way)
Oh yeah...and don't be a stranger. Drop us a line sometime.
Friday, September 4, 2009
I originally posted this on my other blog because this one hadn't yet been conceived of. And once I started writing about other things I knew that I couldn't write about my liver disease in the same blog. So I eventually started this one, The Paradox Syndrome.
Even the name of my other blog This Isn't Happening suggested my need to want to write about everything that I was experiencing. I wanted to write about the anger and pain and the grief that I had been overcome with. I wanted to laugh and I wanted to cry. I wanted to smile and I wanted to joke. Eventually my own spirit began to change and I was able to do all of them from post to post.
In the beginning I didn't realize that I was about to share this with just anyone. I was still very much alone in it. I would not share my anguish even with my family because I knew it would hurt their hearts. But I learned those feelings were no longer secrets, and I would find that out soon enough as I watched my wife weep and wipe tears from her eyes every time I wrote something. Still, my need to put pen to paper was a driving force and I continued on.
A year later, my spirit still wavers. And as haunting as all of this has been I am moved by my own recognition that life is fleeting. It is easy to hold on, but it is harder to let go. Occasionally I am that conjured vision of that boy staring through the window.
I wanted to re-post this because it has been a year now since I started all this. This is truly a reflection. While I may look at death with different eyes, I now look at life with open eyes: This Isn't Happening
Tuesday, August 25, 2009
Doctor: "What color is your poop today?"
Patient: "Uh, what? None of your damn business!"
I really don't want to start that all over again. (Sigh) I will miss you Mrs T.
I met with one of the new surgeons today at the clinic and he was very nice. He explained things to us like we had just walked in off the street. I was thinking to myself, "Dude, it's been 16 months now, we're not that naive." But it was also kind of refreshing to get a new beginners outlook on the big picture.
We spent about thirty minutes with him and he said that I am actually doing very well. I tossed some tears as I heard him talking about patients who are hanging on to dear life and who have reached a MELD of 40 and are deathly ill and on dialysis.
I still have trouble with the MELD score when I think of the people who are so ill and near to death, but their numbers don't reflect that. It seems unfair and I wish there was another way to measure a man's illness and be fair to them.
One year. It is hard for me to comprehend sometimes what all has happened within the past 16 months since I first got sick. I cannot begin to share with you all the changes that we have endured as a family. And yet, as hard as this past year has been on me physically and the mental anguish we've all had to share in, the year has been good to us and it has brought us much closer. All these moments combined have made things less painful.
I know that this year was difficult, and I suspect the next will be harder, but I also believe it will even be better.
Thursday, August 13, 2009
I went to see one of my clinic hepatologists for my 6-month check up and after a short review of me and my health he put me on yet another round of medication that I have to take 4 times a day. I am taking an antibiotic to rid myself of dirty poison gathering in my stomach. After my health assessment and talking with Lois and me, the doctor indicated that I was probably experiencing encephalopathy again and that the lactulose wasn't quite doing everything they need it to do. Lois and I were already in full agreement with this diagnosis even before we went to the appointment. We have noticed a big change in my attitude in the past few weeks. When the encephalopathy hits I get real ill-tempered and ornery. It can be very unbecoming.
The ammonia level on my last labs was at 50. The normal range is between 9 - 33. Three months ago I was at 37. I already knew things were not in my favor. Part of the liver process is that a healthy liver will break down and expel poisonous toxins from your body and you will either excrete them by sweating and going to the bathroom. In my case, I have to take many doses of Lactulose to rid myself of the ammonia gathering in my body. If you are living with an unhealthy liver, then the build up of ammonia in the body can make its way to your brain and cause mental confusion, which can cause the night and day reversal effects which often plague me. Severe encephalopathy can even put you in a coma and you can die. In my case, I can often be tempermental. As far as the confusion goes, I have experienced this as well. I will have to think about what I was just doing or about to do. I'll start out talking and then forget what I was talking about. These things bug the heck out of me because nobody wants to lose control. Every so often I will miss taking some of my meds. This irritates me as well because I don't want to count on someone else to take care of these things for me. I am usually very good with my daily regimen, but I sometimes forget about my night doses and Lois will ask me if I've taken them. I know that I'm in trouble when she starts asking if I've taken the Lactulose because that usually means I've been acting like a jerk.
While all these things have been going on, my mood has been somewhat depressed. I don't like this at all because it is a place I'm somewhat familiar with and that scares me. I am really trying with all my might to stay away from the big D.
And I have also noticed bits and pieces of confusion in my writing. I have been writing sentences like this: Today as I passed by a Hot Topic I decided to go inside and do some sightseeing because I thought it might be fun. I noticed that every single person in the store had a piercing either in their ear, nose, eye or navel. Most of them had more than one. That was just with their clothes on. The gal at the register had at least 8 piercings in her left ear and the other guy there had those holes in his ears that were so big you could stick your finger through them. Yikes.
Now, there is nothing wrong with this. But when I type it out some words don't always come out and everything in red disappears: Today as pass by a Hot Topic I ecide to go inside and do soe sightsee because I thought it might fun. I iced that every single pers in the ore had a pierc either in their ear, nose, eye navel. ost more than one. That was just with clothes. The gal at reg had east 8 in left ear and the other there had hose holes in ears big could stick our finger them. Yikes.
YEAH! That's what I thought. WTH? So this is part of the reason why I haven't been posting. Because I sound like a blithering idiot sometimes.
(Translated that says) Be cause I like blither some.
ave a ood day.
Friday, July 24, 2009
Aside from the physical discomfort that I have going on, I think I am mentally wrestling with the biggest dilemma of all. How on earth are we going to afford to pay for my after care drugs if I am unable to get help from the Indian tribe? In the last few months Lois and I have managed to do things I thought virtually impossible. Getting my adoption records opened was one of them. We are now working with the Pasque-Yaqui Indian tribe in Arizona and trying to figure out what steps are next. They tell us this could take months. There are days when I feel as though I don't have a lot of months. On Monday I am getting new labs. I am anxious to see what this reveals.
I am trying to keep a level head about all this, but as my health declines I am starting to worry. No after care drugs means No transplant. This is hard for me to fathom. And all I can see are giant red letters stamped on some insurance forms that say: DENIED: THIS CANDIDATE HAD NO MONEY. Isn't it hard enough already to have to face these odds? Three to One.
This is what they tell you your chances of survival are -- 3 to 1. In the first year, roughly 17,000 people will need a liver transplant and only 6,000 or so will get one. The other two-thirds move into the next year. Of that number one-half of them will be removed from the list for whatever reason. Maybe they have another condition that makes them ineligible to stay on the list. Maybe they have been removed because they are not following the rules. Or perhaps they are no longer candidates because of some other reasons. Or, they have already passed away because it was too late. The other half will then move into the following year if nothing becomes available. This confuses me. They are basically saying of that two-thirds, half will die. So why don't they just say that in the first place? It is really kind of a 50-50 thing from the start.
But anyway, THIS CANDIDATE HAD NO MONEY. How messed up is that?
When I get high enough up on the list what is going to happen? The doctors will be doing their review board and John Henry, Itsy Bitsy and myself will be next in line. But then so and so will say, "We're going to have to scratch out Beaux. He still doesn't have any way to pay for after care. Who's next on the list?" It will be that simple. I will not get the phone call. Well...actually I will. The finance people will call me from time to time and politely ask, "Have you figured out what you're going to do yet?"
And me: "Uh, you mean other than waiting to die, butthead?" I suppose I'll refrain from the sarcastic wit, seeing how they do have the power to knock me entirely off the list. There is nothing better than having my life placed in somebody elses hands. Truly.
The other day I was telling Lois it seemed so odd that I actually had people following me. When I first started this blog it was really just a record. Maybe it would be a good way for me to vent. And I thought that maybe there were others out there that I could talk to who were experiencing the same things that I was. All these things were truths. It has been really good for me and I have learned many things about this illness. I have also met many people in the blogging community and people who I correspond with by e-mail. It occurred to me that I have never said "Thank You." I love that people e-mail me and leave me comments. It lights up my day. As hard as things have been, I find comfort in a single sentence that just says, "Hello" or "Take Good Care." These things bring a smile to my face and sometimes tears, but they are a welcome and a blessing to me. So, I want to share that with you all now that it is on my mind. I am truly a blessed man. Thank you.
Wednesday, July 8, 2009
The other day I got a terrible cramp and my wife had a suggestion. "Maybe you should run one of those body massagers over your muscles and see if that helps." We found a massager and the next time it happened I ran it across my calf and in less than 15 seconds the cramp had started to dissipate until it stopped all together. Later that night after I went to bed I was awakened by one of my awful night time spasms and I used the massager. It took only seconds for it to go away. I am not sure if this is really working yet, but it does seem to be doing the trick.
I am really psyched about this new discovery that Lois has come up with and I am hoping that it is a solution to my problem. Before this, it usually took several minutes for my cramps to go away. Sometimes I would have to wake up and walk around and I'd lose quite a bit of sleep because of them. But now they are gone within seconds and I can easily fall back to sleep.
If there is anyone else out there who is reading my blog and have cramping issues, then I strongly urge you to give it a shot. It sure can't hurt.
Thursday, July 2, 2009
When I remove a bandaid it will sometimes tear my skin.
At night when I sleep I will sometimes get the worst cramps ever and I whimper in agony.
If I bump myself I will bruise.
I am constantly tired and restless, and without my medication I cannot sleep or stay awake.
I make 173 trips to the bathroom each day.
My jaw hurts.
My eyes constantly water.
It gets harder and harder each day to move, bend over, breathe, get up, sit down, push, pull and sometimes even talk. I lose my voice because of my shortness of breath.
My tongue is yellow white blue or green and I am sure the foul taste I carry in my mouth is just as foul outside of me as well as in. I will turn my head when I talk to you. I will hold my breath. I dare not look at you for fear of shame. I curse to myself when you leave the room.
I am very sensitive. Tears swell in my eyes when I hear about the little boy who fell in the river. I will say let's go look for him. Off we go to search the black muddy river.
I will cry when you leave the room. I will cry when you enter. But I will also laugh.
I will make fun of myself. I will make fun of you.
I will forget.
Sometimes I will ask for permission. "Can I have that?"And sometimes I will demand. "Give me that!"
I don't know why.
I get bloody noses.
I will break out in a cold sweat. A minute later I am hot as hell. I will feel like passing out. I don't.
These are just some of the things I go through each day. Some of the things are just too personal or graphic for me to express.
These symptoms alone are nothing. I could handle one or two of them together. All at once it is a bit overwhelming. An onslaught.
Normally I hesitate to speak like this -- out loud -- but something happened.
This week a fellow blogger passed away from liver failure.
Mark Emmert was one of the first people to ever contact me who was going through liver failure. Sadly though, our correspondence consisted of only two e-mails. Mark wrote me the first time to ask me permission to read my blog. His second e-mail was to tell me that he had been busy and wasn't feeling well. We never communicated with each other again, but I didn't lose touch with him. I was in contact with his family. I am deeply saddened by his passing and my condolences go out to his friends and family.
Sunday, June 28, 2009
What little I got to read wasn't very much and I haven't looked at any of the video shots yet. I am in great awe of these men. I wonder if John Marino had any idea of what would come from his vision some 27 years ago. He was determined to do something different and he wanted it to be big. An annual race that has lasted 27 years was probably more than he expected. And while the Race Across America has always been an endurance race, it has also been used as vehicle for fundraisers by more than half its racers.
The Race Across America is not a stage race. You start on the west coast and finish on the east coast when you cross the finish line. Whether you are participating in a two-man team, a four-man team or the eight-man team, you only rest in shifts.
For some final statistics look
HERE. Great Job Team Donate Life (TDL) Liverators.
Thursday, June 25, 2009
Now I have never had an MRI before and all that I could think about was all the awful horror movies I've watched over the years -- the ones where the person goes into the machine and doesn't come out alive, and if they do they are somewhat fragged. Plus I have heard all about the claustrophobia and the "OMG they are so damn loud".
And oh yes, the stories of the giant magnet sucking in all things metal. Looking forward to all this apprehension I must have stared at my underwear for a good minute before I put them on. I turned them over in my hands a couple of times wondering if perhaps there was some metal thread buried in the seams somewhere that I was unaware of. Surely they wouldn't have used metal thread? I thought to myself. Not really, would they? Resigned to the fact that that was just too farfetched I finally put them on. I will just ask the tech, he will probably know.
When Lois and I got to the hospital we were told that they were going to be running an IV for a contrast scan and that I had to fill out a couple of forms. Apparently it takes four forms because there is not enough room on a 8 1/2 x 11 sheet of paper to check off that many Yes and No questions and to make it even harder you have to sign the waiver dismissing them for anything that might go wrong. So of course by the time I go off to get undressed I have forgotten all about my underwear question because now I'm suddenly thinking about all those horror movies.
Now I had done some preparing for this so I thought this should go pretty smoothly. I finally resolved that there was no such thing as metal thread and that science fiction is just that -- science fiction. I'm not going to turn into hamburger. At least I had hoped not.
And then they roll me into the machine and they place some earplugs in my ears and ask me if I can hear them. I looked at the nurse and I nod. "You're going to have to speak when you get in there." I nod again.
I am in there for no more than a minute when I realize I have to go to the bathroom. The nurse behind the wall tells me that this will take 25 minutes. I'm thinking to myself I prepared for this. I just asked to use the the bathroom before I came in here. So I'm lying there listening to the sounds of pings and low firestation blares and all I can think about is going to the bathroom. The recording says: "Breathe in...hold it...(tick-tick-tick)...relax."
The only thing I could think of was what my brother-in-law told me to do. "Just take a nap while you're in there. It's the best thing you can do."
Wednesday, June 24, 2009
I missed out on the first few days but all the teams seem to be doing great. There are 8 eight man teams and the TDL Liverators are in 4th place. I have been pretty excited about this race and I am hoping all the racers do well.
Friday, June 19, 2009
Team Donate Life has played a big part in the Race Across America for a number of years now and has used its participation to raise funds for liver transplants, liver disease awareness and organ donation awareness. The other day I ran across an article in a local newspaper and I saw that two of my doctors (one of them has recently moved to the University of Utah Hospital) are riding for Team Donate Life. They are called the Liverators. Dr. Terry Box and Dr. Ray Thomason have both seen me in clinic over the past year. After reading a little about Team Donate Life and the Race Across America I was very humbled by Terry Box's story and filled with a sense of inspiration. I knew early on that Dr. Box had had his own liver transplant and for that very reason I felt comfortable in knowing that I had a doctor who had actually experienced his own tranplant. What I didn't know was some of Dr. Box's back story until I read this article. At the time I felt lucky to have a doctor who had been through this operation. It was, after all, as hands-on as you can get for being a transplant surgeon. That gave me much comfort when I had questions of my own.
The Race Across America begins in Oceanside, California on June 20 and ends in Annapolis, Maryland. about a week later.
Wednesday, June 10, 2009
Today (yesterday) I sent an e-mail to my transplant coordinator asking about a lab test they wanted done to check my kidney functions. I got an e-mail back telling me to just go get my labs drawn. So I did that. I received another e-mail in the evening telling me my kidneys functions were okay and that my MELD was at 13.
It seems odd that after so long things are beginning to change. Knowing that my numbers have started to move is almost too hard for me fathom after all this time. And even though they've only crept up a little; from an 11 to 13, it shows that something is starting to happen. Once again I find myself torn between two directions. A part of me wants to stay suspended, while another wants to go forward. But I guess I don't really have any control over that. I am still doing well for now. That counts for a lot.
Friday, June 5, 2009
I've been really exhausted these past few days and now I have a cold. Tired + having a cold = Miserable.
Now that the season has changed I've taken to riding the bike around the neighborhood. The other day I did 3 or 4 miles and I cramped up real bad later in the evening. I'm going to have to watch that. I was riding in low gear trying to work my muscles. I'm gonna have to kick it down a notch until I get used to it. The exercise bike in the corner of the living room just doesn't do it. My cramps have gotten a lot better though since I started taking the new medication.
We are still waiting to hear from Arizona about the adoption records. It has been a couple of weeks now. We are getting anxious. We are hoping that this is a good sign; that maybe the waiting is because they are looking. We haven't really thought of any other options yet and are waiting to see what happens with our last petition to the other court. After that, if there is no news then we will try something else.
Sometimes I wonder what is worse. Waiting to get sick or waiting on news from the court. Or in this case the lack of news.
Saturday, May 23, 2009
Somehow the conversation had changed and we were talking about the doctor rotations and who was on-call that weekend. It was his weekend. The Long Weekend he said. At first I didn't get it until my wife mumbled something. I thought he was talking about working a four-day weekend. But that wasn't exactly what he was saying, either. He was saying that this was The Long Weekend. One of them. And then I understood. This was That weekend. The one where people go away and don't come back. Where the interstate can be a very dangerous place to be. Where inattentive or impaired drivers can change the mortality rate. He was saying that this could be a very busy weekend.
I remember feeling a shiver run down my spine as that realization hit me. For some people a weekend like this could be a good thing. A new lease on life. And for other people it could be devastating. So plainly put, this information had me wiping tears away from my eyes.
Be truly safe everyone.
Tuesday, May 19, 2009
This drug may cause drowsiness, dizziness, blurred vision, headaches, itching, running nose, watery eyes, bleeding, diarrhea, muscle pain or cramps, vomiting, restlessness, dry mouth, unusual thirst, unusual tiredness or weakness, or rapid or irregular heartbeat.
Most of us have heard these symptoms being mentioned on T.V. ads for medicines during the evening hours. They are listed as cautions and side effects on pill bottles. Do not take this medication if you have Blah Blah Blah Blah Blah Blah Blah. Ironically though, most people going through liver failure experience all these effects even without taking medication. That is because they are some of the first indicators of liver failure. Even as our doctors prescribe new drugs to help us feel better and treat our illness, we are never entirely rid of any of these symptoms. While one drug may be designed to help us with tiredness, another may be designed to cause diarrhea. No matter what combination of drug therapy our doctors use, we will continue to present with most or all of these symptoms as we wait for a liver transplant.
I have been listed now for almost 9 months. Even though I continue to slide down hill and I wait for my health to deteriorate, I know the drugs I am on are working. The stomach aches I used to have were more frequent, but they have subsided somewhat. That is because I eat better and I have cut back on the sodium. I thank my wife for seeing to that. The night and day reversal has really changed a lot. I am still very tired throughout the day, but I don't stay up until 3 or 4 in the morning anymore. That means the lactulose is working and I'm doing my job by taking it. I've also had to take a little responsibility on my part by making myself go to bed at a normal hour. I used to take a sleeping pill, but now I am on a muscle relaxer that I take for my cramps and it works like a sleeping pill.
My biggest worry was exercise. I didn't feel like I was getting enough. The other day I wore a pedometer to work to see just how active I was during the day. I read the average steps per day run between 5,000 to 10,000 steps. Most people don't even hit 10,000. I hit over 20,500 on a fairly busy day. My slowest days are around 16,500 and 18,000. I have still not had a busy day at work yet. I suspect I can hit around 23,500 to 25,000 steps on a good active day. That made me feel pretty good about the bike I've been ignoring that's sitting in the corner of my living room. I still need to try and work on exercising on my days off. Taking all this into account and the fact that I have my bad days, I think I'm doing pretty good still. But I am definitely moving slower and the muscle mass is slowly wasting. And it is getting harder to take a deep breath.
Feeling healthy physically is one thing, but feeling healthy mentally and spiritually is just as important. It is these last two things that I must never forget. Especially the last.
Monday, May 4, 2009
Tuesday, April 28, 2009
Today I had another endoscopy and they found some minimal bleeding. I talked to the doctor about my ascites and he upped my dosage of the water pills. Before we even start thinking about a paracentesis procedure or the TIPS we are going to stay on the diuretics. He also upped my beta blocker because I have portal hypertension symptoms that can cause more bleeding. The beta blocker worries me just a little because any sudden movements or getting up too fast can actually lay you down real fast. I will just have to keep that in mind when I am rushing to put out any fires. Which I occasionally do. Because sometimes during my day job I have to put on my cloak and pretend I am superman. I'm just saying...
Yesterday I had a contrast CT scan and my Bubble Echo Cardio thingamajig and I am waiting to hear how that went. Plus they ended up taking more labs to check my MELD score. It seems that when they update your transplant status they don't want to use your labs from two weeks ago. They want them fresh from two days ago.
I am really feeling good with this transplant center. Everyone is very nice and helpful and willing to talk about any of the issues I bring up. Or it could be that I am loopy and under the influence of anesthesia and I am just making this up. Either way I win.
Sunday, April 26, 2009
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.
Tuesday, April 21, 2009
Saturday, April 18, 2009
When Lois and I got married we compared our work insurance benefits and discovered hers were definitely a lot better than mine. I have been on her plan ever since. When we discovered that I was going to need to have a transplant we were happy to find that her plan would actually cover the operation. We also learned that some of the drugs I would need for aftercare would also be covered, but not all of them. Some of them are going to end up costing us a lot.
The other day I got a phone call from the transplant center informing us about our insurance benefits and what they would cover. A drug called Prograf is the biggy. Prograf is designed to lower the body's immune system. While your immune system is there to fight infection, it will also fight against a new transplanted organ such as a kidney or liver because it thinks the body is being invaded. Prograf, along with other drugs, are used to help fight against organ transplant rejection. Apparently I need to find a way to pay for this immunosuppression drug before I can get a transplant. Or else ¿ ? ¿
The transplant center is doing its best and willing to do what it takes to help us out in exploring all our options. But now we have reached an impass. The idea to look into Indian benefits was actually the social worker's thought. A good one. Buuttt... I was adopted and I have no ties with my Indian tribe. I know that I am a Yaqui Indian because my parents said so. They adopted three of us -- two Yaquis and a Pima while they lived in Phoenix. But my case is no different than any other adoptee's. When the adoption is finalized, they reissue a birth certificate that shows the adoptive parents as the natural parents. There's nothing on it that says, adopted.
So I must first somehow prove that I was adopted and then find a way to have my adoption records opened so that I can prove it to the tribal council. And then I might be eligible for Indian funds.Years ago I did a little research on trying to find my natural parents. I wrote a letter to ALMA Society (Adoptee's Liberty Movement Association) and they responded by telling me there might be a loophole in finding my parents because I was Native American.
Adoptees who are of American Indian heritage can learn their original names and names of their birth parents by taking advantage of the Indian Child Welfare Act of 1977.
This law was made for a number of reasons, but the one that is of most importance to me is that my records can supposedly be opened due to genetic and medical reasons. It is a federal law. In my case I am not so much interested in finding my natural parents but rather looking for medical history and acknowledgement from the tribe so that I can apply for grant money so I can show that we can get the Prograf. Without that, there will be no transplant.
Anybody know any adoption law? We're stumped.
Thursday, April 16, 2009
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
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
That is all.
Tuesday, April 7, 2009
Lately I have noticed new things are beginning to happen. I am having a difficult time with shortness of breath. I think I have fluid in my lungs. I will have to see my primary doctor about this. Whenever I over exert myself my chest feels oddly different and sometimes when I'm talking I can't finish my sentences because I run out of breath. My cramps still come and go but I found that if I slip one of those elastic knee braces over my calves at night I don't get any cramps. This seems to work. Life is good.
Oh yeah, and next week my wife is having sinus reconstruction surgery with follow ups for the next six weeks. Thank heaven for insurance.
Tuesday, March 24, 2009
(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.