Transplant Athlete
Casey Is Evil
I've been fascinated with the Caylee Anthony case. I tune in to Nancy Grace nightly to get updates. In case you haven't heard about it, here's a rundown:
The Players:
- Caylee Anthony: Missing Toddler, just turned three.
- Casey Anthony: Mother of Caylee, Liar, Loves a good party
- Cindy Anthony: Mother of Casey
- George Anthony: Father of Casey, formerly in law enforcement.
Casey and Caylee had been living with George and Cindy, but several months ago, Casey took Caylee and left. George and Cindy had no idea where they were. When Cindy caught up to Casey, this is how the 911 call went:
"I have a 22-year-old person that has, um, grand theft sitting in my auto with me, My car was stolen. We've retrieved it; today we found out where it was at. We've retrieved it, I've got that. And I've got affidavits from my banking account. I want to bring her in. I want to press charges." Cindy can be heard in the background saying, "My next thing will be child's thing and we'll have a court order to get her if that's what you wanna play. We'll do it and you'll never..." In another call, Cindy says to 911 operators, "There's something wrong, I found my daughter's car today, and it smells like there's been a dead body in the damn car."
Police took Casey into custody for child neglect and other charges. A bounty hunter from CA bailed Casey out of jail and last night, Casey was re-arrested for some minor economic crimes. Meanwhile, test results from the car have come back and DNA shows the human remains in the car were Caylee.
It's so obvious that Caylee's dead and Casey knows it. Cindy Anthony is so far in denial that it's hilarious. She now claims that a dead body was placed in the trunk of Casey's car after it was towed (possibly by police or the media). Casey's attorney claims that Casey has a perfectly good reason for not helping police find Caylee. As a parent, there's nothing I can think of that would keep me from helping police find my child (unless of course I had done something and didn't want the police to find out). It sounds like Cindy was threatening to take Caylee away from Casey with a court order, so it's possible that Casey has hidden Caylee from Cindy, but at some point, you'd think whoever is holding Caylee for Casey would crack under the pressure. I can imagine when the truth finally does come out, and it turns out Casey did kill Caylee, Cindy will still claim that someone else did it.
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It's A Whole Sucking Thing...
"Blood starts it, and until the blood stops flowing it'll never stop..." - Dawn
" 'Cause it's always gotta be blood" - Spike
- Joss Whedon's
Buffy The Vampire SlayerFirst thing in the morning, I'm wheeled up to the dialysis clinic on the 10th floor of the hospital. I'm really nervous because I came so close and was turned away yesterday, but my Nephro is here and that reassures me.
Emily hooks me up to the dialysis machine and my blood slowly spills down the clear plastic tubing. I watch as it travels over to the pump. The pump pushes it over to the dialyzer, the filter pinks up and then turns bright crimson. Finally, the blood completes it's world tour and returns to my chest. The whole thing is surreal. Blood was never meant to leave the body. I think I might be feeling desperation. Face it, all your life, blood leaving the body was bad, it meant a cut or injury. Here I am willingly letting someone spill my blood. There's something medieval feeling about the process when compared to a transplant.
I feel a bit lightheaded, maybe it's the beginning of a headache? I can't tell, but I do know the feeling is weird. Maybe I'm just freaked out by all the blood that's not in my body. Maybe the dialysis is doing it's job and I'm feeling the effects of cleaner blood...
With the transplant, my blood went from toxic to normal overnight. The change was really noticeable. This first dose of dialysis is by design very mild. They want to make sure I don't have an allergic reaction to the filter used in the process. The mild treatment makes it really hard to notice any difference.
I watch Be Kind, Rewind on my laptop during the procedure. Jack Black is hilarious and he keeps my mind occupied for the 2 hour treatment. I can feel the eyes of the staff on me as I laugh uncontrollably. Just like yesterday, I seem to be the only dialysis patient with any life left in me.
Mos Def, Danny Glover, and Jack Black wrap things up on my laptop as Emily flushes saline into my tubing. The saline flushes my blood through the pump, then over to the filter and gradually the tubing leading in to my chest clears up. She unhooks me and gets me ready to go back to my room. I sit up slowly, thinking I'll be light headed, but I feel fine. I don't feel wiped out.
Breakfast is waiting for me in my room, it's super cold and what I thought was grits turned out to be oatmeal. The French Toast is actually one slice. Luckily, lunch will be in an hour. The nurses keep giving me blood pressure meds all day long. My blood pressure has been high, is high, and will be high for the forseeable future. Dinner is similarly unfulfilling, so I nicely ask the nurse if I can go to the cafeteria for food. She lets me go and I walk down in my pajama bottoms and hospital gown.
"Blood is life, lack-brain. Why do you think we eat it? It's what keeps you going. Makes you warm. Makes you hard. Makes you other than dead..." - Spike from Joss Whedon's Buffy The Vampire Slayer
Labels: Be Kind Rewind, blood, Buffy, dialysis, Jack Black, Spike
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Inova Fairfax Day One
As I was waiting to sign in to the hospital, a middle aged woman walked in to the registration area carrying a takeout tray of food. She had signed in before me, and then had walked off for food. When her turn came to meet with the admitting person, she started whining like a child. She had been there from 10 to 6 yesterday waiting for a bed. The "chinese" doctor who had admitted her was no longer there and was no longer her doctor, she was hungry and had left for food. She was very nearly crying. The admitting person calmly asked questions and determined that she had a bed and had left her room (I'm guessing from the psych ward). The crazy lady walked out of the office and then started to tell me her life story, beginning with her day yesterday; by the way, did I want her food because she had barely touched it; and all she really needed was a beer (did I mention it was 8:15 am?). She then wandered off and was soon chased down by the admitting person and a supervisor.
I was starving and had asked for a breakfast tray as soon as I got to the room. I met with my Nephro, then I ate and was immediately taken up to dialysis. My Nephro met me again at the dialysis clinic, it was a good thing too, I was really nervous and it was very reassuring having him there.
It's one thing to visit a dialysis clinic or to read about the process, it's quite another to actually be wheeled in to a room full of machines that are whirling, pumping and beeping away. The staff go about their work in a serious fashion, but they make light hearted conversation to diffuse the tension. They explain every step of the way to reassure and calm me.
Across from me is an old man who looks like he's dying. Along with dialysis, he's got an IV and what appears to be a feeding tube; he alternates occasional convulsions with low moans. His mouth is wide open and his eyes are shut tight. Next to him is a younger man (still older than me) who also appears out of it. His eyes are open, but often they roll up into his head and all I can see are the whites of his eyes. Physically, his body looks healthy, but he moves less than the old man and seems just as near death. I secretly want to ask my Nephro if I'm staring at my future.
The nurse hands me a needle and tells me it's the smallest they use. It looks three times larger in diameter than any needle I've ever been stuck with and about twice as long. They keep telling me how much its going to hurt. They give me a shot of lidocaine to numb the area first. One of the staff recommends against the lidocaine, because I won't get it later, and he thinks its better not to get used to it. The nurse gently tries to insert the huge orange needle into my new fistula, but she immediately has a problem. The walls of my vein aren't strong enough yet. I'm grinding my teeth trying to will the pain into submission. It's not working and long after the needle has been removed, I'm still in pain.
Since the fistula isn't ready, I must get a permacatheter placed in my chest for access, unfortunately, since I had breakfast, they won't be able to do the surgery until my stomach has had a chance to clear. The Interventional Radiology department wants to do the surgery tomorrow or the day after, but my Nephro won't be able to justify the extra days to the insurance company, so it has to happen today, IR relents and schedules me for 5pm.
I'll be missing lunch, but I should be able to get dinner. I'm wheeled down to IR Pre-Op just before 4pm, so I'm thinking maybe they'll get me in and out quicker, but no such luck. I fall asleep waiting to get moved into an Operating room. I'm wheeled into an operating room well after 5pm. They take my necklace and my glasses, shave my chest, and give me Oxygen and possibly something else. It appears that they are giving me a little bit of Anesthesia, checking my state, then giving me more, so I try to stay coherent as long as possible, in the hopes they will really knock me out. There's nothing. Then I feel needle sticks. More nothing, then I feel the painful incisions. More nothing. Then pressure as the catheter gets placed. It feels rough and painful, but once it stops I've fallen back into nothingness. I spend the next hour trying to shake the groggy feeling.
I was able to get dinner, which is a good thing, I don't do well on an empty stomach, but the portions weren't as filling as I'd like. A couple hours later, I was hungry again and had the nurse bring me some snacks.
Labels: Catheter, dialysis, inova fairfax hospital
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Dialysis Tomorrow
With two emergency room visits, and perpetually big feet, I'm well aware that it's time for dialysis. When I went to see my Nephro last week, I found out my creatinine was 9.8, basically at the 10 threshold for dialysis we set last year. I told him it was time. The first time around when my kidneys failed, I resisted, but this time, the writing has been on the wall.
So, I'll be going in to Inova Fairfax Hospital for three days to start treatment. From what I understand the treatments will be very mild, they don't want to give me a full dose of dialysis right off the bat. I'm guessing that they want to keep me in the hospital so they can monitor my intake and output more closely. My blood is getting pretty toxic right now, (just a little bit dangerous), so maybe they want me at the hospital to monitor my other organs. There's also some question as to whether my AV Fistula is ready, so they may need to surgically place a catheter to start.
I'm still not sure what this means for my everyday life. I know I'll be going to a clinic three days a week (every other day). I know I'll need to follow a stricter diet. I don't know how much exercise I'll be able to do. I don't know what my energy level will be like. The list of side effects and possible side effects of dialysis is too long to list here.
I was just as scared and just as clueless when it came time for my transplant, and I was pleasantly surprised by the results, so maybe dialysis will also surprise me. Either way, I'll adapt.
Labels: dialysis, inova fairfax hospital
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New Look
You may have noticed the new look of the website and the blog. We hired SoFla Web Studio to give the site a facelift. The original site was built by the Transplant Athlete with HTML and there were many aspects of it that he was unhappy with. SoFla Web Studio was brought in to fix those flaws and you can see the final product looks great!
Along with the facelift, we are also adding functionality and SoFla is making it work.
Labels: SoFla Web Studio, web design
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Struction Zone
When we got back from the funeral, I was quite overwhelmed; an item I ebayed turned out to be missing parts, my contractor was two days behind schedule because I didn't get the demolition done, and I had a ton of work to catch up on, to top it off I received an email from a UMCA Board Member that pushed me way over the edge.
I started the demolition and quickly had the kids bathroom gutted. Q helped significantly. My landscape looks way redneck, with a couch out back and two toilets in the front yard. I couldn't bring myself to throw the toilets in the dumpster, they still work, there must be someone out there who needs a new toilet. I also saved as many bath tiles as I could. I didn't want them entering the waste stream. I guess I'll try putting them up on Craigslist.
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600 Mile Tank
WOW! I just filled up my CAV. I got 42.6 mpg on this tank of gas. That is amazing. That's better than the best highway mileage I ever got with the car. That's nearly 200 miles more than I would be getting without the
Hypermiling techniques. At today's gas price, that's $23 saved. I'm not sure if I can improve on that, but I'll give it a try.
Labels: Chevrolet Cavalier, hypermiling
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My World Was Off Its Axis
Sorry for the long break in posts dear readers. My grandpa's passing hit me hard and I still feel like my world is a bit off kilter. I was named after him and as a kid, he was always "Big Lou" and I was "Little Louie." My grandma would yell at him, "Lou go for bread," He'd nudge me and say "Which Lou," with a twinkle in his eye. My grandma would feign annoyance and repeat, "Big Lou."
I spent four days in NJ for the funeral. My grandpa was a funny man, but not haha funny. He served in WWII, but he apparently gave the MPs as much trouble as the Germans, because he left the Army the same rank he entered...Private. That's what you get for sluggin' a Sergeant. He worked two jobs to support his family, often times, he'd be home long enough between jobs for a smoke break and not much else. I guess it's important to tell you he had four daughters, so maybe he was just trying to get away from all that estrogen. One of his favorite jobs had been working as a truck driver, at times he did incredibly stupid things like driving with no brakes. His other favorite job was operating a forklift, but mostly because "they" called on him to get a forklift in and out of places it shouldn't go...He started smoking when he was in his early teens and quit cold turkey in his 50s without a patch, gum, hypnotism, anything. He drank beer, but loved a shot of Scotch now and then.
He had 10 grandkids, I was the first, Andrew was the last. He has a dozen Great Grandkids. His father (an italian immigrant) lived to be 93 and I have vague memories of going to visit him. I had always thought my grandpa would live into his 90s, like his father. My grandpa was a bit racist, but I think he used to say those things to get us upset more than any internal meanness. Eventually, as he aged, it seemed more and more like he just didn't know how to censor himself or more accurately, didn't censor himself enough.
In the end, like Kenny Roger's Gambler, my gramps had himself a shot of scotch and died in his sleep.
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Grandpa Died
I just found out my Grandfather died. I called him a couple of weeks ago and he sounded like crap. He said he was getting over a cold. I called him a couple of days ago when they found out it was Pneumonia in both lungs. He refused to go to the hospital, so they had all his medical supplies shipped to his house. He was responding well to treatment. I can't believe he's gone.
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Why Would I Need 25 Percocet Tablets?
After my little Ambulance ride on Tuesday, I knew that the surgery for the AV Fistula had to go through. My creatinine was 8.9 at the hospital, which means I could go in for Dialysis anytime I feel like it. I was hoping to wait until my creatinine got to 10, but this excess fluid that's interfering with my breathing might make me go sooner. If I had wanted to, I could have gone on dialysis a couple of months ago. My surgery had been scheduled for a month now and there was no way I was walking out of there without it, no matter what my hematocrit was.
ABL took me to the hospital, everything went smoothly. Dr. C.W. Lee redid my plumbing, and then inserted a balloon up my vein to enlarge it a bit near the inside of the elbow. I woke up at the end bandaged up and ready to go home. Funny thing though, they didn't give me any wound care instructions with my discharge paperwork.
Yeah, the stitches freak me out a bit too. Even more freaky? The thrill. The "thrill" is a pulsing sensation, that can be felt as the arterial blood hits the venous blood. If you put your ear up to it, it sounds like you're listening to the heart through a stethoscope.
I did get a prescription for 25 percocet tablets, what's up with that? I think I've used 5 and probably could have gotten by with 3 or maybe just Tylenol. Are they trying to to turn me into a junkie?
Labels: AV Fistula, surgery
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My First Ambulance Ride
So, I've been having trouble breathing in the mornings lately. Tuesday, it was pretty bad. Bad enough I had ABL call 911. They sent an ambulance and a fire truck. It freaked RJ out, but Q slept through it.
I spent the morning in the hospital getting poked and prodded and in the end they didn't find anything. The doctors best guess is that while I'm lying down the fluid is building up in my lungs and making it difficult to breath. That was my guess also, which is why I took some Lasix when I woke up feeling out of breath. His advice: Sleep sitting up.
They discharged me later that day much to their delight (I would have been a real pain if they kept me there longer, so yes, it was to their delight).
I've been sleeping sitting up since then and I've been feeling great in the morning.
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A New Hope
One of the reasons I want to go on Dialysis is to avoid the immunosuppressive medications. I've known from the beginning that Prograf (a drug meant to keep my transplant from being rejected) would damage the kidney. I've also known that being immune suppressed meant I'd be more susceptible to diseases and infections. I'm very grateful for the time I've had with this transplant.
According to one of my doctors, because my MPGN will likely return in any new kidney, the risks to a live donor are greater than the benefit I would receive in getting a new kidney (medically speaking). According to my other doctor, I'm just over the line and the risks to the donor are lower than the benefit to me (again medically speaking). The equation changes however with a cadaveric donor; since they're already dead, there's no risk to them. The question then becomes the risk to me and the benefit. Transplantation is major surgery, which could be fatal, if the life expectancy of the kidney is 5 years, is it worth it to go under the knife?
German researchers have devised a new technique to reduce the need for anti-rejection medicine. I think with new techniques and new medicines, the needle will swing my way and I'll get another transplant.
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DNF UMCA
John Hughes, the Managing
Dictator Director of the UMCA had his contract renewed for 6 years. Part of me is surprised; after all, his recent tenure has been characterized by criminal conduct, lying, unethical behavior, and sheer incompetence. But the other part of me knows he had handpicked the Board for just this moment. If you haven't been following the UMCA Drama check out this
site.So, with great regret, I quit the institution that helped nurture my early interest in Ultracycling. I can no longer in good conscience support an organization with such a corrupt leader. I resigned from the UMCA. So Long And Thanks For All The Fish...
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It's Not All Doom And Gloom Around Here
It's no secret I enjoy going to the US Transplant Games, kickin some @ss, and bringing home some medals. Well, you know I couldn't go this year, but local boy Jon Hochstein picked up the torch and ran with it.
If you think my story is special, check out his. He had a HEART Transplant at age 4, Survived Cancer as a fourth grader, lived through organ rejection a year later...All that before the age of 13, that's too much to ask a kid to handle.
Jon went out to Pittsburgh and picked up a silver in the 1K time trial. I've said it before, the 1K time trial is a very intense event. The difference between winning and losing can be seconds. It's so short you need to go all out, for Jon to take a silver is very impressive. My hats off to you.
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Russian Roulette
It was a beautiful day for a bike ride today; blue skies, white puffy clouds, cool temps, amazing views. I rode with Paul (Maggies Dad) out to Luckettsville, VA. I was suffering the whole way out, but not in the usual way. You see, I woke up at 2:30 AM unable to breath (uh yeah...again, blame it on McDonalds). I had to sit up for 2 hours before I felt well enough to go back to sleep (or so I thought). I dry heaved a bit, sweated profusely, then froze. I was pretty darn close to asking ABL to call 911. I tried to lie horizontally to get back to sleep, but immediately started feeling sick again. I did eventually fall asleep sitting up in bed.
I wasn't any better when the alarm ripped me from my short slumber, but I knew a bike ride would do more for me than taking Lasix would. We had a headwind heading west on the W & OD. I was clearly huffing and puffing at a pace that should have been easy to maintain. I did get better as we went, but that low hematocrit is really slowing me down. After Leesburg, we headed north to Waterford, climbed up Stumptown Road and stopped at the gas station on 15 in Luckettsville. With the cool temps and the amazing views over the Virginia farmland I really felt blessed to be riding. I had restricted my fluid intake to one bottle for the first two hours. That got rid of much of the water in my ankles, by the time we hit Luckettsville.
I didn't want to say anything to Paul, but my chest felt really bad. Climbing back over Stumptown Road, I was thinking the smart thing to do would be to call for a SAG. I thought to myself, "You're pushing it Lamoureux" I had no idea how much stress I was putting on my heart (was it dangerous?). When we got to the Rte 7 bypass, it was like a switch flipped and I felt fine, the pain in my chest was gone. Once on the W & OD, we had a pretty good tailwind and we were able to cruise east at a much higher pace.
It's hours later, and my chest pain is back. Maybe I should see my doctor...
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What My Child Learned In Vacation Bible School
"Tax Collectors are bad...and oh yeah, Jesus loves me."
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