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Transplant Athlete
Friday, May 30, 2008
  This Guy Rocks!

Louie Buentiempo of Bakersfield, CA decided to ride to work for the month of May. His commute is 42 miles each way, that's 6 hours a day on the bike. So far, they've saved a couple hundred dollars that would normally be going into the gas tank. Good for him.

Speaking of rockin' bike commuters...ABL rode to work two days this week. This was her first week back from Maternity Leave. Go ABL.

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  Disabled Cavalier

While my car has been disabled in the driveway, the Port Authority NY/NJ believes it went through the lower level of the George Washington Bridge without paying the EZPASS. That's a neat trick, obviously the car fixed itself, drove itself up to the GWB for no apparent reason (is there a Chevy plant up there?), drove back home and died again and forgot to pay the most expensive toll of the trip or they screwed up reading the license plate on the toll photo.

The toll is $8, but they tack on a $25 fee; which, since this is a first offense, they will waive if I pay within 15 days (it spent 5 or 6 days in the mail). My aunt has had this happen to her several times, she says it's a great big hassle. They lose the paperwork and give you the run-around until you just give up and pay it. Not me, I'll never pay.

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Thursday, May 29, 2008
  1995 Cavalier

So, my Cav has been sitting in the driveway for a month and a half now. I've been too sick to work on it, but ABL is going back to work and she won't be able to ride her bike there everyday, so we need a second car. So, out of necessity, I dragged my sorry butt out of the house and went to work getting the front end in the air. I was so weak, I was resting between steps. Pull out the floor jack, rest, pull out one jack stand, rest, pull out the other jack stand, rest, jack up the left side, rest, put the jack stand in position, rest, move the jack, rest...It took forever. When I finally got the front end in the air, I spent over an hour trying to get a reading on the voltmeter. Yes, it's been a long time since Stevens Tech. Mental note: Battery puts out DC and Alternator puts out Alternating current...

I eventually diagnosed the faulty Alternator, and spent the rest of the day trying to figure out how to get it out. My Haynes manual covers approximately 10 years worth of Cavaliers with at least three different engine combinations, with 3 different power levels, so as you can guess it can be pretty vague in spots. The tension pulley looked nothing like the manual described and took several hours of Googling to determine exactly which one it was. Apparently, since the 1995 model year was the first of the redesign, some things were "improved" on the future versions. Around mid-day, I gave up looking for the pulley and collapsed inside the house. I seriously thought a trip to the ER was in my immediate future.

After a night of reflection, and more googling, I was determined to get that Alternator out. It was a slow process, but I got it out and ordered a new one on-line. While I was lying in bed, I realized that the alternator (with 200,000 miles on it) probably just had worn out brushes. So, in the middle of the night I sprang out of bed and hit the web, the brushes are just $2 versus a new alternator at $100 so I figured I would take a look at the inside to see if it was repairable.

The Haynes manual says they are not user serviceable, but I fixed an electric lawnmower once by fixing the brushes. I took it to Advanced Auto Parts because they say they check alternators and all they said was "it doesn't work". The brushes are just a $2 item, but if the diode inside went bad, that's a $40 part. I may still take it apart if I get the energy, but for peace of mind, I just may use the new one.

I got the latest issue of Consumer Checkbook Magazine and they found the prices among area shops to replace an alternator ranged from $280 to $650, so I think I'm ahead of the game.

While the car was up on jacks, I replaced the spark plug wires (hopefully I did that right). I think my next project will be to replace the wheel bearings (front and back), I'll also check the drum brakes in the back, and I'll probably take the car in to have the head gasket fixed by a professional. Assuming it starts after I replace the Alternator. Did I mention I love this car?

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Tuesday, May 27, 2008
  Dialysis Access

I saw a surgeon today to talk about him adding a fistula to provide access for dialysis. Basically, they will be rewiring my plumbing by making a connection between my artery and my vein. It's done up near the wrist, and the vein will then enlarge from the wrist to the elbow, providing a large easy vein for the dialysis tech to stick. I don't know how I'll feel after I start dialysis, but for right now, I'm hunkering down for the long haul on dialysis. I just don't want another transplant right now. I need a break from the meds.

The fistula can be damaged by trauma, which he described as grocery bags strapped over the vein, or volleyball impacts to that area. He felt that swinging a baseball bat might cause some damage to the fistula (So, I can forget that career in the bigs), but as long as the activity doesn't squeeze the vein it's ok.

I left his office really depressed. This past week has been really rough mentally, I can function, but I run out of steam real fast. So, I've had to rely on others to do the work I've done in the past. It's hard to step aside and let my wife lift a cooler, or watch my mother-in-law move a table, or ask my dad to go get the car because I'm too tired to walk the rest of the way. It's just wrong, like I'm not useful anymore. Then to find out today that there will be things I can't do, just added to that feeling of shame.

I watched my gramps go through this transformation. He went from a strong man with terrific endurance to a wheezing emphysemic (long time smoker). There's a slice of time burned into my memory. My grandfather was struggling with a large object. My mother or grandmother told me to help him, so I grabbed it and hauled it into his house. He yelled angrily at me "I can do it," as he stood there wheezing. He protested for many years afterwards, but never with that kind of anger, like I ripped something from him. He doesn't protest anymore, he can't walk across a room without wheezing now.

I think that's why I really want to help out with this RAAM. Yes, it could be the last chance I get to crew RAAM, but I want to feel useful. I hope my body doesn't let me down.

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  Prednisone Strikes Again

10 PRINT "CAN'T SLEEP"
20 GOTO 10
30 END
 
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Thursday, May 22, 2008
  God Bless Gene Wilder

"Hold Your Breath,
Make A Wish,
Count to three"

"We are the Music Makers
And we are the dreamers of dreams"

"Time is a precious thing,
Never waste it"

What great delivery.

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  Switch To Cipro

After the last post, I saw my Doctor to get some relief. He switched me to Cipro (750 mg Bid), so most of the side effects from the Tetracycline are gone, but I still feel weak. It feels like I can barely stand. Today I had to sit down in the shower 2 or 3 times before I could finish. Walking up a flight of stairs feels like I'm climbing Wolf Creek Pass.

My Nephro called once last night and once this morning to discuss my blood work from Monday. He was very concerned. My creatinine was 7.3, meaning I'm probably three months or less from dialysis. My other values were way off, and he wanted me to go directly to the ER to get blood drawn and to possibly get some additional medicine, but when I related the vomiting and diarrhea, he said that would explain the crazy results. I'll go in for repeat tests next week and then I'll see the Nephro the week after that.

 
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Thursday, May 15, 2008
  When The Levee Breaks

I've been on Tetracycline for a little over a week, in that time, I've lost approximately 6 pounds. I'm at the same weight I was at the start of RAAM last year, 155; and I'm dying for real food. The antibiotic makes me nauseaus on a daily basis, I've been reduced to soup, crackers, toast, etc. I've thrown up twice. I've had daily diarrhea (as if I needed another medication giving me diarrhea). I've also got what appears to be hives popping up randomly around my body. More disturbing, I've had difficulty urinating, it feels like an issue with my prostate, but who knows.

All this means I had to cancel my trip to Massachusetts this weekend. My Aunt Gaetana is getting an honorary PhD tomorrow, she's also throwing a graduation party for my cousin Amanda on Saturday, and of course the Heidi's Chain Of Hope ride is Sunday. I was supposed to ride with Stephen Bugbee at the event.

I think the scary part for me is that some of these symptoms are the same as kidney failure (rapid weight loss, nausea, etc). Logically, I know it's the Tetracycline, but emotionally, I can't help but think, Is this end?

 
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Thursday, May 08, 2008
  Suweeet!

Check out the straight to DVD Batman movie. Kevin Conroy is a much better Batman than Rhino Romano.

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Wednesday, May 07, 2008
  Amazing New Liver

This is amazing news for Liver Patients. Scientists have come up with a way to filter the blood in an external device in a way that mimics the human liver. It's still in the experimental stage, but in an early trial in China, out of 45 patients who weren't expected to live past 60 days, 20 were still alive 1 year later. Now, a 55% mortality rate might not sound very successful, but the other 44% would beg to differ. There is currently no FDA approved Liver replacement therapy, so those people and many more would be dead without this technology.

This is where Dialysis technology was in the 1940s. Read about the washing machine used for the first dialysis machine here and look where we are now.

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  Tats

These are the tats I would get if I could. I would get the word "Kidney" on my back with "1.0α" on my right and "1.0β" on the left. I'd have the word "Kidney" put on my belly and "2.0" over my mom's kidney and "3.0" over the other when I get it. I'd also put my kids names on my arm (yes, cliche I know). I would have Q go Vertical and RJ and T horizontal intersecting at the appropriate letters. I'd put the Superman symbol on my left calf where Johnny Drama can see it. I'd also put the Donate Life logo somewhere on my chest.

The docs generally frown on tattoos for transplant patients, although I've heard of a few recipients who've done it anyway. Maybe when I'm on dialysis I'll get inked.

 
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  By The Skin Of Her Chinny Chin Chin

Funny note on the Tetracycline bottle says do not lie down for 30 minutes after taking this medication...

So, I logged on this morning to see what had transpired in the world overnight. My drug of choice is CNN. Where the headline was Clinton 'full speed ahead' after Indiana nail-biter. It looks like Obama spanked her in NC, but she squeaked by with a mere 1.787% (around 16k votes) majority in Indiana thanks to a little help from Rush Limbaugh and Operation Chaos.

Readers may remember, I'm a registered Republican, but since my fellow Republicans have decided that Ron Paul isn't for them, I started watching Obama. This year I will no longer blindly search for the big R on the ticket in the general election and vote down the party line. Obama's position on the War, Energy, and the Economy are just what America needs.

I'm glad he's against that stupid tax holiday McCain and Clinton are pushing to save 30 cents a gallon for a couple months to get elected. Imagine the poor suckers that fall for that gumball machine prize, they'll be in for a rude awakening as oil climbs due to the increased demand and the price will jump even higher when the tax holiday is over, talk about slamming the breaks on the economy. You'll have people stockpiling gas just before the holiday ends. There could be 70s style shortages. "Sorry no gas today"

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Tuesday, May 06, 2008
  Great Balls O Fire

or

The Cursa MRSA

I mentioned in an earlier post a rash in my saddle area. I had a week of of suspense waiting for the test results to tell me what it was...The doctor's guess was Bacterial Impetago, but he wanted to make sure it wasn't Herpes. They look the same, but require different treatments. The results came in this morning: Methicillin Resistant Staph Aureus aka MRSA. I freaked thinking it was the flesh eating thing and immediately went to the Internet.

Luckily, it's just a stronger form of the normal Staph infection, my male parts are safe. I saw Dr. Dolcich today to get answers and to figure out the course of treatment. I trust Dolcich implicitly. He calmly answered my questions in a way I could understand. Based on my lab results, he recommended Tetracycline (the same medicine teenagers use to fight acne). I dutifully notified my nephrologist of the new medicine; later, I received a call that they didn't want me to take the medication because it interacted with CELLCEPT, and they wanted me to see an Infectious Disease specialist.

Dr. Schmidt ... Ever see "The Italian Job"? I HAD A BAD EXPERIENCE! Yeah, My balls are on fire, I have medication that fixes it, I'm not going to wait around for an appointment when I trust Dr. Dolcich. So I set my mind to convincing the Nephro that Tetracycline was the right answer.

So, I did some research on the Internet (granted not as good as the information available to doctors), the list of drugs that interacts with Cellcept was a mile long. Tetracycline was listed along with other antibiotics I've received before. I calmly and rationally discussed the merits of Tetracycline versus the risks to my kidney. {Meaning, I kept the Prednisone HULK under wraps} In the end the Nephro saw things my way. I'm glad he did because I was going to do it my way anyway.

After I got off the call, ABL was laughing hysterically. During my conversation with the Nephro, he made an off hand comment about the severity of the infection and I yelled at him, "My scrotum is on fire."

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Sunday, May 04, 2008
  Treatment Modalities

So, there's been some changes to the world of Dialysis, since I last considered it. There are two basic types, but many variations.
  • PD - Peritoneal Dialysis. There are many flavors, but basically, they sew a catheter into your abdomen and during treatment fluid is pumped into the peritoneal cavity. The wastes concentrated in the blood leach through the peritoneum into the fluid which doesn't have any of the wastes in it. When the concentration of the waste in the blood is equal to the concentration in the fluid, the fluid is pumped out and new clean fluid is pumped in. The process is repeated until the blood has been cleared of the dangerous waste products.
  • Hemodialysis also has many flavors, in general, the blood is pulled out of the body, cleaned in a machine, and then returned to the body.

They have their pros and cons. Neither can replicate a kidney, but they both can remove the waste products from the blood. As I mentioned in an earlier post, I'd like to continue ultracycling while on dialysis (24 hour events, brevets, maybe another PACTour).

My doctor recommended Nocturnal Hemodialysis. Normally, you go to a center during the day, get aggressive dialysis for several hours, every other day. With Nocturnal Dialysis, you can go to a center at night, get dialyzed while you are sleeping, this frees up your day, and the longer dialysis is easier on the body. This can also be done at home, but requires a partner. ABL and I discussed it, and she is willing to stick me, so I've got my partner.

The one drawback, the one thing that makes me hesitate is the Fistula. I wrote about it earlier. It just looks so damn gross. Take a look at this one or this one. I'm sorry, but that is plain nasty. I love my body. Sure, I don't have the guns of the Hulkster, but I like the way my arms look. My legs may not be as good as Lance Armstrong's, but I love their curves. I'm not sure if I'm scared, or vain, or both.

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  12:30 And Alls Well

Way back in 2000 when I was recovering from the transplant surgery, I was on high doses of Prednisone. I had a lot of trouble sleeping then too. Back then, I was so obsessed with the Race Across AMerica, I spent these same sleepless nights researching long distance riding, RAAM, and eventually PACTOUR. Tonight reminds me of those nights, prowling around the house in the wee hours, wishing I could sleep.

I wanted to tell everyone how proud I am of my daughter, we went for a bike ride together today. She was doing great, we went about a mile. I was elated to be riding with her. We got to a water crossing and I made the stupid mistake of thinking she could cross it, I should have crossed it myself first, I would have seen how treacherous it was, but I didn't. She got about halfway across, she tried to correct her line, her front wheel slide on the algae and slime on the concrete ramp, and she went sliding to the other side. I should have made her walk it. She's got some road rash and her favorite red flower fell off her basket, but she wants to ride again tomorrow(I mean today).

 
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Saturday, May 03, 2008
  The End Is Nigh

I saw my nephrologist yesterday and things aren't looking good. My hematocrit peaked at 33 at my last visit and is now down to 28. My glucose is a bit high, which is most likely a side effect of the Prednisone...
    Speaking of Prednisone...
  1. Difficulty sleeping (check)
  2. Fatigue (check)
  3. Excessive night sweats (check)
  4. Uncontrollable Shaking of Hands (check)
  5. Shortness of Breath, especially at night (check)

Last but not least, my creatinine has reached 5.6, a level that the Head of Transplantation at Washington Hospital Center said would be appropriate for transplantation. My nephro and I feel that we should use this kidney until it doesn't function anymore, so I'll be waiting a couple more months. In the meantime, I'll be getting access for dialysis just in case. It's an outpatient surgery where they cut open my arm and connect my vein to an artery. I really don't want it, but it makes dialysis safer and easier. The vein grows larger to accommodate more blood flow and it will look like I'm hiding a climbing rope inside my arm. I've seen some on transplant patients that look seriously scary.

I know I keep talking about Kidney Failure in apocalyptic terms and I really shouldn't. This guy Shad Ireland has completed an Ironman Triathlon while living on dialysis. I have so many questions, but I suspect there are no answers. As a transplant athlete, I was pushing the boundaries with my ultracycling habit to the point of amazing my nephro docs. I suspect that as a dialysis athlete, I will again be pushing those boundaries. I wouldn't be able to do solo RAAM, but team wouldn't be out of the question, maybe a transplant team...

P.S. The only good news to come out of my DR appointment? Lipitor is working and my cholesterol is down reducing my risk for heart disease.

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I've gone through kidney failure twice. The first time in 2000, my mother donated a kidney; and again in 2008, I'm on dialysis waiting for a breakthrough in immuno-suppression medicines before seeking a new kidney.

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Warning Signs for Kidney Disease:

  • High Blood Pressure
  • Burning or Difficulty when Urinating
  • Frequent Urination at Night
  • Blood in your urine
  • Cola or tea colored urine
  • Swellig of the eyes, ankles, or feet
  • Lower back pain unrelated to physical activity


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