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Transplant Athlete
Friday, July 31, 2009
  Dear Lance Armstrong

Hi, Lance, It's me Lou. You get paid to ride your bike and you love riding your bike. So, I just wanted to tell you that you shouldn't retire, ever. As long as you like riding your bike and you can keep up with the peloton, keep going. With your training, natural talents, and tactical instincts, you could race at the professional level for another 10 years. Anybody who thinks you should get out of the peloton because you can't win is a moron (I'm looking at you Darren Rovell). The only thing I agree with from Darren's article is that you have a target on your back for any disgruntled French Lab technician. There were 156 riders that made it to Paris, would Darren advise 153 of them to retire because they can't win?

Now, I know during this tour you felt like you couldn't keep up with the young whippersnappers, but YOU RETIRED. YOU WERE OFF THE BIKE FOR YEARS. It's going to take some time to get the snap back in your legs and once you do, you are going to be dominant again. Good luck on Team Radio Snack.

Sincerely,
Lou Lamoureux

P.S. I'm riding in the 24 Hours Of Booty, an official ride of the Lance Armstrong Foundation.

 
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Wednesday, July 29, 2009
  KT/V

The measurement that they use to determine how well a person is being dialyzed is KT/v. It seems quite limited to me, because it only uses one actual measurement (urea clearance) multiplied by time and divided by the volume of total body water. I just read an article from "Dialysis & Transplantation" magazine which points out that some waste molecules are larger than Urea and some are smaller (meaning a filter optimized for urea might not eliminate larger molecules very well).

They looked at KT/v versus mortality and found that people with higher kt/v lived longer. Is that enough? Rod Kenley of Aksys lists 16 criteria to determine how well someone is being dialyzed.

  1. Normalized Blood Pressure with minimal antihypertensive medications
  2. Normalized Calcium-phosphate product without binders
  3. Absence of intradialytic symptoms (hypotension, cramps, nausea)
  4. Absence of Interdialytic symptoms
  5. No interference with job
  6. Protein apetite
  7. Neither alkalotic or acidotic
  8. No evidence of LVH (a heart problem)
  9. Hematocrit within 35 to 38 with 50% or less of average EPO dose.
  10. No dialysis or access related hospitalizations
  11. Normal Triglyceride levels
  12. No evidence of Amloidosis
  13. Longest preservation of residual kidney function
  14. life expectancy approximately that of living related donor transplants
  15. Inflammation near normal
  16. global cost to treat no more that $45,000 per year.
That makes a lot of sense to me. Increasing my time on the machine IN-CENTER increased my KT/v (meaning I am healthier), but made my inter and intra- dialitic symptoms got worse. HOME Hemo has increased my KT/V and has already lowered my needs for Antihypertensive medications, my protein appetite has increased, and my inter and intradialytic symptoms have been reduced. By all measures, that means home hemo is better for me than in-center, but that doesn't get reflected in Kt/v.

Just wanted to send out a big "Get Well Soon" to Rich Bobbe. He recently had a heart attack and he's back home. Our thoughts and prayers are with the whole Bobbe family.

 
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Tuesday, July 28, 2009
  NxStage Came Today

My home hemo machine came today, all 24 boxes of it. They say the cycler is 70 pounds and its portable, but this things a monster. I don't think I'll be lugging this thing around much, especially for just a weekend trip, but I think it would be ok on a longer trip. For instance, I'm planning a short business trip to Vegas in September (3 days), I think it would be too much of a hassle to lug this thing on the plane to Vegas. I don't think I'll take it to my parent's house in New Jersey if it's just a weekend trip. But I can see this being my ticket to competing in the Race Across The West or the Race Across America.
 
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Monday, July 27, 2009
  Day 1

I haven't done any "serious" riding since June of 2007. That was the beginning of the end for my transplant. Frankly, riding while on dialysis scares me, but I'm putting all that behind me. Today is the first day of my training for the 24 Hours of Booty. I rode for about an hour at an aerobic pace with some occasional uphill sprints. One thing is clear. I need a big base and I have none. I'm thinking I may try to get my base miles in while I'm hooked up to dialysis. I'll set my bike and trainer up next to the machine, hook myself up and spin for 3 hours a day.

I think I have enough time for 2 four week cycles. That's three weeks of training and then a rest week, then three more weeks of training and a rest week. Since I don't have a lot of time, I can't get very fancy with the training. The course is relatively flat, so I won't have to worry about hills and since it's essentially a time trial I can put out a constant effort I won't have to worry about accelerating to catch a breakaway. So, I'll focus my training on big base miles and some VO2 Max intervals. I'll throw in a few group rides near the end to improve my top end speed.

 
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Sunday, July 26, 2009
  Fountainhead Redux

I went down to Fountainhead today to get one last technical mountain bike ride in before I start training for the 24 hours of Booty. I was hoping that I'd finish the 8 mile loop in under 2 hours and then I would complete a second lap. The first hour was rough, I was sweating profusely since I am not heat acclimated and my heart rate was through the roof. I managed to complete the first lap in 2 hours, but somewhere after Shock-a-billy, I had my chain get sucked up between the wheel and the rear cassette. I got it back on, but noticed that the second largest cog was smashed up against the largest cog in places. It still worked reasonably well, but I didn't want to chance another 8 mile loop of mis-shifting (it was bouncing in and out of gear especially when I really needed it) and a potential chain break (from the stress).

I only fell once. Had a blast.

 
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Thursday, July 23, 2009
  Lance Armstrong Foundation 24 Hour Charity Ride

Hey,
I'm riding a charity ride for the Lance Armstrong Foundation, so if you know someone who has been affected by Cancer, consider donating through my fund raising page. I'm looking to raise $500. Yes, I know this is a modest sum, but every little bit helps.

Thanks in advance,

Sincerely,

Lou Lamoureux
  Link
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Wednesday, July 22, 2009
  "You've Got Your Next Patient Lined Up, Right?"

"Uh no, not yet."
"You might want to get on that."

Home Hemo Training is going very well. Placing the needles is a lot less painful when you do it yourself, I wish they'd told me that earlier on. When I started on Monday, they dumped a ton of 3 ring binders and paperwork on me. I was able to get through most of it Monday night and finished the rest on Tuesday. They started quizzing me on the material on Wednesday. I think Thursday we'll cover possible complications and emergency procedures. It's supposed to take 3 weeks to cover all this material and we've done it in one week.

They won't graduate me early, but they are very impressed. Honestly, my home entertainment system is much more complicated to wire up and operate than the dialysis machine. I'm really looking forward to the freedom this NXSTAGE dialysis machine will provide. Already I can see a benefit, the treatment times are shorter, so it's much easier for me to tolerate. I don't care that it's more days per week, what matters to me is how long I'm stuck in the chair. Four hours in a chair at the dialysis clinic feels like forever.

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Monday, July 20, 2009
  I Hurt Myself Today

"To see if I still feel
I focus on the pain
The only thing that's real
The needle tears a hole
The old familiar sting
Try to kill it all away
But I remember everything"

Thanks Trent

Today was the first day of Home Hemo training. ABL stuck me first for the arterial line and it hurt pretty bad. I'm pretty sure she went through the vein, the tech teaching us backed the needle out and reinserted it. I got mine in on the first shot and it didn't hurt as much. Apparently, slow and gentle is the way to go.

I could "taste" the difference between this machine and the in-center machine. It was a very weird sensation. Everything calmed down though and the treatment was uneventful. We only took off 3 kilos even though I was 4.5 kilos heavy. I can normally handle the removal of up to 5 kilos, it's not good for the body, so they like to do a max of 3 kilos. We'll get the rest off tomorrow.

I found some good chestnuts among the literature.
"It was rapidly determined that once weekly dialysis was fatal and twice weekly dialysis just took longer to reach the same outcome." Can you imagine being the first person to do dialysis?
Doctor: We think once a week should do it.
(Two weeks later patient A dies)
Doctor: My bad, maybe we should try twice a week for the next guy.
(4 weeks later patient B dies)
Doctor: My bad, maybe we should try three times a week for the next guy.
(Patient C survives)
Doctor: Finally success! you're still alive. Ok that will be the new standard three times a week.
You'd think they'd start at seven days a week and work down to 3 days a week. The brochure with the machine cites 131 studies that show more frequent dialysis is better for the patient.

The User's Guide for the Dialysis machine says that the pumps "may produce electrostatic charges" during operation...lucky for me, they are not hazardous. Although this ominous warning pops up later: "Non-Medical electrical equipment should not be used within 6 feet of the NXSTAGE System One" "such as a TV". And the warning was repeated, "Do not touch the NXSTAGE System One and and electronic device (such as a TV) at the same time." I'm wondering if I'll be able to use my laptop because there is also a "Recommended Separation Distance" for devices that emit RF signals.

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Sunday, July 12, 2009
  Trusty Litesteed

I asked my doctor to switch me off my main blood pressure Medicine Catapres. It works like a charm at getting my blood pressure down, but it also leaves me fatigued to the point that I'll take a nap or two during the day. First of all, I feel like I'm killing time instead of living. Second, I feel like I'm cheating my kids. I lounge on the couch when I should be teaching them something or supervising their outdoor play. So, I asked the Doctor to switch me off. I tapered off the Catapres and for 3 glorious days, projects around the house got finished, my kids were happy, and I stayed off the couch; but inevitably, my blood pressure creeped up to dangerous territory. I started Lisinopril at the lowest dose and within a few days, I was back worshiping my couch.

I talked with my doctor about it and in his mind the only solution is to rotate through all the blood pressure meds until we find one that works. He asked me to check my blood pressure at home. I hate that. When Doctor Goel used to ask me to check my blood pressure at home, it made me think she was stupid. But my guess is they were giving me "makework" (defined by answers.com as "work of little value to keep someone from being idle").

If you were to plot my blood pressure you'd see that it fluctuates in a channel or range, meaning it's at it's lowest when I leave dialysis. then it gradually rises until I get dialysis again. There are no wild fluctations or outliers. It's at it's max when I go to dialysis. I've explained this to the doctors, but they keep asking me to take my blood pressure on my off days. It's like asking me to take my pulse. Well, my pulse ranges from 72 to around 200 (if I'm racing).

Anyway, I guess my point is they have enough data points from all the readings that are taken during dialysis.

So, I took myself off the Lisinopril and when my blood pressure peaked again yesterday, I went for a bike ride on my Litespeed. It's been about a year since I've ridden the road bike. I felt wicked fast, and very unsteady. (when I built up the Litespeed, I used the thinnest handlebars I could find to reduce the air resistance, versus the really long bars on my mountain bike). I would cruise really fast for awhile, then I'd feel nauseous and I'd slow down, this pattern repeated several times into Leesburg on the W&OD. When I got into the center of town about an hour's worth of riding, I turned around to head for home. I got a couple hundred feet down the trail when I felt so dizzy I thought I would pass out. I plopped down on the edge of the trail and had a powerbar and some water. Everyone passing asked if I was ok, so I backtracked about 20 feet and took a side trail and walked about 20 feet in, then I called my wife for a SAG, and then went to sleep on the grass. About 20 minutes later, my wife called and I arranged for her to meet me in Leesburg. I was still dizzy at this point, but I felt I could ride to a nearby convenience store. Thirty minutes later, my wife was lost in Leesburg, so I rode up to Rte 7 and headed for 15, hoping to make myself easy to find. Eventually she found her way out. From there, she dropped me off at dialysis. My blood pressure before the ride was 170/100 and after the ride 150/90.

So. I'm back riding to reduce my blood pressure. When I go on home dialysis, it'll be roughly 4 hours a day for 6 days a week, I don't think I can do that much time chained to a lazyboy. I asked my doctor and he said it would be ok for me to try to ride a stationary bike for part of that time.

 
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Friday, July 10, 2009
  BMX

I had a BMX bike with Mag wheels when I was a kid. It was the late 70's. I loved that bike. Eventually, however, I outgrew it and it ended up at my grandmother's house. She kept it locked in her shed for years and long after my grandmother passed, it moved with my grandfather to South Jersey when he moved out of the house he helped build for my grandmother. My grandfather passed away and the bike went to my parents house. Recently, I brought it down to VA and today I started restoring it.

I sanded a layer of what I can only describe as oxidation off the wheels. The axles are a little damaged, so I'll probably need to get replacement parts when I take it apart, I may take it to a shop to have that done. It's careful greasy work and I'd rather not do it. I'm going to strip down the frame and Q picked out two different colors to paint it (lilac and silver- ewwww). Unfortunately, she also picked out tassles for the handlebars.

The seatpost is most likely welded to the frame, we'll see. There's a lot of rust on this thing.

 
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  Pizza Night

Last week, our pizza stone shattered. It was a hand me down from my mom. I used a new one tonight and once again made insanely good pizza. The dough and sauce were scratch made. I also made a hotdog and beans pizza. A long time ago, I was traveling in Cali and had a hotdog and bean pizza at some restaurant and it was pretty good. I've been jonesing for one for a couple weeks now.
 
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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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