Transplant Athlete
Saturday, October 31, 2009
  Hugo Nogo

Will somebody please send Hugo Chavez a copy of Atlas Shrugged?
Thank You.

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  The Principal's Office

I got called in to the Principal's office a fair number of times when I was a kid. I remember the first time. I was arguing with a kid on the playground at Long Pond School in Andover. It was over a kickball game, I was manning second base and had tagged the kid out. He balled his hands into a fist and looked like he was going to punch me, so I punched him first (this was early in first grade). I got sent to the Principal's office (Mr. Porstra). He sat me down and lectured me on why fighting was a bad thing, then he told me that he had written a letter (he showed it to me) and that it was going in my permanent record. (insert dramatic music here). He placed the letter in a manila folder. If you're an adult reading this, you know how absurd the permanent record sounds, but it carried a lot of weight back then.

My dialysis nurse is now threatening me with letters that are going in to my 'permanent record'. LOL.


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  Rough Time

A little over a week ago, ABL and I found out that we lost a baby. ABL was 12 weeks pregnant, this would have been our 4th child. Several hours later, we found out that our friends lost a 2 month old baby. The baby was lying on a couch and suffocated. A couple days later, I was in at the dialysis center and was told my lab values were all out of whack, most likely because I was only averaging 5 treatments per week when I was supposed to be doing 6 treatments per week. A day later, I found out that my mom's cousin Sammy had a heart attack and died. I decided to bring my dialysis equipment to New Jersey for the funeral for two reasons. One, I wanted to take a short trip with the equipment to make sure I could do it. If it turned out that I left something home or was unable to dialyze properly, I'd be home again the next day and could visit my home clinic to get fixed up. Two, I wanted to make sure I got my 6 treatments in.

Dialysis didn't go smoothly in New Jersey. I'm not sure what happened, maybe my scale got knocked around, I don't know, but I must have taken off too much fluid and I ended up passing out. I had my mom supervising (ABL was unable to make the trip) and she freaked out. She called my Aunt Toni who came running. I was able to stop the dialysis and give myself saline. I dialyzed for another 20 minutes or so, but I just didn't feel right, so I pulled myself off early.

I told the dialysis nurse about the incident and now I'm getting called in to a meeting with the Nurse, the director of the dialysis facility, the doctor in charge of the dialysis facility, and my nephrologist. They want ABL to take off from work to attend.I made a mistake and I'll admit it, but the incident was handled the same way it would have been handled had ABL been there. I won't do it again.

I have a big problem with this meeting they want me to attend, it sounds suspiciously like I'm getting called in to the Principal's office.


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Sunday, October 18, 2009
  I'm Thinking Of 3 Sports

I'd like to give Triathlons a tri. I haven't swam longer than a pool lap in probably 20 years. I haven't run more than a mile in probably 20 years. The problem I've come across so far is most of the triathlons I've researched are already full. Have you seen how much these events cost to enter? It could easily be a $200 entry fee for a shorter distance event. Ironman Lake Placid entry fee, if they had general admission spots open $550, the only slots they have left are $1100. OUCH.

I think I can handle the bike portion of any distance Triathlon, it's the swim and run portions that I'll need to train for. I'd like to do a couple Sprint distances (750m swim, 20km bike, 5km run) and top my season off with a Half Ironman (1.9km swim, 90km ride, 21.1km run).

What else is on my calendar? Well, I feel good enough to head down to Florida in February for the Sebring 24 Hour event. I'd also like to complete a brevet series this spring (200k, 300k, 400k, 600k). Possibly the National 24 hour event in Michigan in June.


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Tuesday, October 13, 2009
  Improving Patient Access And Choice In Medicare's ESRD Benefit

I got a call from the Social Worker at my Dialysis Clinic. They needed a patient to testify before a Senate Subcommittee. They'd send a car to pick me up and even babysit my child. It was important enough to them that they asked me to reschedule a visit to the vascular access center so I could attend.

In reality, it was more like the talks I used to give for the NKF. Staffers were encouraged to attend by the lure of a free lunch and the chance to meet Alonzo Mourning.

Senator Brownback was first up.

Then Alonzo Mourning

John Davis, the CEO of the National Kidney Foundation, spoke about a problem with Medicare. Medicare pays for Dialysis and they'll pay for a transplant, but it only pays for 3 years of the anti-rejection meds. When that 3 years is up, many patients find themselves with no way to pay for the medication, the transplant fails, and then these patients go back on dialysis. Dialysis costs much more than the medication, so Medicare would actually save money by paying for the transplant meds longer.

Kent Thiry, the CEO of Davita, also spoke.


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Monday, October 05, 2009
  NVRacing Family Adventure Race

I found out about this event late last week and Q immediately wanted to do it. All we knew about it was what was posted in the description...it was family friendly, Q was old enough to participate, and it required 3 - 6 miles of running with "mystery challenges" thrown in. The weather was perfect for it.

We were given maps of the Lake Accotink area and were told that there were 11 billboards with unique codes scattered around the property. We had to write these codes on our "race passport". There were also 9 checkpoints scattered around the area. These checkpoints looked like Chinese lanterns and hanging from them was a hole puncher. Each hole puncher punched a unique pattern. We had two hours to complete the course and for every minute past that, we lost our highest value checkpoints. Each billboard was worth 1 point. If you got them all, then their points doubled. Each checkpoint was worth anywhere from 2 to 5 points.

Q and Maggie at the start

When the race started, Q and I immediately headed south to get the points that were off the main loop. Then we backtracked to the loop. We went around the lake counter-clockwise. I didn't listen closely enough during the pre-race meeting, otherwise I would have heard that Checkpoint #7 didn't exist and that Checkpoint #6 was about 3/4 of a mile away from it's position on the map. I got hung up looking for these points in the locations listed on the map and I blew through about 20 minutes.

The loop is almost 4 miles, by the time we got to the farthest point, Q was dragging. I gave her a powerbar and made her drink, but I had to carry her a couple hundred feet to the nearest billboard. The checkpoints were off the trail, so I had her wait on the trail while I punched our passport. I ended up carrying her another 1/4 mile on surface streets. We were really running short of time, so I was pushing her hard. I carried her for another 1/4 mile and when I put her down, she slipped and her knee hit the dirt really hard and broke the skin. It was downhill from there. We had 10 minutes to cover the last mile and I probably carried her for half the distance. I pushed her so hard she started crying. Because we were late, we missed Checkpoint #9 and we finished 4 minutes late, so we lost a few of the checkpoints we had scored.

They supplied lunch, but Q wouldn't eat any of it. We had invited Maggie and her father to the event and they placed third in the 6-7 female age group.

We placed Fourth in the 6-7 female age group. Luckily, they gave out medals to everyone, otherwise I would have had one pissed off kid to deal with. They held a raffle afterwards and I won a $50 gift certificate to Dick's Sporting Goods and Paul won an IPOD shuffle. While we were waiting around at the end, the pain set in my legs. I was running with her on my shoulders and my legs were now telling me that was a bad idea. 24 hours later and my legs still hurt.

The best part was spending the day with my daughter, although she doesn't see it that way yet.

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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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