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Archive for September, 2008

  Last night I received both an email and a call from my CF doc.  I didn’t hear the message, but my wife said it was a flustered voice.  My doc said that she had sent me an email about Boston, but I shouldn’t get too worked up about it.  In fact, maybe I should call her first.  So, I did.

  She had two pieces of information to pass on about the marathon next year.  First, the fund raising requirement.  It’s $3000 for each of us.  That’s a lot, but I had figured it would be at least $2000.  I can do that.  I hit $2600 last year for the Pig, without really trying.  About 25% of that was from my cousin Jill.  She still has the best quote with a donation: “Now this is how to spend your economic stimulus package!”  Thanks again Jill!  I have some ideas for unique fund raising events.  One, which I would love to do, is get a pair of good UK Basketball tickets donated, and auction them off.  I’d think that could get a fair amount of money.  I have some other thoughts, but will have to figure out what I can pull off.

  Along with the $3000, I’ll have to raise a minimum of $900 for the CFF here in Cincinnati to run the Pig.  Again, I think I can do that. I’ll just have to try.

  The second thing my doc had to say was that Mass General wanted to honor me at their pasta dinner the night before the Boston marathon.  They haven’t had a CF patient run the marathon with them in about 10 years, so they are very excited.  I joked with them that I would love to do it, for a $1500 speaking fee.  The doc at Mass General didn’t get the joke.  He’s no fun.

  Well, the fund raising hasn’t officially kicked off, but it will soon.  If you have any ideas, please feel free to drop me a note.  I’m open to anything.

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I Feel Good

  Sunday was a 13 mile long run.  I ran with Ed, Erin, Amye, and Victoria in West Chester.  It was good.  Temperature was about 60, low humidity, and it was fun to run with them.  The course had a lot of rolling hills.  It wasn’t easy, in fact probably harder than Dayton will be, but it was fun.  For some reason, Amye kept pushing the pace.  I think it may have been because she was cold.  But, I heard several times some “slow down” comments.  We would slow down for a little while, but the pace would pick right back up.  We ended up at about a 10:23 pace, but walked about 4-5 minutes for breaks and refuels. 

  It was a great confidence boost for the half in three weeks.  I’m pretty sure that Amye will set the pace, as she’s good at it.  She’s also turned into the energizer bunny lately.  Very consistent, and she just keeps going and going and going. 

  It was also very interesting to see all the signs for Duke Energy to come back and get power restored.  See, last Sunday, we had a Hurricane here in Cincinnati.  Ok, we didn’t have the rain, but we did have 75+ MPH winds.  It was crazy and over 700,000 people were without power.  This morning 9000 were still without power, over a week later.  There’s no way I could have made it that long without power.

  On a CF related note, I hope to attempt to qualify for the denufosol study again within the next week.  I think being back on the Tobi for three weeks will really help my numbers.  I guess we’ll see soon enough.

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  I’ve been in a research study for the past 24 months.  The study was for the drug Aztreonam, which is a new antibiotic.  I love research and feel that it is very important for CF patients to participate.  I just spent two days at the hospital this week, trying to qualify for the denufosol study.  The PFT scale has a crazy high predicted values.  If I didn’t know my actual numbers, I’d think I should be in the hospital.

  Anyway, it really bothers me that most of the adult CF Patients I know don’t do research studies.  Are they afraid?  Are they ignorant?  Or, do they just not understand?  See, research is really great.  I don’t do many Phase I studies, as there isn’t much of a benefit to them.  But, Phase II and III, there is usually a benefit.  In fact, after each round of Aztreonam, my PFT’s were up 5-7%.  That’s a big deal. 

  Over my research career, I’ve received Pulmozyme, Tobi, Cipro, the vest, Aztrenonam, and Gene Therapy.  All but one, Gene Therapy, helped me significantly and eventually made it into the main stream CF care.  As a result of the research, I received all of these drugs early and usually was allowed to continue on them until they went to market.  All for free, in fact, I got paid to be on them. 

  Yes, there are some risks, and you have to balance them.  I have three things I won’t do: Nasal PD’s, Bronch’s, and poop studies.  I draw the line on those.  Too many risks, inconvenience, or just plain embarrassment. 

  So, if you are a CF Patient (especially an adult CF Patient) or a parent of a CF kid, look up some of these studies, and see if you can get into them.  You, or someone you love, may benefit greatly from them.  Vertex VX-770, Denufosol, TIP, and Aztreonam.  Or, find other studies. 

  As my sister told me, if we don’t do the research studies, the technology will never advance.  Yes, there is some risk, but you have nothing to lose and everything to gain.  Research is the only way we or the kids that come after us will ever have a chance at a cure or a long term treatment regimen.

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  Two of my friends, married to each other, are going through some tough marital times.  Out of respect for both of them, I’m not going to go into the issues.  I run with one of them on a fairly regular basis, the other I don’t see as much.  But, they are both my friends.

  I’m really concerned about both of them, and have been thinking about them quite a lot.  I’m truly concerned, and I’m trying to be supportive to both of them.  I have heard both sides of the story, although more from one than the other.  But, I know that the issues are not only on one side.  They have both contributed to the issues, and they both realize that. 

  I’m pretty sure they are going to split up.  In fact, I think that’s been going on for quite a while.  It really makes me sad.  I love them both, and would love to have them stay together.  I am concerned that neither of them realize how difficult the split will be, and how hard it will be to be a single parent. 

  It’s amazing the things we learn about someone when we run.  I’ve become very close to some of my running friends.  I’ve learned a lot about people, and shared a lot of experiences that most will never understand.  It also amazing how in depth a conversation can get over the course of a 5 or 10 mile run.  Especially when you’re slow like me.

  A preview of upcoming posts: Why Research Study Participation is so Important in CF – I may even post that today!

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