Archive for July, 2009


  I’m sick of running. I really am.  Two marathons in two weeks has really taken it’s toll.  It’s really taken the fun out of it and I have been taking a break for a while.  Well, now I’m REALLY going to take a break.

  On Saturday, I was cutting my grass.  Leo, my lab pup, was out there following me around like he always does.  It’s actually very cute.  Anyway, my back yard is a little hilly.  There’s one section that is bad, it’s basically the hill my house is built into.  Well, I was cutting that section like I’ve done 100 times before.  All of a sudden, my right leg decided to slip down the hill.  My left leg didn’t make the trip.  I ended up basically in the splits.

   Well, to make a long story short, I have a torn meniscus in my left knee.  Luckily, it’s usually not a career ending injury for runners.  (I do have some running plans, you know)  From what I understand, Physical Therapy does almost nothing and the surgery is fairly straight forward.  Plus, thanks to my pulmonary doc, I have one of the worlds best surgeons doing the work.  Dr. Angelo Colosimo is my doctor.  He’s the guy that put Carson Palmer’s knee back together.  So, my issue should be a snap. 

  From what I can tell, recovery is about 4-6 weeks before I can run again.  That should be enough time to get me good an hungry again.  I’ll post more when I know all the details.


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Research Update

  Just a quick note.  I’m almost finished with the research study.  So far, my PFT’s are up: FVC about 6%, FEV1 about 7%, and (sit down if you know PFT’s, this will shock you) FEF 25%-75% almost 30%.  Yes, that’s right 30%.  I went from 3.01 liters to 3.86 liters.  That’s an increase of 860 ml. 

  For those that don’t know, the FEF 25%-75% measures small airways.  In CF, those are usually the first to go.  Mine have always been high, but to have them increase by 30% in three weeks, that’s amazing.  My percentage is 104% of predicted.  Pretty cool.

  The other thing I’ve noticed is that I’m no longer covered in salt after I exercise.  It’s just weird, but in my mind a sign that the med works.  It’s all just very interesting.

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No Meds?

  I had a conversation with a CF friend tonight.  If you’re reading this, you know exactly who you are.  This person has a very very very very very very mild case of CF.  They admitted to me tonight that they almost never do the breathing treatments that they are prescribed. 

  Well, it’s lecture time, ladies and gentlemen.  If you have a chronic illness, why in the world would you not take medication that helps you.  My friend admitted that it helps, but that they can’t “find the time.”  Sorry, but I call B.S. on that one.  You have got to be kidding me.  I’m doing my Tobi right now as I type this.  It’s really about the only time I have to myself anymore (and one of the few times I ever have to post on this blog).  If you don’t make time to take the meds, I don’t care how mild of a case you have, CF will KILL YOU!  Do not be fooled, it will sneak up on you and take what you value the most.  Your freedom.  Sorry, but this is a hot button topic for me.

  Time for a Judy story.  When Judy was still with us, back in the 70’s and 80’s, Dr. Frank W. Kellogg (See Research Studypost for more on him) would put her in with non-compliant patients rooms during hospital stays.  She would absolutely beat them up until they took their meds.  She was relentless.  And, you know what, she had a great success rate.  These days, CF patients aren’t allowed to be in the same room.  But, let me tell you, I learned a few things from my sister during her 30 years with me.  I will bug the living crap out of someone that doesn’t take care of themselves.  I don’t care if they like me or not, they are going to hear my point.

  Very few people in the chronic illness world get lucky.  My friend has, with a very mild version of CF.  Well guess what, you’re throwing that luck away.  You are in denial that this is a serious illness because you’ve been lucky.  Well, this is your wake up call.  Do your meds, damn you!  I would kill to have your genes for CF.  For one, I’d be much healthier.  Two, my sister would probably still be here!

End of lecture.  Sorry if I’ve offended anyone, including my friend, but it needed to be said.

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Research Study

  I’ve finally found time to post again.  Funny thing is that it’s while I’m doing my meds.  Well, I’m in another research study.  This time, it’s a study I’m not allowed to name (I must have missed that in the consent form).  This study is to test a med that is a first of it’s kind for CF.  This med targets the cause of CF, not just the symptoms.  It’s really cool if you read what and how it does it’s dirty work. 

  Anyway, the study is a six week study with 28 days worth of med or placebo.  There is an 80% chance that you are on med, if in the study.  I think I’m on med, due to some interesting results.  I started the study on 6/23 and had to do a pre-dose PFT.  My numbers were at baseline: FVC: 3.30, FEV1: 2.73 FEF 25%-75% 3.01.  I had my second visit yesterday, 6/30, with another PFT.  My numbers were up: FVC: 3.48, FEV1: 2.90, FEF 25%-75%: 3.31.  Those are an increase of 5-10% in one week.

  The only other thing that changed was that I’m on Tobi, which is a requirement of the study.  It’s possible that the Tobi is giving me the boost, but it usually drops me a little because it irritates my lungs.  I go back again on Tuesday for another PFT, I’ll report my results again then.

The Passing of a Legend

  I really don’t want this to be a side note, because it certainly is not.  I’m sad to report that my first CF doc, Dr. Frank Kellogg passed away on May 28th at the age of 87.  Dr. Kellogg will be remembered by many CF patients and families in the Cincinnati area.  Dr. Kellogg was able to treat many local CF patients with very limited resources until 1989.  He retired just after I graduated from High School.  I received many gifts and cards from him over the years.  If by some chance a member of Dr. Kellogg’s family reads this post, my family gave him a handmade quilt back in 1989 for his retirement.  It was in memory of my sister Judy, whom he cared for her entire 30 years.  Thank you for the care he provided her and, of course, me.

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