Comments for 52.4 - Running Marathons with Cystic Fibrosis http://cfkid.wordpress.com Three Weeks, Two Marathons, One Chronic Illness Wed, 16 Dec 2009 08:27:26 +0000 http://wordpress.com/ hourly 1 Comment on PTSD by Who Needs Sleep? « 52.4 – Running Marathons with Cystic Fibrosis http://cfkid.wordpress.com/2009/09/08/ptsd/#comment-892 Who Needs Sleep? « 52.4 – Running Marathons with Cystic Fibrosis Wed, 16 Dec 2009 08:27:26 +0000 http://cfkid.wordpress.com/?p=316#comment-892 [...] is always here around Christmas.  Between the money literally flying out of my hands and the PTSD it’s tough to [...] [...] is always here around Christmas.  Between the money literally flying out of my hands and the PTSD it’s tough to [...]

]]> Comment on Random Thoughts by pegson123 http://cfkid.wordpress.com/2009/10/24/random-thoughts-2/#comment-883 pegson123 Tue, 03 Nov 2009 17:13:06 +0000 http://cfkid.wordpress.com/?p=337#comment-883 hey mate... i had my flu shot...went fine...just a saw arm for a day.... no real flu system. check out my cf blog www.pegsoninthepresent.com hey mate… i had my flu shot…went fine…just a saw arm for a day…. no real flu system.

check out my cf blog http://www.pegsoninthepresent.com

]]> Comment on Random Thoughts by Jackie http://cfkid.wordpress.com/2009/10/24/random-thoughts-2/#comment-880 Jackie Mon, 02 Nov 2009 18:46:09 +0000 http://cfkid.wordpress.com/?p=337#comment-880 Hi Mark, Just found your site today. I am a marathoner and CFer as well. I actually ran cross country and track for the Univ of Oklahoma. After my last conference meet my senior year I decided to do a marathon because I figured I would never be in that kind of shape again (come to find out- 5K-10K shape is a little different than marathon shape... i.e. 13 mile long runs don't really cut it!). I went out a bit too fast (I think I was clocking 7:15-7:30 miles for the first half) but ended up getting some gatorlyte (high-sodium gatorade) and GU and finished in 3:30. It was the accomplishment of a lifetime. That was about 4 years ago- I am 26 now, married with a son Max (who was born after my second marathon-equivalent exertion- a drug-free labor:) My sister and I are both DF508/2184delA. Interested to read about your trial results.... and particularly your sweat changes.... I can't wait for a day when I am not caked in white crystals post-workout :) I believe I have a hunch which trial you are in and I have heard through the grapevine that others are having similar and very exciting results. I am just eager for them to open it up to those of us that are heterozygous DF508. Keep running!!! Hi Mark,

Just found your site today. I am a marathoner and CFer as well. I actually ran cross country and track for the Univ of Oklahoma. After my last conference meet my senior year I decided to do a marathon because I figured I would never be in that kind of shape again (come to find out- 5K-10K shape is a little different than marathon shape… i.e. 13 mile long runs don’t really cut it!). I went out a bit too fast (I think I was clocking 7:15-7:30 miles for the first half) but ended up getting some gatorlyte (high-sodium gatorade) and GU and finished in 3:30. It was the accomplishment of a lifetime.

That was about 4 years ago- I am 26 now, married with a son Max (who was born after my second marathon-equivalent exertion- a drug-free labor:)

My sister and I are both DF508/2184delA.

Interested to read about your trial results…. and particularly your sweat changes…. I can’t wait for a day when I am not caked in white crystals post-workout :) I believe I have a hunch which trial you are in and I have heard through the grapevine that others are having similar and very exciting results. I am just eager for them to open it up to those of us that are heterozygous DF508.

Keep running!!!

]]> Comment on All about CfKid by Anthony http://cfkid.wordpress.com/about/#comment-879 Anthony Sat, 31 Oct 2009 03:32:47 +0000 #comment-879 Hi Mark, I love the blog! Amazing job with the marathons. My wife has CF (she's actually a patient of Dr Allen Lapey), and I've been trying to utilize my running to raise money/awareness for the Cystic Fibrosis Foundation... Is Team For Life looking for runners? I'm 3 months into my running, and hoping to run my first marathon in 2010. If not, any suggestions on starting up something would be super helpful. Consider your blog bookmarked! Hi Mark,

I love the blog! Amazing job with the marathons. My wife has CF (she’s actually a patient of Dr Allen Lapey), and I’ve been trying to utilize my running to raise money/awareness for the Cystic Fibrosis Foundation… Is Team For Life looking for runners? I’m 3 months into my running, and hoping to run my first marathon in 2010. If not, any suggestions on starting up something would be super helpful. Consider your blog bookmarked!

]]> Comment on Random Thoughts by Brian http://cfkid.wordpress.com/2009/10/24/random-thoughts-2/#comment-878 Brian Tue, 27 Oct 2009 19:14:36 +0000 http://cfkid.wordpress.com/?p=337#comment-878 do while hug.needed Mark.hug loop Chin up buck-a-roo ;-) do while hug.needed
Mark.hug
loop

Chin up buck-a-roo

;-)

]]> Comment on Random Thoughts by tara http://cfkid.wordpress.com/2009/10/24/random-thoughts-2/#comment-877 tara Sun, 25 Oct 2009 14:18:38 +0000 http://cfkid.wordpress.com/?p=337#comment-877 Hi Mark, and all blog readers. I'm Tara. I was just diagnosted on 9/1 as mark indicated and it was a shock for a lot of reasons to me. I am a former elite runner/triathlete... I had 20 kidney surgeries from a car vs. bike (me) accident while training for an ironman... that took me out of a lot of competition. I am now a very happy middle-of-the-packer, grateful for my ability to run. I have a desire to spread knowledge. I have to figure out the venue for that. In time I will. You can count on that. I am in for The Pig. Definitely In. I did use 9/1/09 as an opportunity (it is ongoing) to assess where I am, what I want to be doing and can I really do it? I'm still at "where I am"--- I think I will stay here as long as I can. I am moving to what I will do with the knowledge of where I am. Mark has been a great inspiration for me. He was the first person outside of my spouse that I reached out to. I will never forget his amazinly warm and timely response. Keep Running my friends. Hi Mark, and all blog readers. I’m Tara. I was just diagnosted on 9/1 as mark indicated and it was a shock for a lot of reasons to me. I am a former elite runner/triathlete… I had 20 kidney surgeries from a car vs. bike (me) accident while training for an ironman… that took me out of a lot of competition. I am now a very happy middle-of-the-packer, grateful for my ability to run. I have a desire to spread knowledge. I have to figure out the venue for that. In time I will. You can count on that. I am in for The Pig. Definitely In.

I did use 9/1/09 as an opportunity (it is ongoing) to assess where I am, what I want to be doing and can I really do it?
I’m still at “where I am”— I think I will stay here as long as I can. I am moving to what I will do with the knowledge of where I am.

Mark has been a great inspiration for me. He was the first person outside of my spouse that I reached out to. I will never forget his amazinly warm and timely response.

Keep Running my friends.

]]> Comment on Two More Weeks by Dave C. http://cfkid.wordpress.com/2009/10/13/two-more-weeks/#comment-876 Dave C. Tue, 20 Oct 2009 23:02:03 +0000 http://cfkid.wordpress.com/?p=334#comment-876 HOLY FREAKIN CRAP! You did a job on that ankle, my man. Did you get your yard taken care of? I'll come mow it for you. HOLY FREAKIN CRAP! You did a job on that ankle, my man. Did you get your yard taken care of? I’ll come mow it for you.

]]> Comment on Two More Weeks by pegson123 http://cfkid.wordpress.com/2009/10/13/two-more-weeks/#comment-875 pegson123 Tue, 20 Oct 2009 11:16:35 +0000 http://cfkid.wordpress.com/?p=334#comment-875 geeez that look painful.....avoid that swineflu she is shcking. geeez that look painful…..avoid that swineflu she is shcking.

]]> Comment on Stupid Walnuts!!! by tara http://cfkid.wordpress.com/2009/09/25/stupid-walnuts/#comment-861 tara Fri, 02 Oct 2009 01:25:58 +0000 http://cfkid.wordpress.com/?p=328#comment-861 It always happens that way Mark... I had my kidney out in 2007 and could not run or exercise or do anything for about 10 weeks. After that period of time I was approved to sit on my stationary bike for my workouts. The FIRST day, and I am not kidding, my foot was itching in the strap of the pedal.. instead of STOPPING, like any intelligent person would do, I reached down, got my finger caught in the strap that holds your foot in and severed the nerve from my mid knuckle to the top one which resulted in a hanging finger tip.... I embarrassingly went to the ER and I had to wear this weird smelly splint for 4 (YES FOUR) months for the nerve connection to grow back.. Talk about embarrassing.... Well Walnuts.. Yeah, They'll do it to you also. So I have bacteria in the pseudonoma family. (When it rains it pours)-- In my lungs and presumably in the frontal left sinus (CT SCAN detected an obstruction of fluid (mucous)--- SO-- My poor MD who diagnosed me on 9/1 thought he was getting a mild case of CF.. My PFT was great-- My lung bacteria not so good and my resistance to antibiotics at this point is way too good... I am on another 14 days of Avelox. I see the sinus surgeon next week. My pancreas are just simply not working so the increase of the Ultrase MT 20 is frequent... My temp is high ALWAYS.. i am told I am furnace in bed.. with love of course... I miss my life pre-diagnosis... a lot. My days feel like they beat to the pentameter of pills, supplements, breathing treatments, food schedules and running.. I will not stop running. I am running the Hartford, CT 1/2 marathon on October 10th.. I hope you are well Tara It always happens that way Mark… I had my kidney out in 2007 and could not run or exercise or do anything for about 10 weeks. After that period of time I was approved to sit on my stationary bike for my workouts. The FIRST day, and I am not kidding, my foot was itching in the strap of the pedal.. instead of STOPPING, like any intelligent person would do, I reached down, got my finger caught in the strap that holds your foot in and severed the nerve from my mid knuckle to the top one which resulted in a hanging finger tip….
I embarrassingly went to the ER and I had to wear this weird smelly splint for 4 (YES FOUR) months for the nerve connection to grow back..
Talk about embarrassing…. Well Walnuts.. Yeah, They’ll do it to you also.

So I have bacteria in the pseudonoma family. (When it rains it pours)– In my lungs and presumably in the frontal left sinus (CT SCAN detected an obstruction of fluid (mucous)— SO– My poor MD who diagnosed me on 9/1 thought he was getting a mild case of CF.. My PFT was great– My lung bacteria not so good and my resistance to antibiotics at this point is way too good… I am on another 14 days of Avelox.
I see the sinus surgeon next week.
My pancreas are just simply not working so the increase of the Ultrase MT 20 is frequent… My temp is high ALWAYS.. i am told I am furnace in bed.. with love of course…

I miss my life pre-diagnosis… a lot. My days feel like they beat to the pentameter of pills, supplements, breathing treatments, food schedules and running.. I will not stop running.

I am running the Hartford, CT 1/2 marathon on October 10th..

I hope you are well
Tara

]]> Comment on Explosive? by Dave C. http://cfkid.wordpress.com/2009/09/20/explosive/#comment-856 Dave C. Fri, 25 Sep 2009 19:19:19 +0000 http://cfkid.wordpress.com/?p=323#comment-856 That's big improvement relatively quickly...might have to give that book a look. Now, I have had some explosive runs, but it's usually the morning after beer and Mexican food... That’s big improvement relatively quickly…might have to give that book a look. Now, I have had some explosive runs, but it’s usually the morning after beer and Mexican food…

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