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Any CF runners?
- Thread starter anonymous
- Start date
B
BigAir
Guest
Hi
Yes I run also and prefer running outdoors - I hate treadmills...
I run with an oxygen tank, HR moniter, and a wrist oximeter - check out the video on it at www.esiason.org - the 2 minute video is right on the home page.
also check out the CF Podcasts at: www.jerrycahill.com
Jerry
49 with CF
Yes I run also and prefer running outdoors - I hate treadmills...
I run with an oxygen tank, HR moniter, and a wrist oximeter - check out the video on it at www.esiason.org - the 2 minute video is right on the home page.
also check out the CF Podcasts at: www.jerrycahill.com
Jerry
49 with CF
Hi Jerry,
I just watched your podcast and feel a little shocked that you're on the transplant list. How is it that you can run 15-20 minutes like you said and be waiting for a transplant? I hope you don't mind me asking, but I'm quite curious. You don't seem too out of breath and of course look really great. I am a little confused I guess, that you need one.
I just posted a question on the main forum about high elevation oxygen levels while working out, and think I might need oxygen. What you said was very interesting about how getting below 90% O2 can be bad for your heart. That's what I concerned about so I recently bought a small puls-ox to monitor my levels. I live at 6200 ft and after working out can get down to 83-88% (that is if my little machine is accurate). At sea level I am always 95-98% and with exercise it might go to around 93-94%.
Do you think with exercise that someone can increase their oxygen levels over time? Or do those numbers never improve?
Well, thanks so much for sharing your podcast! I really enjoyed listening to you.
I just watched your podcast and feel a little shocked that you're on the transplant list. How is it that you can run 15-20 minutes like you said and be waiting for a transplant? I hope you don't mind me asking, but I'm quite curious. You don't seem too out of breath and of course look really great. I am a little confused I guess, that you need one.
I just posted a question on the main forum about high elevation oxygen levels while working out, and think I might need oxygen. What you said was very interesting about how getting below 90% O2 can be bad for your heart. That's what I concerned about so I recently bought a small puls-ox to monitor my levels. I live at 6200 ft and after working out can get down to 83-88% (that is if my little machine is accurate). At sea level I am always 95-98% and with exercise it might go to around 93-94%.
Do you think with exercise that someone can increase their oxygen levels over time? Or do those numbers never improve?
Well, thanks so much for sharing your podcast! I really enjoyed listening to you.
I am up to a 1 minute 5 second jog without stopping. Whew! I will try to add 5 seconds each day. I do this during my 20-30 minute walk. I mix in some jogs. several 30 second and one long one which as I said is up to 1 minute and 5 sec. The IV's have helped a lot but this is my last day. I hope I can keep it up without the IV's. I'm feeling much better, I just hope the congestion doesn't return.
John 26 w/ cf
John 26 w/ cf
Hi John,
Oh keep it up. I can relate. I started jogging in April and started out doing 1 minute 30 seconds. I kept doing it and did my vest 2-3x day and worked my way up to 3 minutes straight without stopping. It's wonderful when you start to see improvements! Keep trying and you'll increase your time. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Oh keep it up. I can relate. I started jogging in April and started out doing 1 minute 30 seconds. I kept doing it and did my vest 2-3x day and worked my way up to 3 minutes straight without stopping. It's wonderful when you start to see improvements! Keep trying and you'll increase your time. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi Sonia
I run outside and do NOT like treadmills... I enjoy breathing in the air an not being confined to a treadmill. I used to pole vault and jumped over 16 feet so have always been involved in track and field.
Currently i run/jog about 1.5 miles/day with oxygen due to the drop in my oxygen sats.
Keep on jogging!!!!
jerry
49 with CF
I run outside and do NOT like treadmills... I enjoy breathing in the air an not being confined to a treadmill. I used to pole vault and jumped over 16 feet so have always been involved in track and field.
Currently i run/jog about 1.5 miles/day with oxygen due to the drop in my oxygen sats.
Keep on jogging!!!!
jerry
49 with CF
Hi Sonia, I haven't checked this forum for absolutely months, but I read your post and wanted to share my experiences with you. I have CF and got involved with running about 2 years ago. I have played sports all my life, basketball, tennis, football (soccer), etc... but running was something quite different (mainly aerobic and endurance), so it was a challenge for me to start up. I struggled on my first 30 min run and wondered how I would ever get better. Seriously after about 30 seconds my legs felt like jelly... but I continued. I kept running and promised to myself that I would never stop during a run. Even if I felt rubbish I would run the whole thing til the end (unless of course I got a serious injury!).
That was 2 years ago. In April 2006 I completed my third 26.2 mile marathon. It was in London and I finished in 4 hours 7 mins. My quickest was in Dublin (3.57). Running and raising money for the Cystic Fibrosis Trust (The UK based CF charity) was the most significant thing Ive done in my life. The personal journey and development Ive made has been immense and I do feel proud of myself when I take a second to think back at what Ive done.
I think some of the advice thats been given to you on this thread has been great, the encouragement and running tips. I won't say anymore, aside from an anecdote from my last race (Flora London Marathon April 23rd 2006):
I hit the wall at about mile 23, when I could no longer keep up with everyone and run at my normal, or anything close to my normal, running pace. I could not help but slow down to a crawl. But I plodded. I was running on empty, and feeling jaded to say the least. I was 3 miles from the finish but I knew it would be the toughest 3 miles of the whole race. I needed some sort of boost to keep me going. I could feel the back of my legs, my hamstrings tritching. And my calfs were killing me. At about mile 24, a lady shouted my name from the crowd (it was printed on my vest!). She screamed so loudly that I turned to her straight away. It was like a plee rather than a scream. All she said was 'Rob!! You're running for her'... and pointed to her little girl stood beside her (who must've had CF I guess). That's all she said... but it was so heartfelt. I nodded and kept running. And I guess it must have made a difference, because the last 2 miles were the most enjoyable of the whole race. I lived for every step and I loved every agonising second. I relished the moment and enjoyed the warm feeling that this particular woman had given me. I'll never see her again, or her daughter, but her words will forever be in my memory.
It is amazing just how great you feel when you try and make a difference. I hope for it to continue forever!!
All the best,
Rob
That was 2 years ago. In April 2006 I completed my third 26.2 mile marathon. It was in London and I finished in 4 hours 7 mins. My quickest was in Dublin (3.57). Running and raising money for the Cystic Fibrosis Trust (The UK based CF charity) was the most significant thing Ive done in my life. The personal journey and development Ive made has been immense and I do feel proud of myself when I take a second to think back at what Ive done.
I think some of the advice thats been given to you on this thread has been great, the encouragement and running tips. I won't say anymore, aside from an anecdote from my last race (Flora London Marathon April 23rd 2006):
I hit the wall at about mile 23, when I could no longer keep up with everyone and run at my normal, or anything close to my normal, running pace. I could not help but slow down to a crawl. But I plodded. I was running on empty, and feeling jaded to say the least. I was 3 miles from the finish but I knew it would be the toughest 3 miles of the whole race. I needed some sort of boost to keep me going. I could feel the back of my legs, my hamstrings tritching. And my calfs were killing me. At about mile 24, a lady shouted my name from the crowd (it was printed on my vest!). She screamed so loudly that I turned to her straight away. It was like a plee rather than a scream. All she said was 'Rob!! You're running for her'... and pointed to her little girl stood beside her (who must've had CF I guess). That's all she said... but it was so heartfelt. I nodded and kept running. And I guess it must have made a difference, because the last 2 miles were the most enjoyable of the whole race. I lived for every step and I loved every agonising second. I relished the moment and enjoyed the warm feeling that this particular woman had given me. I'll never see her again, or her daughter, but her words will forever be in my memory.
It is amazing just how great you feel when you try and make a difference. I hope for it to continue forever!!
All the best,
Rob
kelvinvale
New member
<img src="i/expressions/face-icon-small-smile.gif" border="0">
Im a CF dad with a baby of 7 months. I want to lead by example and have entered a 10k run in Glasgow, Scotland in September. Hopefully through time i can introduce Leo to long distance running. I suppose it is not too early to start researching the subject.
It will probaly take me a couple of years to get fit anyway?
I wanted too ask if ruuning was recommended/advised from a young age in the US/World?
Gary
Im a CF dad with a baby of 7 months. I want to lead by example and have entered a 10k run in Glasgow, Scotland in September. Hopefully through time i can introduce Leo to long distance running. I suppose it is not too early to start researching the subject.
It will probaly take me a couple of years to get fit anyway?
I wanted too ask if ruuning was recommended/advised from a young age in the US/World?
Gary
I'm 17 w/ cf and yea exercise is def. recommended at a young age.....what I found difficult was staying hydrated. I was running on average four miles about three days a week or more outside. I wasn't doing a very good job keeping myself hydrated and as a result I had to be hospitalized. Ever since that happened its been even harder to keep myself hydrated then it ever was before....
So be careful. but I took out of that experience alot of tricks to keep myself hydrated.
So be careful. but I took out of that experience alot of tricks to keep myself hydrated.
I'm 25 w/cf, but was only diagnosed at 24. I played highly competitive soccer growing up and during tournaments I frequently was given iv fluids. Nothing fancy, on each team there was always a parent there who was a doc comfortable administering the fluids and so they'd do this. In addition, on one of my teams the trainer insisted on spraying me down whenever possible because I wasn't sweating enough... I wasn't diagnosed cf at the point, but I think it does drive home the need for hydration.
I wish I could run outdoors.... we live in the desert and it is VERY hot during the day (110+) and still warm at night (90+) and usually there are "red flag warnings" cause of the dust blowing and high ozone levels that warn people with lung conditions to stay indoors. We also live around a lot of pollution. So, that being said, I think a treadmill is actually healthier for me. I do wish I could run outside, but don't want to take that chance and breathe in the dust and pollution.
hey guys!<br>
I have made a goal for myself to run 10km by December, so i have
3mnths to get my act into gear! this guy with CF in my country ran
a race over 75km and finished, so that's great inspiration! Just
wondering if anyone can help me with breathing techniques? and any
other advice would be appreciated.<br>
<br>
lauren<br>
19 pwcf<br>
I have made a goal for myself to run 10km by December, so i have
3mnths to get my act into gear! this guy with CF in my country ran
a race over 75km and finished, so that's great inspiration! Just
wondering if anyone can help me with breathing techniques? and any
other advice would be appreciated.<br>
<br>
lauren<br>
19 pwcf<br>
Lauren,
Good for you!!! What a wonderful goal to set for yourself!
Well, the only thing I can offer is what my hubby told me about training for outdoor running (if you train on a treadmill)... You should keep it at an incline (I keep mine at 1.0, but he keeps his at 3.0 and says that is best) when you run cause it better mimics an outdoor run (usually a bit harder to do and not a flat surface like a treadmill, so you're essentially training to do small inclines, etc.) So, I usually run the first 20 minutes or so on 0 incline and bump up to 1.0 for the last few minutes. I've been trying to extend this so eventually I can run at least half my run at an incline. Are you training indoors or out? I cannot train outdoors cause of the dust and pollution of Las Vegas and it stays above 90 for most of the day and into the night.
So, just a tip I have. Again, GOOD FOR YOU! Please keep us posted!
Good for you!!! What a wonderful goal to set for yourself!
Well, the only thing I can offer is what my hubby told me about training for outdoor running (if you train on a treadmill)... You should keep it at an incline (I keep mine at 1.0, but he keeps his at 3.0 and says that is best) when you run cause it better mimics an outdoor run (usually a bit harder to do and not a flat surface like a treadmill, so you're essentially training to do small inclines, etc.) So, I usually run the first 20 minutes or so on 0 incline and bump up to 1.0 for the last few minutes. I've been trying to extend this so eventually I can run at least half my run at an incline. Are you training indoors or out? I cannot train outdoors cause of the dust and pollution of Las Vegas and it stays above 90 for most of the day and into the night.
So, just a tip I have. Again, GOOD FOR YOU! Please keep us posted!
Hey!<br>
Thanks for the advice. I can run at gym on a treadmill or outside.
To put it on incline is a good idea. I've been sick lately,
and I really battle to run then! but hopefully soon I'll be back
running!<br>
<br>
<img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
Lauren<br>
19 fwcf
Thanks for the advice. I can run at gym on a treadmill or outside.
To put it on incline is a good idea. I've been sick lately,
and I really battle to run then! but hopefully soon I'll be back
running!<br>
<br>
<img src="i/expressions/face-icon-small-smile.gif" border="0"><br>
Lauren<br>
19 fwcf
Lauren,
Please do keep us posted!!! I'm excited to see how the 10km goes! My hubby (no cf) also wants to run in a half marathon by Dec., but he isn't training very much and doesn't seem too serious about it. I think that's an AWESOME goal for anyone to have. I need to set goals, but since I can't run outside much at all, I don't get much "real life" practice off my treadmill and I worry about trying a 5 K or something and just not being used to the pavement and elements vs. indoor treadmill. Either way, I know I shoudl just set a goal and GO FOR IT!
Anyway, I hope you feel better soon. Keep us posted! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Please do keep us posted!!! I'm excited to see how the 10km goes! My hubby (no cf) also wants to run in a half marathon by Dec., but he isn't training very much and doesn't seem too serious about it. I think that's an AWESOME goal for anyone to have. I need to set goals, but since I can't run outside much at all, I don't get much "real life" practice off my treadmill and I worry about trying a 5 K or something and just not being used to the pavement and elements vs. indoor treadmill. Either way, I know I shoudl just set a goal and GO FOR IT!
Anyway, I hope you feel better soon. Keep us posted! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I'm so new to CF and this blog that it's really exciting to find other adult CFers who run!
I'm 37 and was just fully diagnosed. But, I have been a serious, competitive runner my whole life. I ran for a Division I college - -and have continued to run and race even now.
I really feel as if running and athletics have kept my CF from taking over my body - - and anytime in my life when I haven't kept up with working out, particularly running, I find that I am SO much more susceptible to getting ill - and getting very ill very quickly.
And I think if you can't run, walking is just as beneficial!
I do sometimes suffer from this: if i go for a hard run, particularly after not having run for awhile, then for the rest of that day or night I run a low-grade fever, have chills, nausea, and weird bowel/digestive discomfort. Some of you have mentioned this, too - and many of you have also referred to something called a PFT??? Having literally been officially diagnosed this week - -what is a PFT? and has anyone else experienced this sort of "sickness" after working out?? what could it be?
I'm 37 and was just fully diagnosed. But, I have been a serious, competitive runner my whole life. I ran for a Division I college - -and have continued to run and race even now.
I really feel as if running and athletics have kept my CF from taking over my body - - and anytime in my life when I haven't kept up with working out, particularly running, I find that I am SO much more susceptible to getting ill - and getting very ill very quickly.
And I think if you can't run, walking is just as beneficial!
I do sometimes suffer from this: if i go for a hard run, particularly after not having run for awhile, then for the rest of that day or night I run a low-grade fever, have chills, nausea, and weird bowel/digestive discomfort. Some of you have mentioned this, too - and many of you have also referred to something called a PFT??? Having literally been officially diagnosed this week - -what is a PFT? and has anyone else experienced this sort of "sickness" after working out?? what could it be?