What do you CF Centers say re exercise?

[Aboveallislove]

I'm wondering what different CF tell patients re exercise. Obviously it is good, but do your Centers:
1) Give specifics of what types to do and how long, like they do for nutrition (eat so many calories a day), so say exercise 20 minutes per day, jogging or stairmaster?
2) Do they ever tell you not to exercise because of weight loss and a need to preserve weight?
3) Does this change as the kids get older??

thanks!

 

[Ratatosk]

Our local cf clinic, which isn't very proactive, hardly even reactive for that matter has very strong views on exercise. The pulmonologist had a list of don'ts --- no swimming (mold), no hockey (mold), no football or wrestling. Think the only think he was okay with was soccer for some weird reason.

We figured with our family's lake home ds NEEDS to learn to swim. We've had him in ice skating, tennis lessons, baseball. He's been in gymnastics since he was 2 and has recently expressed an interest in basketball. His daycare where he's been since he was 3 months old is very outdoor, sports oriented. They're on the go constantly.

Our CF doctor in the city stresses not only regular CPT/vesting but the importance of being active. Only thing he has stressed is the importance of getting adequate salt because they sweat so much.

 

[jcwise62]

Salt, Salt, Salt

Our local cf clinic, which isn't very proactive, hardly even reactive for that matter has very strong views on exercise. The pulmonologist had a list of don'ts --- no swimming (mold), no hockey (mold), no football or wrestling. Think the only think he was okay with was soccer for some weird reason.

We figured with our family's lake home ds NEEDS to learn to swim. We've had him in ice skating, tennis lessons, baseball. He's been in gymnastics since he was 2 and has recently expressed an interest in basketball. His daycare where he's been since he was 3 months old is very outdoor, sports oriented. They're on the go constantly.

Our CF doctor in the city stresses not only regular CPT/vesting but the importance of being active. Only thing he has stressed is the importance of getting adequate salt because they sweat so much.

My son's only major issue with sports and summer (He is 15 now, played left tackle in the fall and is now a post on the Freshman Basketball team at 6A school) has been salt/electrolyte depletion. We compensate with a daily salt tablet, and his water bottle is filled with "NUUN", does not have the sugar that you find in gatorade. I applaud you for keeping your boy active. It has made all the difference in our son.

 

[Hail2Pitt]

I've been seen at four different CF centers (two as a regular patient), and they all say exercise is one of the most important things we can do. We of course have to take our medications and still do airway clearance, but exercise is pretty much on par with those. I believe that advice is valid for both kids and adults.

I didn't get diagnosed with CF until I was an adult, though I've always struggled with CF symptoms - I just didn't know it was CF. Had I known, I'm sure my parents would have focused more on my nutrition, water intake, electrolyte replacement, etc. when I was playing my various sports. Does your CF center have a nutritionist? He/she should be able to help you figure out proper nutrition to support being active. At this point, I know how much I need to eat as well as how much salt I need to replace when I exercise, but it was more trial and error than someone telling me. Looking back, I probably should have asked my nutritionist to give me some guidance.

I truly believe that I've helped counteract my CF being so active. As a kid, I played organized soccer and basketball, and also played outside all the time, so I ran around a lot. I also rode my bike everywhere. In addition, I played the trumpet from elementary school to college, which is a great lung workout. I also played intramural sports in high school and college, and then in adult sports leagues after college. Even golfing is great, especially if you walk - carrying a bag of clubs for 18 holes is a good workout! In my opinion, Ratatosk, your pulmonologist is not giving you good advice. A lot of CFers play hockey and swim. Gunnar Esiason, one of the more famous CFers, played football and plays hockey now. Perhaps many CF patients are too small to play football (I definitely was), but in my mind, that would be the only reason for them to not play.

Aboveallislove - my center never gave me advice on specific activities. I don't know how old your child is, but I'd say that any activity that gets their lungs working and that they enjoy is probably great. And the enjoyment part is so important! If they get bored on the treadmill, maybe they'd like the elliptical or rowing machine. Or maybe those are boring too, but they like jumping rope. Maybe a team sport is more their speed. Any of it is good!

As kids get older, being active may be even more important to help counteract disease progression. I am in the midst of a battle with M. Abscessus, and despite the fact that I've been smear positive now for almost 8 years, I'm still thriving and my CT scans show very little progression over that time. And I believe it's because I exercise almost every day. Some days I only have time to jump on the elliptical for 20-30 minutes. Other days I run in the morning and lift weights during lunch. I have a much easier time clearing out my lungs when I'm active - my airway clearance is much more productive. If I take just a few days off, I can tell - my mucus is darker, thicker, and harder to get out. Living an active lifestyle is so important for us.

Sorry if I'm rambling too much. I'm a HUGE exercise advocate!

 

[4hats]

My doctor said that exercising is the best medicine she could give me. Of course, I take all my meds and I am totally compliant with my treatments, but I would say that exercising is my key to staying healthy. I too was diagnosed as an adult but I exercised throughout my life and maybe that is what kept me relatively healthy before my diagnosis. Currently, my greatest form of exercise is running. I run a few times a week, and I also do some core exercises as well. My average run is probably 5 miles. I would make sure you take in the appropriate calories (healthy ones) if you are going to do vigorous exercising. I would also recommend choosing a form of exercise that you enjoy but that really gets the lungs working and the heart beating. That helps get all the junk out!

 

[Aboveallislove]

Thanks all! I'd still love more feedback too on what your clinics are telling you. Ours is very generic that exercise is important and asking how he tolerates exercise. I too think it is a huge factor. I'm a fan of running. Okay, "I" am not a fan of running, but I am for him. And the "fun" component. We have our own special running game called Doggy and Rabbit where we'll move the cough put on some music and I'm the doggy trying to catch rabbit. He'll go for 30 minutes hard sometimes--more than I can handle too! And he even told his Ped at his annual check up in response to what he liked to play "Doggy and Rabbit."

Others, anything CF Clinics are telling you for your kids or did things change when you got older for advise?

Thanks!