Exercise as a treatment

S

SaltyPrincess

Guest
I am 20 and feel like I have tried everything my doctors have asked of me. The vest has been a problem for me. I absolutely hate the vest, I hate feeling restricted, I hate sitting still, I hate the way I felt during the treatment. Now I understand that there are benefits of the vest, I do. However, I think we all have that one thing we just really hate, mine just happens to be a vest. Sure I will swallow 100 pills (just not ADEK vitamins, I will not even negotiate doing this med), I will eat extra food, but I will fight you on the vest. I have always been active, involved in different sports. Gymnastics, cheer leading, trampoline, and track were my favorites and for a while my doctors were not exactly happy I was participating in sports; I became obsessed with my body for a short time. It was not until my doctors begged and pleaded with me to limit my exercise, that I proved to them that physical activities is what kept me alive. I even went as far as to use exercise in place of certain treatments and shared my findings. Exercise is what fuels my life. What about you guys? Does anyone have any fitness things they like to do. Even though I am 20 my love for trampolines is still that of a five year old! Jumpology will forever be my home ;)
 

Gammaw

Super Moderator
Welcome SaltyPrincess! I'm a bit surprised your docs didnt want you exercising. Did they give you a reason for their thinking? Did anyone ever suggest you use other forms of airway clearance besides the vest? Like huffing or PEP. http://www.cff.org/treatments/Therapies/Respiratory/AirwayClearance/
I thought you might be interested in this lady. Athletes and CF seem to go together well ! Lisa Bentley is a Canadian Triathlete that has about 11 Ironman titles.... There are other CF athletes who've contended in the Olympics too. Congrats on your enthusiasm for exercise!
 

imported_Momto2

New member
Salty, I have used exercise for decades as a treatment, and it has worked very very well. When I do get sick, I also have by hubby whack on me the old fashioned way (I also cannot tolerate a vest, it breaks my ribs and makes me itch like hell!) I have a tremendously powerful cough, so that helps too. Why on earth would your docs want you not to exercise? Is your BMI very low?
 

jaimers

Super Moderator
I have used exercise in place of vest treatments before as well. I didn't replace the vest completely with exercise but certainly a treatment here and there. Like Gammaw mentioned there are other options for airway clearance that might be really helpful in conjunction with exercise. I have an Acapella that I use sometimes post exercise or vest and sometimes on its own. I'm also surprised your doctors wanted you to stop or significantly cut back on exercise. It's proben to be so beneficial or us cfers!
 
S

SaltyPrincess

Guest
First off thanks for all the comments. When I started my Cystic Fibrosis journey, my care team really didn't have much to go on. So up into my early teens was a learning period for all of us. What really concerned them was not the fact I did sports it was some of the sports I competed in, like competitive gymnastics and cheer leading. My gymnastics career was intense to them and they thought with other sports added to it I would just stress my body out and it didn't seem like I would have time for all my treatments. Skipping treatments, however, was not okay with my parents so I was able to have a balanced mix of treatments and competitive sport career. My sports are my life, without them I do not feel complete and I do not feel healthy. Sometimes I do get angry because I read of people with CF who don't really seem to have a problem with complying with their treatments and I'm over here like yea no lets go four more rounds before I submit to a treatment, but I guess in my own way that is how I go about 'dealing' with CF. Maybe it is all an excuse?
 

Gammaw

Super Moderator
You're an adult and you make your own choices and reap whatever the consequences both good and not so good. So I guess my question is - how are you doing??? If you're happy with your condition using exercise as a substitute for the vest, then great. But I wonder if you think you need to do more for better results. Consider other forms of airway clearance if you hate the vest. Talk to your respiratory therapist about it. I bet you're not the first to hate the vest. You might also try doing the vest on down tIme anyway. Like if you watch tv, read, listen to music whatever.
I had to laugh when you said they didn't want you doing gymnastics. My little guy is in Gymnastics and loves it. I feel that it helps build his chest muscles up and I tend to think increasing upper body strength is helpful. It appears to me that the vest alone was not enough to up his lung function but sports is what pushed him up higher. How's your lung function? And I have to wonder whether you go to a CF Center? I suspect at this point in the history of CF treatment, they would encourage your love for exercise.
 

Gammaw

Super Moderator
I would add that since I've allowed my kiddo to enroll in four days of sports per week, his pulmonologist said that if time is a problem, he can skip the last vest on those days unless he's on Tobi. The vest helps open up the airways for TOBI to get thru. Of course only your doc knows all the considerations unique to you and can develop a suitable plan. Just be frank with them. If there's an area you have trouble with compliance, let them help you find an acceptable substitute. Don't be secretive. It's your doc, not your mother! It's not judgment, it's treatment!
Blessings.
 

JazzZyx

New member
I have always been very active - since my pre-teen years, my morning and evening jogs or walks are how I clear all of the gunk out of my chest. Pity the fool who is behind me and has to dodge all the flem that I hack up and spit out! The more difficult it is for me to excise,, the more important it is for me to exercise..
 
H

Hail2Pitt

Guest
Exercise is so beneficial for everyone, including us CFers. My CF docs have told me to do vigorous exercise 3-5 times a week, and I do at least that much. I don't love the vest either, and actually don't use it most days, since it just doesn't seem to do much for me (though I know it does benefit a lot of people). Plus, I have an accessed port most of the time due to long-term IV treatment, and the combination of needle, port, and vest is very uncomfortable. I only pull it out if I'm sick or can tell that I have more congestion than usual (e.g., during allergy season). It's ridiculous that your docs told you to limit exercise! My approach sounds similar to yours - do as much exercise as you can tolerate!

That being said, in addition to exercise, I still do two pretty long airway clearance sessions each day, where I do a combination of hypertonic saline, Aerobika, autogenic drainage, etc. We're all a little different, but for me, I've found that exercise alone isn't enough to get me cleared out. Though, it seems to get things nice and loose so the airway clearance sessions that follow are very productive.
 
Top