Exercise program & airway clearance devices

nmr8177

New member
What would you recommend for starting a daily exercise/weight training and physical therapy program to someone who is in relatively good shape but has neglected doing these things for several years? I am a 29-year-old male and would like to see a greater improvement in my PFT scores. I am on Pulmozyme and TOBI every other month and this has caused some improvement. I used to work out with weights and it helped tremendously but I didn't keep it up unfortunately. Also, how important is it to have physical therapy or use an air clearing device of some kind? I've never felt that chest percussion or any of those things did much for me at all. However, my PFT's have been going down for the past couple of years and I really want to get them back up. I have not had IV's or an active infection for many years but it seems my lungs are becoming obstructed anyway, based on my test results. Thanks for your help.
 

Magerly111

New member
I am not a doctor, but I am just thought I'd give my own 2 cents....My doctor always stresses how important airway clearance devices are. Exercise is good, don't get me wrong, but there's nothing like the special devices (mainly the Vest and Manual Chest PT) to actually target and loosen up that mucus to make it easier to cough out. I am always on Pulmozyme and I go on TOBI every other month also, but if I didn't do my vest, I think I'd be screwed over somehow. The less mucus you have in your lungs, the less chance of getting a bad infection from the bacteria that is in there. I was just reading another post, and what I got from it was that there isn't a significant increase in PFT's from doing just exercise. It helps, but you have to have the combination of everything to really see a difference. I guess in your previous experience, I would be proved wrong, but that's just my opinion.On another note, having an infection isn't the only reason people go on IV's. Sometimes it's just to get those PFT's up...Although, the majority of the people with decreasing PFT's do have an infection, so maybe you should consider going on IV's. Now, when trying to start some kind of exercise regimine, I can't help you on that because I'm extremely lazy. I get my exercise by walking to and from class everyday lol. Yea, I know, that's pathetic exercise....I should look into going to the gym.
 

anonymous

New member
sorry to 'butt' in on your question but is it really true that the least amount of mucus you have in your lungs means you are less likely to catch an infection.. does it not have anything to do with your immune system!.?!?!. Also i can relate to the original poster, i get no benifit out of doing physio therepy and havent done it for years I am not very productive with coughing stuff up anyway and even using the flutter i stil dont think it benifits me greatly so i would love to hear the doctors input on this one!
 

Mockingbird

New member
Actually, there's a study that came out a while ago that said the mucus is what fights the infection! And our lungs get filled with pus, not mucus, which is where the infection comes from.... I think. I'm kinda going on memory here and I haven't heard anything about it for a while, but maybe someone else has...Jarod22 with CF
 

cfgirl38

New member
I dont get a whole lot of benifit from my flutter either I do a little bit, but I have a treadmill and a gazelle. When I use either one I really clear whatever in there out. My dr said it's good however is best for you. I don't know if it will help you or not, but maybe give it a try. I'm also on duoneb for my nebulizer and that really get me coughing too.
 

Magerly111

New member
I didn't mean that having no mucus was good, but with having CF, we do have an extra amount, much more than other people w/o CF, and it's also much thicker. The thick sticky mucus can clog up parts of the lungs, causing difficulties with lung function. By doing CPT or other airway clearance devices, it helps move the mucus around, losen it and make it easier for you to cough it up. Why else would doctors stress doing airway clearance if it wasn't meant to get you to cough up your mucus? I'm not a genius when it comes to CF, but this is what I have been told from my dr. I'm sure everyone has their own opinions. I was just trying to help nmr8177 out since the real doctor hasn't responded since this question was posted. On another note though, flutters aren't the best airway clearance thing for everyone. For me, I always felt like you have to have it at a certain angle, breathe a certain way...it was just so technical. I never got anything out of that either. Every case is different though. An exercise that really gets you coughing seems like it would be most productive, but it's totally up to you. You should definitely talk to your own doctor about it though.
 

nmr8177

New member
Thanks, everyone, for your responses. The doctor answered a couple of my questions on another thread, the one titled "Is It Too Late?" He apparently does believe strongly in doing some kind of respiratory and physical therapy in addition to regular exercise. When I was young, my parents tried to do regular CPT on me and we also had one of those hand-held percussors for a while. I also had a vest when I was in high school, but the insurance stopped covering the cost so we gave it back. I hated doing it and after I started on Pulmozyme, I really felt like it helped my lungs stay clear enough that I didn't need the vest. My mom has always thought I need to have IV treatments once in a while, just to make sure all the "bugs" were getting killed but I really don't think I need it unless I'm really congested or coughing up a lot, which I never do. Magerly, I think you mentioned that IV's helped get your PFT's up, though, and I'd be interested in knowing how much it helped. My doctor would probably fall over if I volunteered to have IV's! It would definitely be a last resort, and I really would want to try other things first. I did weight lifting and worked out regularly for about 3 years and my PFT's were about the best they've ever been when I did that. My doctor has been encouraging me to start it up again and I know I should but I HATE going to the gym and really want to get my own equipment. Right now I can't afford it but I know I need to do something. I know I'm very lucky that I'm well and am strong enough to do the exercise. I do pushups and lift a few weights now and then, but I realize it's not enough to make much of a difference.
 

Magerly111

New member
Hey nmr8177,Ok, let me tell you a story of my hospital history lol. The first time I was ever hospitalized was when I was 16. I went in because my PFT's were low, and my x-rays showed infection or blockage. At this time in my life, I was trying to be "normal" and didn't really do any of my meds. I was not active, never have been or will be lol. So anyway, my PFT's were mainly caused by the infection, so I went in the hospital. While in there, like every hospital, I did everything 4 times a day, nebs, CPT/Vest, and then the IV's on whatever time schedule they were on. So after 2 weeks of that, my PFT's had gone from low 60's to high 80's and 90's. The hospital also introduced me to the vest, and with my luck, I've had it ver since.A couple years went by, and after my first year in college, I had to go in again. My PFT's were only slightly lower than my norm, and I had no other signs of being sick...except that dang x-ray. So I go in again, for a week, then go on home IVs for a week. I went back for a followup, and the Dr. wanted me to keep doing more IV's for another week...then another...then another. So I was on them for 5 weeks total. My PFT's showed maybe a 2 point increase, and my x-ray looked better. The last time I was in there was this past summer, and it was for the same exact reason...the unfortunate x-ray. Even after 2 weeks of doing all that extra stuff, my PFT's hardly increased at all, and the x-ray showed I was doing better.So, all in all, I've only been in those 3 times, but I will probably go in again this summer for the same thing. But hey, going in only once every year, when it's not during school, is okay with me. It helps me maintain by PFT's at my full potential. I want to say that majority of people who go on IVs have an infection and/or low PFT's, but every case is different. All of our bodies are different. But if you feel lik eyour PFT's are lower than what they should be, you might want to really look into why they are that way. Since you're not doing any physio therapy or much exercise lately, you might have blockage, and going into the hospital would really help out. They'll do all the percussions for you and you'll do the vest and really get that junk moving. I personally hate the vest, but it works for me, and it's ashame you don't still have it. Pulmozyme, which I'm sure you know, is basically just a mucus thinner. Of course that can really help you out because if that's all you're usually on medicine-wise, then its helping to thin the mucus and make it not so thick to cause blockage. Although you should definitely look into something else to combine with it. Since you want to try other things first, and even though I'm no health expert, I'd just try doing an activity that helps you to cough. Like running, swimming, walking even. I know that when you go into the hospital, their physical therapy for you consists of the treadmill or the bike for 20 mins. Anything you can do can help you out. as long as you're not just sitting there. But who am I to tell you not to just sit...that's all I ever do. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
Kim,You're probably right. I know I need to do something more and plan to as soon as I can. I was in the hospital and had IV's the first time when I was 5 years old and had to go back again a year later. Back then they didn't do the home IV's as much and it was a real bummer. I was in for about 4 or 5 weeks at a time, and was only able to go home on breaks. It was like being in prison. I went in again when I was about 11 and had my sinuses cleaned out, and once again had IV's for about a month. I think I was in the hospital a couple of times after that and had some more work done on my sinuses. The last time I had IV's, I was 16 and was able to do them totally at home. I'm sure they helped me a lot, but I really don't want to do them again if I don't have to. I started on Pulmozyme in 1994 and I have done so much better than I ever had before. I should have kept up with the weight training but I was working at a pretty demanding job and just didn't seem to have the time. I was on my feet all day, though, so I was moving around and probably kept my lungs clear. After I left that job, I was less active physically and that's probably why my lungs started going downhill. I've started a couple of new meds since then, Zithromax and TOBI, and my lungs were clearer on my last checkup and my PFT's hadn't gone down any but up a couple of points. I've also gained about 5 pounds in the last 6 months or so. Anyway, thanks for all the input. I hope you continue to do all the things you've been doing. You have a much better attitude than I do but I'm working on it.
 

anonymous

New member
Very well said, Kim. I beleive as you do we all need to find what works best for us and follow through. I have my days where I don't want to do anything too. But I feel so much better when I just do it. HeeHee Becky
 

Magerly111

New member
Man, it's so nice to have people respond to what you write. This is the first time anyone has really acknowledged what I've had to say. I have to tell you, this put me in a good mood lol. I hope what I have said helped you out somewhat. As for my positive attitude...I think I was born with smile on my face lol, cuz I've been through some really bad stuff, and I still smiled the whole way cuz things just don't bother me much. Having a good attitude towards my life really helps me out in the long run.
 

cfgirl38

New member
I am usually smiling or giggiling about something. I am a happy person as well. It beats being moody and my boyfriend certainly wouldn't appreciate it either. HeeHee.
 

anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>RosesforCFinMich</b></i>I dont get a whole lot of benifit from my flutter either I do a little bit, but I have a treadmill and a gazelle. When I use either one I really clear whatever in there out. My dr said it's good however is best for you. I don't know if it will help you or not, but maybe give it a try. I'm also on duoneb for my nebulizer and that really get me coughing too.<hr></blockquote>What is a gazelle?!...Also does anyone else have the problem of no matter what exercise or airway clearance devices i use i just cant seem to get any mucus out! And when i do its such a small quantity it seems like a big effort for nothing?
 

anonymous

New member
Hi its a machine kind of cross between skiing and walking. Tony little promotes it. They have a website. I think Tonylittle.com or put Gazelle crosstrainer in the subject box. It should come up. Do you take anything to thin your mucus? If not it may help you. Becky
 

cfgirl38

New member
Maybe your just not producing alot right now. Do you feel congested or full of junk? Are you active? I really don't produce alot until I start excersicing or with my duoneb. I'm still trying to get used to exersicing. I have been doing it for about 2 months now and it's still really hard to get started each day. But after I start and when I finish I feel so much better. My dr says I'm a bit lazy, as if I need a medical opinion on that. HeeHee. I hope this helps you a bit. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Taylor

New member
nmr8177,Thank you for your post!The following three paragraphs are from my reply to another post, which helped address a similar question:It is never too late to exercise or to develop healthy life habits. I hope you always keep that in mind as you live the rest of your life. Please don't lose any more time dwelling on what you haven't done, but be motivated and encouraged by all that you can still do. At 18, you can do so much more to help slow the progression and assist in improving your standard of life. The most important thing is consistency. This is the number one problem that all of us face in trying to maintain a regular exercise program. Most of us repeatedly give up too soon which only adds to our discouragement . Unfortunately, the process of developing healthy habits is often times a very difficult one. It requires motivation, discipline, and work in addition to failed attempts. I believe we all have time to exercise (it always comes down to prioritizing). We make time for activities that we enjoy and are motivated to take part in.Although exercise is an integral component of your health maintenance, regular respiratory and physical therapy is equally crucial. Please don't waste any more valuable time and get started on these very helpful preventative measures. It is also in your best interest to be under the care of a interdisciplinary medical team who understands your unique medical needs and communicates with each other to provide you with great care. Let those "down" days be a motivating factor in making this life changing step toward a healthier future.<i>Text</i>I would recommend getting back to a regular exercise program as soon as possible. Start with 3 times a week at low to moderate intensity for 3-4 weeks. This should help decrease delayed onset of muscle soreness. After 4 weeks, gradually begin increasing the intensity and get up to 5 times a week of resistance training. It is important to rest your muscles for at least 48 hours before taxing them again. This can be achieved by rotating between muscle groups. For example, working the pushing upper extremity muscle groups Mondays, pulling upper extremity muscle groups on Wedensdays, and lower extremity muscles on Friday. Warming up before every exercise session is crucial for prevention of injury (brisk walk on the treadmill for 10 minutes). This helps increase blood flow throughout the body (soft tissues) prepping for training. Cardiovascular exercise should be conducted after the resistance training. It is excellent to finish the workout session with a comprehensive stretching program for flexibility and maintenance of joint integrity. I completely agree with the other users who have replied to you. Although exercise is important , there is no question appropriate medications, regular manual chest PT, and other airway clearance techniques are beneficial. Exercise must be an accompaniment to these medical interventions.I truly hope you don't waste any more time and jump back on the "exercise wagon" soon!Sincerely,Dr. Lee
 

nmr8177

New member
Dr. Lee,Thanks very much for your help. I am sure you are right about starting back on a regular physical exercise program and also about the physical and respiratory therapy. Knowing you should do something and doing it are two completely different things, however. I am still not convinced that the CPT ever did much good for me, but I guess the numbers don't lie. If I did start back with this, which method do you feel is the most effective? At my age, I don't think anyone in my family would be effective at doing the manual chest percussion therapy so I would need to go to a professional therapist. As much as I hated it, I think the vest would probably be my best option but I don't think my insurance will cover it as it didn't before. Do you or anyone else know what the Vest costs these days? As far as exercise, Dr. Lee, do you recommend any type of equipment other than weights to increase lung capacity? I have wondered about something like BowFlex or other home gym type equipment but again, I would have to find a way to pay for it. If you know of any books or articles that would give more information about types of exercise to target specific respiratory problems, please let me know. I would definitely like to do some research for myself on this. Thanks again!
 

anonymous

New member
Is anyone familiar with the Acapella device and, if so, when and how often do you use it? I would be interested in knowing also if Dr. Taylor recommends it. Thank you.
 

anonymous

New member
I replied this thread quite a while ago and noticed that it disappeared off the board, so I did a search and was able to bring it up again. I would still like to know if anyone could answer my questions, expecially about the airway clearance device called "Acappella" or Acappella Plus and how it can be used along with a regular exercise program. Thank you.
 
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