The PRAXIS Nexus The PRAXIS Nexus

The Top 10 Things Pulmonary Rehabilitation Did For Me

Posted on March 23, 2016   |   
18 Comments   |   
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Ken W.

This PRAXIS Nexus post was authored by Ken W., an active member of our COPD360Social community who was diagnosed with COPD in 2010. He is married, has two grown children and nine grandchildren, and is an enthusiastic traveler and exerciser. Ken lists nature photography and bird watching – including eagle nest monitoring! – as well as complex cross stitching among his many hobbies. Thanks to Ken for sharing his experience with pulmonary rehabilitation (PR) with our community!

10. Forced me out of the house and into a small group of people with similar challenges.

In 2010, I spent 13 days in the hospital and was then released with O2 24/7. I knew nothing about COPD or O2 options. I also didn’t know if I would ever work again or if I could leave the house for more than an hour or so with a small tank. Being encouraged to travel to PR and the chance to see I was not alone on this journey were extremely helpful to me.

9. Exposed me to the various options for stationary and portable oxygen.

The only thing I knew before PR about supplemental O2 was that I had a concentrator for home use and small tanks for outside the home. PR taught me about options including LOX (liquid oxygen) and POCs (portable oxygen concentrators) as well as the difference between pulse and continuous flow.

8. Helped me to understand the various medications I am on, the dosage and how to properly use an inhaler.

I was sent home on lots of medications but didn’t understand what they were, what each was for or even how to use an inhaler or a nebulizer, all of which was cleared up at PR.

7. Helped me to understand my respiratory system and COPD.

All I knew about COPD was that I couldn’t breathe well. In PR we were taught about all of the elements and impacts of COPD, the differences between asthma and COPD, how smoking impacted our lungs and the advancement of COPD.

6. Taught me how to use pursed lip breathing.

Prior to PR I did not have any idea what pursed lip breathing was or why it could be beneficial. It is a simple process that has great impact and has become second nature to me.

5. Taught me the use and benefits of an oximeter.

I knew very little about an oximeter other than the fact the doctors used them on me frequently in the hospital. PR taught me how to properly use one, what the readings meant and how to monitor my sats, particularly when exercising or being active and how to adjust O2 flow during exercise to remain saturated.

4. Forced me to begin exercise and convinced me I could do it.

In many ways, getting me started on regular exercise was the most important part of PR and it led to the things ranked higher on this list. I was not in shape, had never exercised regularly, had gained significant weight in the hospital and desaturated just walking across a room. The last thing in the world I thought I could do was exercise. The patience, the pace, the various types of equipment and seeing others completing the tasks got me to the point of good exercise which had a big effect on how I felt and how active I could be out of PR.

3. Taught me the value of continued daily exercise.

The combination of what I learned at PR and what I felt were obvious benefits of the exercise convinced me that if two or three days per week of exercise was good, then more frequent exercise would be better. So I joined a gym and began a regimen of an hour or more of aerobic exercise at least five days per week with strength conditioning at least three days per week. After a couple of years I invested in home equipment so that I could continue to exercise without the travel and with my home O2. I now exercise essentially everyday with occasional exceptions for very busy days or travel. For example, as of today I have formally exercised for 42 days in a row and on 78 of the 82 days so far this year. I keep a log of my daily exercise on my computer and also track it on a website called the President’s Challenge in order to provide incentive to keep at it – even there are many days I don’t really want to get in there and work out.

2. Gave me confidence to keep living.

Coming out of the hospital I was depressed and ignorant and scared. I didn’t know how to cope with leaving the house and was intimidated wearing oxygen in public. I was too weak to play golf or ride my motorcycle or do the other things I had always done. The entire PR experience gave me confidence that if I committed to exercise and taking my meds as directed, I may be able to regain much of the activity and social life I had enjoyed before diagnosis. It started me on the path to living again.

1. Gave me hope!

I think we are all scared when 1st diagnosed with COPD, particularly if it is at a severe level, which mine was. The natural tendency is to worry about what one cannot do and how quickly the disease may advance rather than taking a more positive look at how to best manage the disease and live a life as close to normal as possible. I was able to return to golf and motorcycle riding, I was able to get off of O2 during the day and in many ways considered my life more normal than not. Even though I am now on O2 24/7, I spend my time on living life rather than dwelling on the negatives. I absolutely believe that I would not be alive today nor would I have been able to do all I have done the past 6 years had it not been for the wonderful people and wonderful PR program at Florida Hospital, Celebration.

18 Comments



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  • Great article, Ken. I, too, went to PR at Florida Hospital, Celebration, and feel that had it not been for that program, I wouldn't be here today, or if I were, that I'd be confined to my home, unable to do much of anything at all.



    Reply
  • Great article, Ken, and comment Karen! Pulmonary Rehab has helped so many people live fuller, more active lives! It's great that you have shared how much it's helped each of you and I hope it encourages folks to participate in programs in their area.

    For folks who don't have access to a program in their area, ask your doc if you can be referred to a physical therapist who specializes in working with patients with lung disease, who can help you develop a personalized safe and effective exercise program.

    Also like look for COPD support groups in your area. Your MD and hospital may know what's available.
    Reply
    • Thanks for suggesting good questions to ask your doc. I'm still too uninformed on the condition to know what to ask.
      Reply
  • What a great article! Thank you, Ken, for sharing your experience!! I hope that it inspires others to give PR a try.
    Reply
  • Thank you, Ken!
    Reply
  • I went through Pulmonary rehab and it got me hooked on exercising and my therapist had me watch a video called " 7 minutes of magic " by Lee Holden. I was hooked. the exercise made my lungs feel so much better. I just started doing the exercise again. I also started walking 30-45 mins. 4-5 days a week. Just found out I need to walk with my oxygen now but maybe it will show someone else that even with ling disease , you can still take a walk.
    Reply
    • Sheryl,

      I have been doing QiGong last June and have been totally hooked ever since. QiGong enabled and empowered me to start exercising. I still do it every morning for 5-10 mins before I use my inhaler. I do it most afternoons or evenings for 10 - 15 mins just to stretch and breathe. It has become an
      integral part of my day. It helps my breathing, it a wonderful gentle stretch and a great stress buster.

      I now go to a fitness center 5 days a week for a pretty decent workout. I always end a session with my QiGong cool down. One of the trainers there that I have worked with asked me what I was doing... she is now hooked.
      Reply
  • Sadly, my biggest obstacle to doing PR is not availability but finances. My insurance has a high deductible, the local program costs an arm and a leg ($150 per session), and even if I'd hit my deductible, my insurance will pay for only a portion of 10 sessions LIFETIME.

    We need to take a serious look at healthcare insurance in this country, because what we currently have is a disaster for everyone but the insurance companies.



    Reply
    • Ben,
      I hate that you can't get it covered. You may want to speak to a therapist at your pulmonary doctors office and see if they can put a program together for you to do at home or in a gym, many of which have very low fees these days. Even if it is exercise on a Wii machine or to a video with oxygen it can help. I wish I new how to get you into PR but if that's not possible find another way to exercise even if it's just a brisk walk back and forth in a hallway in your house. Everything you can do to get your heart rate up for as long as you can while keeping your sats at 90+ is a good thing!
      Reply
    • Thanks, Ken. I do my own program on the treadmill, so it's not like I'm not getting any exercise. (I did some number crunching about a year ago and realized that it was far more economical for me to buy a treadmill and do it myself than it was to attempt to do formal PR.) I miss out on all the social aspects of PR, but given that I'm an anti-social curmudgeon, I can live with that. LOL I fill in the educational aspects by reading up here and elsewhere. I'm doing OK, but it strikes me as insane that the insurance companies make it so difficult for people to get help. Pay for my PR now and avoid paying for my hospitalization later (which will undoubtedly be a FAR larger sum). It's just crazy....
      Reply
    • Ben,

      May I ask where you are located? I run a PR program in rural WV and we occasionally take "scholarship" patients, that is, motivated patients either without insurance or with insurance that doesn't pay for PR. Perhaps if we float this out to the COPD community, we could find you some options in your area that would work with you.
      Reply
    • One of the patients we serve has a $40 copay PER session. The Pulmo Rehab folks are looking into offering him a package at a set price, minus whatever his insurer will pay for 5-6 sessions to help him develop a customized exercise program. They are looking into it and will get back to him.
      Reply
    • I'm in eastern PA in the Pocono Mountains, Chaffee. Thanks for the idea, but I think the commute might be a little prohibitive.... LOL

      Seriously, I'm OK. As I said, I've got my own program on the treadmill to keep me active (currently walking about 200 to 250 calories and 30 to 40 minutes at a time), a good pulmonologist, and a great GP to take care of the ordinary stuff. I hang out here a lot, read up on what to do, and so far so good - neither my pulmo nor my GP can figure out how I can be doing as well as I am. Someday, I'm sure, that will change for the worse, but until then I'm doing great.

      Reply
  • My first day on the site. Have a question. Is there a difference between COPD and Emphysema? And, can someone have COPD without Emphysema, and visa versa? My doctor said emphysema and has not said COPD.

    Reply
    • COPD is an umbrella term for several diseases of the lungs including emphysema, chronic brochitis, pulmonary fibrosis and more. If you have emphysema you have COPD
      Reply
  • Love that so many members seem to be talking this week about exploring or starting pulmonary rehab. Can't wait to hear them report back.
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  • We need more programs like the pulmonary wellness program I started 4 weeks ago. It is not PR, it is a pulmonary exercise program that focuses on strengthening (something I never got in rehab). It is not done at a hospital, instead it is done at a fitness/wellness center affiliated with a university hospital. There are no cardiac nurses monitoring you with telemetry while you exercise although there is at least one nurse on staff and all sorts of medical personnel nearby. They do not supply O2 it is strictly BYOO. By keeping the overhead down the program is more affordable and therefore more accessible to a much larger group. The most remarkable thing about this 8 week program is that total cost is only $200. While it is not covered by insurance it is something I can manage. I do not know but I can't help but think there is grant money coming from someplace.

    You (the group) work with a certified exercise physiologist for 1 hour twice a week on a customized strengthening routine. She has me doing exercises I never imagined I would be able to do and is hitting all those muscles I had been neglecting while exercising on my own. It is not easy but I am doing so much more than I thought possible and with good form. It gets even better. A respiratory therapist from the pulmonary dept. comes for every session. He is right there with us the entire time helping, answering questions, making suggestions. The icing on the cake is that he happens to have access to all my PFTs and works with my pulmonologist.

    I am stage 4 emphysema. I did pulmonary rehab in Dec 2015. My insurance had a $50 co-pay per session. After 4 weeks and $600 out of pocket I had to stop, I couldn’t afford $1,200 for the entire program. But it served its purpose; it safely got me up and going so I could then exercise on my own. The program I am in now is teaching me how to do it right at a very affordable price. I love this program, it is exactly what I have needed and I suspect many of you do too.

    Reply
    • Thanks for your advice Clipper. My pulmonary MD recommended a rehab program 9 months ago and he mentioned that he would set it up and I would be hearing from the hospital. Haven't heard a word, so shame on me for not following up with his office. I have been doing exercises but as you say there are muscles that I have no knowledge of to be worked on. The Dr. has not told me what stage of emphysema I have but that is not so important to me anymore so I don't ask. It's the good days now that count. Have O2 and Advair, and all the rest of the pills for the glucose and the blood pressure and have not done tobacco or alcohol for three years. That sure takes the fun out of tailgate parties, huh. So tomorrow morning I am sending the hounds out to look for the doctor and I look forward to going to pulmonary rehab a.s.a.p. Thanks again,
      Reply

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