Pulmonary Hypertension News Forums Forums PH Care and Treatment Exercising With PH VIDEO: How pulmonary rehabilitation can transform the lives of people living with PH

  • Kaye Norlin

    Member
    May 31, 2018 at 6:20 pm

    I can’t say it is my favorite but I walk the mall. Because our mall is dying like many of them in America, it is not crowded and probably less germy than the YMCA. I also love yoga of course. Normally, I would be in the yard and garden most days but not this year. I hated pulmonary rehab but I did go for 6 months as a requirement of my transplant program pre-transplant. I was not required to return post-transplant since they learned that I do exercise. I am probably one of the few people who hated going to rehab, but I found the environment was not beneficial for me and I had an issue with one of the therapists violating confidentiality to the point that I reported her. The exercises themselves were ok and what I did at the YMCA. Our local program was small and I always had to limit my time on the treadmill and other machines and I felt that that was very limiting. If people don’t exercise regularly in some fashion, rehab can be great and it is in a protective environment so there is security there. I know people who have gone for years; and they like the camaraderie. I even have to admit I miss the “old ladies” afternoon group; they were great fun.

    • Kathleen Sheffer

      Member
      June 1, 2018 at 12:15 pm

      I’m sorry you had a bad experience with a pulmonary rehab therapist. I loved doing pulmonary rehab after my transplant. I was supposed to go twice a week, but I asked if I could go to a second facility and do it four days a week. I was always the youngest person there by a long shot.

      Some days my mom would come and if our favorite therapist was working she would get to use the machines and do the weight routines with us. She was so inspired by the women who were living in a retirement home and going to pulmonary rehab each day and throwing five pound weights around! She’s started doing more weight-lifting and similar exercises since.

      I miss the camaraderie too – it’s not as fun to cycle at the gym on my own. The other day I listened to the same playlist I listened to in pulmonary rehab and it brought back great memories of building muscle and discovering my new abilities.

  • Vanessa Vaile

    Member
    October 20, 2018 at 8:54 am

    What a treat to see this video because Dr Patty George is now at Jewish National Health in Denver, where I am now an outpatient, and she is my doctor. I like her, am hugely impressed with her competence and thoroughness, and more confident than I have been since tentative PH diagnosis locally over a year ago.

    • Brittany Foster

      Member
      October 22, 2018 at 8:55 am

      I’m glad you are liking your doctor. I feel that is such an important piece in all of this. If we have trust and confidence in our doctors who are treating us, we will have more confidence and acceptance over what we are going through. I bet a pulmonary rehab would be great and would be very beneficial especially when you start to see improvements each time ! That’s always something that motivates me is seeing a little bit of a reward.

      • Vanessa Vaile

        Member
        October 23, 2018 at 10:31 am

        Brittany, I especially appreciate knowing someone is actually listening, paying attention to what I am trying to tell them.

        But it’s more than just Dr George: everybody I’ve met in the PH Center. JNH is research and outpatient based, and designed around a team system that includes support, staff, techs, nurses and the patient in developing management/treatment plan.

    • Brittany Foster

      Member
      October 22, 2018 at 8:55 am

      I’m glad you are liking your doctor. I feel that is such an important piece in all of this. If we have trust and confidence in our doctors who are treating us, we will have more confidence and acceptance over what we are going through. I bet a pulmonary rehab would be great and would be very beneficial especially when you start to see improvements each time ! That’s always something that motivates me is seeing a little bit of a reward.

  • VK

    Member
    October 23, 2018 at 7:17 pm

    I do singing/voice therapy for pulmonary rehab. Because I have vocal cord problems, insurance paid for the basic training and assessment visits.

    They didn’t pay for the Xbox One that I used with it, though, but it’s all part of fun: https://youtu.be/CPGAGi9zNj8?t=2195

    • Brittany Foster

      Member
      October 24, 2018 at 11:32 am

      VK,
      That’s awesome that you do singing therapy! Have you noticed improvements? What do you think is most beneficial about it?

      • VK

        Member
        October 24, 2018 at 6:27 pm

        Hi Britt,
        I think the best things about singing therapy are its non-pulmonary benefits.

        It helps strengthen the voice, which a lot of us PHers have problems with.

        There might also be psychological benefits, depending upon the song in the game (Rock Band 4, for what it’s worth). Anthrax’s “Caught In A Mosh” is great after a bad day at work, and word has it that 6 different Carrie Underwood songs are available.

      • Brittany Foster

        Member
        October 25, 2018 at 6:29 pm

        VK,
        you had me at Carrie Underwood ! I’m sold hahaha! It is so true that music can be extremely therapeutic. Today, after a long day at the hospital I am unwinding with some much needed music. Thanks for telling us about the many benefits of this 🙂

  • jen-cueva

    Member
    October 24, 2018 at 10:17 am

    Great video! I was just talking about Dr Patricia just s few days ago, as I’m impressed by all she does. I’m happy to know , her clinic is great as well.

    Vanessa, so happy you have her and as Brittany said, this is definitely a major player when dealing with PH, and any disease. Trust and confidence in your doctors. My last PH Doc, I liked him so well, when I moved to Texas, I continued to see him and fly every 6 months to a year to visit him and do my testing etc. Thankfully, it worked for several years once I moved, then finally heard about a new PH doc near me so I made plans to meet with her and she’s awesome as well.

    Exercise….early on in my PH life, I went to Pulmonary Rehab 2-3x week, I would go home and crash after . I almost stopped, but doctor said to try to continue, I did, I “ graduated “ but I didn’t find it was tailored to younger PH patients, as the other patients were all older and doing circles around me, but because I was young, they kind of let me go on my own more as they concentrated on the other clients, and I was one of two on oxygen. So, this left a bad taste in my mouth, so like Kaye, I was not impressed or benefitted as I should have. @kathleen-sheffer, I am glad you had a positive experience, I know many PHers who did as well, you’re comments reminded me of a good PHriend, Colleen, which I’m sure we share in common.

    Now, I try and do water therapy when I can, stretching exercises and that’s about all, I do try and walk more, but like the Malls, etc, I require a wheelchair.

    • Brittany Foster

      Member
      October 24, 2018 at 11:36 am

      Jen
      The positive thing is that you are TRYING. And you are pushing yourself to do all you can. My level of activity changes so much day to day. I wish i could get back into having some sort of routine again and be able to tell myself “every other day from 5 to 6 I’ll go to the gym” . But i would just never be able to follow it. It’s finding the balance of pushing yourself but not pushing myself too hard. That has always been so hard for me!

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