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    • #11039
      Kathleen Sheffer
      Participant

      As outlined here, exercising with PH can lead to fainting, excess stress to the right side of the heart, and other serious complications. Done safely, exercising can increase cardiovascular and muscular fitness, control weight, and decrease the risk of other chronic illnesses including diabetes. It’s important to discuss risks and benefits with your physician, and then monitor and self-regulate while exercising.

      Do you feel the risks outweigh the benefits, or have you found ways to exercise that work for you?

    • #11159

      I try to exercise and have found a few ways that work for me. I have also found many ways that don’t work. One that I found does not work for me is exercising multiple muscles at a time. For instance I can do leg exercises or arm exercises, but trying to do both at the same time immediately wipes me out. So if the exercise tape is marching in place, and then adds arm lifts at the same time, I choose to either continue marching and not add the lifts, or stop marching, stand still and do the arm lifts. I can do both exercises but only one at a time. I was wondering if other PH patients had also found it difficult to combine exercises.

      • #11160
        Kathleen Sheffer
        Participant

        Hi Debra! Thanks for joining the discussion. You make a great point. It was definitely more difficult for me to carry groceries home than it was to just walk home or just lift heavy bags. That’s so helpful that you’ve recognized this factor for you – it’s so important to find our own limits. You mentioned exercise tapes – do you have any favorites? I am always hesitant to look online for instruction videos, not knowing if I will be able to keep up.

    • #11162

      Right now I don’t have a TV, so I’m not using any tapes lol. There are a couple of you-tube ones I like. Some specifically for PH, (Introduction to Yoga for Pulmonary Hypertension Patients, 6 Minute PHitness: Full-Body Workout) and also a couple of beginning yoga. I’ve also used the Leslie Sansone Walk ones. Some of the other short YouTube videos (5, 6 or 7 minutes) are also workable.

    • #11165
      Kathleen Sheffer
      Participant

      Wow, I didn’t realize there are workout videos specifically for PH patients. How wonderful! Thanks for introducing me to them.

    • #11182
      Ann Goddeyne
      Participant

      There are 3 online videos for yoga with pulmonary hypertension. They were created by a doctor at Henry Ford Hospital in Detroit. Being out of shape and not too flexible I like that they start with an easy introduction.

    • #11204
      Kaye Norlin
      Participant

      As a PH patient and a registered yoga instructor, I like using chair yoga for PH patients. Dr. Rana Awdish’s videos are good and available on You Tube. There are also many other chair yoga videos on the web for free access. You should only move one body part at a time and NEVER put your heart below waist level. the beauty of chair yoga is that it does break down regular yoga poses so that you are doing one body part at a time. And everyone can be adapted to each and every person. If people are interested and it is ok, I can post some of the better links.

      On a good day, I could walk for 45 minutes, but when I started using oxygen, I kept kicking the tank and knocking it over. I then went to the YMCA in off hours and use the end treadmill with my tank next to me. I also used other machines there that were similar to pulmonary rehab. Some days were better than others and I always tried to listen and respect what my body would tell me.

      I am off oxygen now since being transplanted in January and am slowly building my physical body, looking forward to spring. I have permission to go back to yoga this week (but not to teach yet). I am so excited. I plan to stay at the back of the room and do what I can; that is the beauty of yoga: it is not a contest and each person gets to adapt to what they need and can do. Each day is different. Carpe Diem!

      • This reply was modified 3 years, 8 months ago by Kaye Norlin.
      • #11206
        Kaye Norlin
        Participant

        I really should add that the breathing exercises in Yoga are very helpful for PH patients since many, if not most, of us breath incorrectly. Breathing in yoga enhances lung capacity and teaches you how to breath through exercises, stair climbing, etc. and how to slow your breathing and your blood pressure at the same time. It is not a cure but it does help.

      • #11208
        Kathleen Sheffer
        Participant

        Thanks for that advice, Kaye! I agree the breathing exercises are so important for building the muscle of our diaphragms – something I never thought about until after transplant when I had none! It’s great that instructors can help with modifications like using a chair.

    • #11210
      Jen Cueva
      Keymaster

      Great topic ladies!
      And Kaye, congrats on the transplant !
      Kaye is great at what she does ; I was fortunate enough to have her on a panel we did at the last PH Conference in Dallas.
      I like the idea of chair yoga!

      As mentioned, we are all at so many different levels and our bod react differently, so best to check with your PH Doc as well as listening and learning your own body !

      • #11236
        Kaye Norlin
        Participant

        We are our best doctors if we listen to our bodies!… and thanks, Jen!

    • #11218
      Robin Baker
      Participant

      I started out in a wheelchair. I couldn’t walk across the living room without fainting. After beginning remodulin therapy I was slowly able to walk a little further each day. I still had difficulties doing much more than walk so I would push myself a little further each day. I now walk 5 miles. As my capacity increased I really needed another outlet but I couldn’t force myself to the gym. So I signed up for low impact bellydance classes. I have gotten to a point where my 6 min walk test is almost normal. However it’s been a few years and my disease is beginning to creep back up on me. I just had a new heart catheterization and started a couple more meds. I have not been able to do the dance class for 6 months and I can really feel the difference. It’s very disheartening.

      • #11223
        Jen Cueva
        Keymaster

        Robin,
        I think Belly dancing sounds like fun , even at a slower pace. I know often after keeping pretty stable with PH meds, later others often need to add meds. Hopefully your new added meds and changes will help you feel better and get back your “ norm” and maybe even to do your belly dancing!

    • #11229
      Kathleen Sheffer
      Participant

      Wow, your story is inspiring, Robin. 5 miles?! I agree with Jen that PH patients often need to add or increase medications as time passes. I lack the coordination required for any type of dance class, but I agree it’s important to find something fun that motivates you to exercise (weights and treadmills are boring)!

      • #11237
        Kaye Norlin
        Participant

        The beauty of getting older is that I don’t care if I am not coordinated, I am still going to tap dance- on the good days.

    • #11231
      Jen Cueva
      Keymaster

      Lol @kathleen-sheffer, I’m with you on the lack of coordination. But sounds fun, lol

    • #11342

      Boa noite. Fui diagnostica com hipertensão arterial pulmonar em outubro de 2015. Demorei praticamente 1 ano até descobrirmos a doença. Já estava bem debilitada quando foi descoberta. Iniciei o tratamento imediatamente. Tive uma melhora lentamente devido ao estágio que eu já me encontrava. Hoje estou bem, apesar das limitações. Entrei na academia no final do mês de janeiro de 2018. Faço esteira e musculação de acordo com minhas limitações e tem me feito muito bem. Antes praticava ioga o que me ajudou bastante na parte respiratória e psicológica.

      • #11356
        Isaura Santos
        Keymaster

        Olá Francisca! Boa sorte para a academia e ponha-nos a par de como se sente! Até breve 🙂

        Hey everybody! Francisca is saying she was diagnosed in 2015. Today she is doing better and she joined a gym in January! She used to do yoga which has helped her a lot psychologically and has helped with her respiratory issues.

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