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    • #16461
      Brittany Foster
      Keymaster

      I never gave much thought to cardiac and pulmonary rehab but with a (hopefully) upcoming heart surgery to help some of my symptoms, I have given it thought and it’s definitely something I would want to do. I do not have a good exercise tolerance right now because I have been malnourished for a few months. My surgeon has noticed some muscle wasting and it is tough to see and hear that about my body that once felt so different than it does now.

      For those that have gone to pulmonary or cardiac rehab, how long did you go for? Did you see improvement in exercise tolerance and your exercise capacity? What types of exercises did you do and what did you do after on your own for exercise?

    • #16518
      Kathleen Sheffer
      Participant

      I wish my doctor had suggested this before my transplant. It wasn’t until after my surgery that I tried pulmonary rehab.

      It is FUN!

      Okay, so, definitely more fun when you have brand new lungs, BUT…it is a great way to be motivated by group exercise in a safe setting. I was the youngest person in the class, which was pretty great because all the older patients cheered me on. They were so sweet and supportive!

      I especially loved the classes I took at a facility in a retirement community. Everyone was so friendly and engaging. You could tell they had a good time! I couldn’t drive (or do much of anything on my own) at the time so my mom came with me. She was inspired by the women who were much older than her and lifting heavier weights – two years later, she’s still incorporating more strength training classes because of this experience we had.

      So I say try it. If you like it, do it for as long as insurance will cover it! If nothing else, you’ll have something to write about. 😉

      • #16533
        Brittany Foster
        Keymaster

        So true !
        LOL! I love the older people in groups ! I am always motivated by them too and they get so excited to see the “younger ones” too! I connect to older people, probably because biologically my insides feel about 90 hahahaha! I’ll definitely get benefit out of it though and I am really looking to boost my confidence after this surgery and get back out there and start exercising again but I want to do it in a safe environment fist.

    • #16562
      Carol Volckmann
      Participant

      Hi Brittney,
      When I was first diagnosed I did go to cardio/pulmonary rehab and it did help. The treadmill was the most effective as to increase my time and distance with the 6 min walk. The other exercises helped also. Now 7 years later I still work out on my own at a fitness center and it really makes a difference.
      The first 2 pulmonologists I saw told me excercise would not really help, they also told me I had 3 years to live! After searching for the right team I waz told that excercise is very important but it us important to start off slow and build up your stamina. That waz 7 years ago and I am now 75 and very stable and keep working out!
      Good luck Brittney we are all sending you positive thoughts with love.
      Carol

      • #16574
        Brittany Foster
        Keymaster

        Thank you so much for such kind words ! I’m glad that you have been able to build up your exercise tolerance and are now working out on your own and keeping yourself accountable ! I’m sure it helps and gives you that freedom back to do your own routine. I definitely will want to look into this after my heart surgery that I have coming up (probably within the next 2 months after all the pre op appointments and everything is finally scheduled). Keep up your great enthusiasm !

    • #16573
      Kimberly
      Participant

      I have been doing pulmonary rehab for years I started with slow walk and now I swim 2 hrs 3 days a week

      • #16575
        Brittany Foster
        Keymaster

        Kimberly,
        I heard swim and water aerobics is a really good alternative type of exercise. I never would think of swimming in a pool! There is an indoor and outdoor pool at my apartment complex so when I’m able to I’ll have to take advantage of that more!

    • #16578
      Robin Taylor
      Participant

      Hi Brittany! Sorry I’ve been quiet on hear lately…just really busy and not much to say. I have been on Instagram and have been following your posts. Sending prayers and good surgery vibes for your upcoming procedure! The topic of Pulmonary Rehab is one I do have an opinion on. I have been going since last Spring and the difference in my health is remarkable. I go twice a week. In the beginning I struggled on the treadmill to do 8 mins at 1.5mph, my O2 would go down to 84 with 10L continuous flow. I also used the arm rower and Nu-Step and on those machines my O2 stayed around 91-93. I am on 3 PH meds and O2 24/7 at 4L. Energy levels at that time were very low with naps most afternoons.Fast forward to today: I still go twice a week, with an extra day on the treadmill at home. I’m up 14 minutes at 2/2.2 mph, O2 level stays average of 92, still on 10L. I’ve lost 40+ pounds and my energy level is high…very rarely do I nap. But the best news is…my lung pressure at my last heart Cath in January was 25! A very long way from my original pressure of 90 when diagnosed in August 2017. The enlargement on the right side of my heart has also gone down. So is it the meds, the Pulmonary Rehab or a combination of both? I don’t know, but I will keep it up and continue to increase my time and speed to keep this energy and the lung pressure at bay. I still have 100 ponds or so to lose to be considered for a lung transplant and that’s the goal right now. I hope that you get a surgery date soon and you can get back to eating and regain your strength! You are my role model…you are a PH warrior, on to your next battle!!! ❤️&🙏🏻

      • #16580
        Brittany Foster
        Keymaster

        Thank you so much for this great reply Robin! I definitely would think that is a combination of the meds, your fighting spirit, and pushing through to get to where you are today in your pulmonary/cardio rehab program! Your story definitely inspires me too and I hope that you continue to keep pushing forward even on your hard days. I’m glad that you are having better days now with less frequent naps. I hope to get my energy levels back up and I’m confident that the surgeons are making sure they are taking the best approach to my surgery. I met with the second surgeon that will be involved in this yesterday and depending on what the esophagus surgeon thinks, they will either do this through an open rib thoracotomy or a full open heart/chest. Definitely high stress that I have been under but I’ve almost gotten used to the waiting around and high stress. It’s like my energy is coming from that now LOL! Hope you keep us updated on how you’re doing ! 🙂 So happy to hear about those numbers on your last cath. That’s so amazing!

      • #32821
        Rickie Daniels
        Participant

        To Robin,

        This is so impressive — good for you.  Now — come make me do it!

        Rickie

        • #32828
          Jen Cueva
          Keymaster

          Hi @indihomaaol-com, it’s great to see your post. Your comment to Robin reminds me that we all need a little help from our PHriends. For me, many of you are what inspire me to work harder or push myself when I know I can do something.

          Other days, I know that it is not going to happen. Those days for me, are often the most difficult. But knowing I do my best, I allow myself time to rest, and then most days. Do you find yourself struggling with this?

          We are here cheering you along every day!

        • #32835
          Rickie Daniels
          Participant

          Hugs and more hugs to you Jen.  Thanks.

          Rickie

        • #32845
          Jen Cueva
          Keymaster

          Thanks, @indihomaaol-com. Cheers to a healthier and Happy New Year. I appreciate the hugs and love coming from you.

          Take one day at a time; I hope to see your updates more in 2022.

    • #31263
      Colleen Steele
      Keymaster

      @mknevada is about to start cardiac rehab. She would appreciate anything members can share about there experience with this.

    • #32829
      Jen Cueva
      Keymaster

      @mknevada, how are you doing with your pulmonary rehab? I know you were talking about trying to get outside and do a little more on our Zoom call. However, your walks were already more than I can do now. I’m sure with the cooler temps and less humidity this time of year in Houston, that helps a little, too.

      How was your Christmas? Thinking of you as I sent some wet, much cooler hugs your way from San Diego. Everyone says I carried this wet weather from Texas, LOL

    • #32851
      John Caraway
      Participant

      Absolutely 😁 my pulmonary Rehab coincided with my Uptravi titration which worked out perfectly for me. I felt like I’d hit a hurdle in my life and just knew with some help I’d clear it and be able to progress. I moved from sea level to 4300 ft elevation and went from oxygen supplement and electric cart to no oxygen or cart in a week. My oxygen levels at rest average 92% where before exercise & Uptravi I was 86% and dropping with any activity.  I’m exercising 3x a week now and only use oxygen when sleeping or during my exercise routine 😅 life’s so much better

      • #32854
        Jen Cueva
        Keymaster

        Hi @jecaraway62, your post is so uplifting. This is such a nice post to start the new year and week.

        You are proof that exercise is essential and can be done with PH. LIke @cdvol3gmail-com, I was told at the beginning, almost 17 years ago, not to exercise.

        On Saturday, I took an ebike ride along the SoCal coast for a short ride. I crashed afterward, but it was so worth it.

        Like you, moving from Texas to California, I’ve been able to do a bit more outside and decrease my oxygen usage.

        Kudos to you, my PHriend. Happy New Year, keep on moving in 2022. Life s great!

    • #32852
      Carol Volckmann
      Participant

      Way to go John!!! Pulmonary Rehab, Cardiac Rehab, exercise  – walking, using a treadmill- all so important. Two Pulmonolgists when I was first diagnosed told me exercise is okay but really would not help and I had 3-5 years to live. That was nearly 19 years ago, I am 77 and have plenty of years ahead!

      The Pulmonolgist that I found later said it the info I was given was “BS”  – exercise is very important.

      You’re the proof John! Keep on going! And … Happy New Year, May it be filled with Joy, laughter and better health!😊🥂

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