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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!😊🥂

    • #34043
      Debbie Moore
      Participant

      I started Pulmonary Rehab late December/early January this year.  I go twice per week. I think it is 34 classes.  I have 7 classes left.  I started with the Nustep and now walk the treadmill.  They bump my O2 to 6L, and I have so much more energy.  I walk about 45 minutes at 1.7 speed.  I feel great but worn out by the end of the day.  The day after I seem more tired than normal (I wonder if this is due to 4L instead of 6L); however, I have noticed improvements to my daily routine.  I can carry a half basket of clothes from my laundry room to the bedroom without the O2 dropping and just yesterday, I went down into the basement and came back up the stairs. Two steps then two good breaths at a time.  By the time I made it to the top I was not winded!  I think exercise is great.  I’m trying to figure out a plan to continue at home.

      I’ll be praying for your calm, peace and successful heart surgery.

    • #34058
      Jen Cueva
      Keymaster

      Hi @debbie, what an excellent update on your pulmonary rehab! You’re almost graduated! Like you, I recall being exhausted that day and the next day or two at times. This was early in my diagnosis, so my memory is not 100%.

      But, the chores and improvements you’re noticing at home are impressive, my PHriend! I would think that your 4L is enough if you’re not desatting with exertion like before.

      Do you have space for a treadmill at home or walking outside? Maybe ask the RT at rehab what they could suggest you do at home. Many will have ideas that don’t require equipment. I bet the stairs would be an excellent workout, taking those breaks and breaths.

      I do try and walk some daily. My goal was to ride my Ebike twice per week, but I had an off week and had no rides last week. I hope to ride later today. But I also wait for Mann,y so if he works late, we don’t go. Although he usually rides 3 times per week.

      Your post will inspire hope and motivate many of us reading to work harder. You’re proof, Debbie. Thanks for sharing, have a great rest of your week. Please let us know what they suggest you do at home when you graduate. WTG!

      • #34068
        Debbie Moore
        Participant

        I have a treadmill and an elliptical, but both are downstairs in the basement.  I think doing both the stairs and the treadmill at one time might be too much, but you never know until you try.  I can always take my scooter and ride it through the yard to the basement access and ride it back.  Glad I’m writing this because it is making me think of ideas.  I live on 10 acres, mostly trees, but plenty of places to walk.  It is a little hilly though.  I would like to find a walking partner who goes as slow as I do because there are lots of greenways where I live.

        I read your article on the Ebike.  So very cool!  I don’t know that it is for me, but my daughter has myasthenia gravis, and she would love it!

        • #34083
          Colleen Steele
          Keymaster

          @debbie we have a treadmill upstairs but my husband wanted to put it in our living room. We do have room for it there but well, it’s out living room! Now I’m kind of wishing I listened to him. Not only would it be more convenient having it there, I think it might inspire us to use it more often than we are.

          I’ve noticed that my friends who have walking partners are more committed to the routine. I hope you find someone. Do you have any neighbors who might be interested or someone from church?


          @jenc
          column about her Ebike is one of my favorites that she has written. I know it’s caught the attention of a lot of people.

    • #34074
      Janet Barry
      Participant

      Hi, everyone.  I never was offered pulmonary rehab but after my triple bypass I did 30 days of cardiac rehab.  I was a bit leery at first, never really enjoying rehab when recovering from two knee replacement surgeries 6 years apart.  But both my surgeon and cardiologist recommended rehab so I thought I’d try it.  I started slowly; only two days per week and then after 3 weeks I decided to up it to 3 days per week.  As someone said the encouragement from others really helps with motivation.  I still try to walk 5 days a week between 1/3 and 1/5 a mile each morning.  My pastor is my motivation.  He always enters the sanctuary and asks whether I walked yet.  How can say no?  I wish I could up it a bit.  Unfortunately, I have trouble with my feet which holds me back some.

      I hope all of you had a nice Easter.  God bless.

      Janet

    • #34082
      Colleen Steele
      Keymaster

      @jbarry28 thank you for sharing, especially the part about how your Pastor cheers you on. Hearing that made me smile.

      Happy Easter my PHriend!

    • #34092
      Jen Cueva
      Keymaster

      Wow, @jbarry28, what a motivational post you shared! I love reading how you increased your rehab to three times per week and continue to walk five times per week.

      You made me laugh when you asked, “how can I say no?” when your pastor asked if you had walked yet. That’s too funny! But true, and so happy that you have found motivation not only from your pastor but from within yourself, it sounds.

      Please give yourself some grace and remind yourself about your foot problems and how much you’re already doing. Keep on moving, my PHriend!

      We had a lovely Easter, thanks. Hopefully, you and your family did, too.

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