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    • #17649
      Colleen Steele
      Keymaster

      Exercising with PH is a challenge due to the exhausting symptoms, but often doctor’s still want you to maintain exercise in some form. There are also PH patients dealing with co-existing conditions or recovery from a surgery that requires some exercise. Is anyone receiving or has participated in physical therapy? If so, please share your experience. How is it managed with your PH?

    • #17658
      Brittany Foster
      Keymaster

      I’m excited to hear some of the responses from this! I will be starting a rehab program post op for cardiac and pulmonary rehab. I know that the initial part of the testing requires some type of baseline exercise stress test. I have always done poorly on these tests because my oxygen levels would dip so low and they would have to stop it. I’m anxious to see if this surgeon has improved things (it seemed like it definitely was improved at least symptomatically) and my levels didn’t drop as low as they usually do when I had PT in the hospital. I am also going to look into chest PT to help with my clearance of my lungs. I have an Afflovest for airway clearance that helps me so much but I’m unable to use it right now because of the incisions. Another thing I am looking forward to sharing about is PT on my left side to help with motion of my arm and all those major muscles and nerves that were cut into. I still don’t have feeling on my left side and I’m curious about when that will come back?

    • #17703
      Vanessa Vaile
      Participant

      Colleen, thanks for this thread. There’s no local or nearby pulmonary rehab program. So mine is DIY, although I’m not totally on my own because I can call my PH team at National Jewish Health in Denver and had a pulmonary PT consult with my quarterly check in. I’d like to hear from and compare notes with others doing the same.

      • #17718
        Brittany Foster
        Keymaster

        Vanessa,
        I’d love to hear about other’s experiences too. How long of a drive is it to get to the program for you? Do you have someone that takes you to appts at this hospital? My mom usually is the one to go to all the appts with me, especially when they are any more than an hour drive away. I feel fortunate to live close enough to tue city but sometimes with the traffic it can be hard. Kind of nervous about how its going to be driving back and forth a few times a week. I’m sure it will get OLlD fast.

        • #17887
          Vanessa Vaile
          Participant

          Brittany, I’m not in a rehab program — hence the DIY or “do it yourself” designation. The drive from Yuma in the NE corner of Colorado to NJH in Denver is 2½ hours — when we can avoid rush hour traffic. My daughter (works full time, has two children) drives me. Finally reaching the point in treatment of quarterly check-ins is a break for her. Last appointment, my PH doc scheduled me a PT consult at the Pulmonary Rehab Center for eval and guidance on my own program.

          When I write up my notes/observations about the consult and make digital copies of hand-outs, I’ll share them here. I’m especially interested in comparing notes with others who are, although checking in with docs, more or less on their own for rehab.

          Not unrelated to physical therapy and DIY PT, yesterday I completed my 1st 5K at the 5:10 to Yuma. Here’s a picture of me crossing the finish line.

        • #17892
          Brittany Foster
          Keymaster

          Vanessa,
          Words can’t describe how proud I am (and all of us) are of you and that 5k ! I know it must have been such a great and powerful feeling. Even on our bad days, I like to remind myself that we CAN do hard things and we are capable of more than we give ourselves credit for ! This is a huge motivation to me and others on here to read of your story and see all that you are doing.

    • #17769
      Kathy
      Participant

      I am just finishing my 36 session rehab program. It has done wonders for me. It is located about 45 minutes from me and I go 3 days a week. I have to be there at 12:45 but we don’t start exercising until 1:00 and then it’s continuous for 2 hours. I can’t say enough positive things about it. Yes, the driving gets old, but so worth it!

      • #17773
        Brittany Foster
        Keymaster

        Hi Kathy,
        I’m so glad to hear of your positive experiences with the program. I also have to drive about 45 minutes to the one that I am going to and I know it will be hard work at first but well worth it! What types of exercises did you do for the 2 hours? Did you have any type of sessions that were more “talk based” with a group or was it mostly just exercise? I have heard of some cardiac and pulmonary rehab programs that do talk sessions and almost like small counseling sessions for those that attend. I think helping the mind and body could be BOTH beneficial !

      • #17779
        Colleen Steele
        Keymaster

        Kathy and Brittany, I have a 45 minute drive to take my son to physical therapy! Is that a requirement or something, lol! I’m glad to hear you are both getting PT because it does have it’s benefits. Cullen never had it when he had PH and sometimes wonder if it would have benefited him. His PT is to help with osteoporosis that he developed post transplant and to stretch out his chest muscles which still ache a lot of times from surgery scarring.

        • #17787
          Brittany Foster
          Keymaster

          I know that exact chest muscle scarring that you’re talking about and I totally feel his discomfort with that! That is problem the not so fun side of PT especially when it’s working muscles that haven’t been worked in a awhile. I’m sure all types of movement that are supervised by professionals are great. Being in this type of rehab style environment would make me feel more confident as I begin to tackle harder things when I gain up some strength back! From what I hear, it can really be something to look forward to.

    • #18213
      DAVID PETERSON
      Participant

      I just started physical therapy to see if a better posture will help. So far I have done stretching, but there will be som weight lifting later. I always have the option to increase my oxygen if I need to. I wonder if anyone has these symptoms? When my blood oxygen starts to drop I start getting lower back pain that increases as it drops.

    • #18273
      Elaine Wanhala
      Participant

      I am in Pulmonary Rehab program. Lucky for me my drive is only 4 minutes. I have come across a Facebook group called Ultimate Pulmonary Wellness: COPD, PF, Pulmonary Hypertension and Others. There is a lot of helpful info and there is also a home pulmonary rehab program. You do have to pay for it. That might be something to look into for those who do not live near a rehab program .

      • #18277
        Brittany Foster
        Keymaster

        Elaine,
        That sounds like a great idea to have a type of “home pulmonary rehab program”. There are times where I so wish I could build up some strength to become a personal trainer and get training in pulmonary care and rehabilitation. There was a point in my life where I wanted to go to school to be a respiratory therapist and also wanted to do training. Maybe one day that will happen for me. But this information is so good to know. Is there a link to it for those that would be interested in signing up? Thank you for the name of that facebook group too! I think I am also a part of it. I’m so glad people with lung conditions are looking to maximize their function and health in any way that they can! How long have you been going to the pulmonary rehab for? I have been doing some exercising on my own but I’m sure that the program is beneficial for you. What benefits do you see or are you looking to get from it ? What are some of your goals?

    • #21705
      Jo Ann white
      Participant

      I am halfway through a 24 session pulmonary rehab program an hour away. It has been tremendously helpful in terms of strength and answers to practical questions. Worry about going once flu season starts in earnest. Do two 15 minute aerobic sessions and four weight machines with two sets of 15. At home do two 15 minute sessions on exercise bike plus a series of home exercises some with weights. Use 6 liters when exercising and 4.5 to 5 liters otherwise. Very low intensity ac
      tivities designed to maintain muscle tone. Much less leg swelling, etc., when I exercise.

      • #21707
        Brittany Foster
        Keymaster

        Jo Ann,
        I am glad that you find physical therapy to be helpful. I know that after recovery from my heart surgery I had a lot of fluid retention and was on lasix at a pretty high dose (80 mg a day) when before my surgery it was only 20 mg as needed. My heart and body had to work a lot harder to recovery but building muscle tone back really helps with circulating that blood through our body which helps with the fluid retention too. That’s great that you are able to know what liter flow is best for you to be at with activity. Did they help you manage your oxygen needs with activity too? I’m sure you benefit from knowing exactly how much you need with the activity that you are doing.

    • #21713
      Carol Volckmann
      Participant

      Hi Everyone, when I was first diagnosed with PAH the 1st 2 pulmonologists told me that excersise would not do me any good and that I had a life expectancy of 3 years – that was 8 years ago!

      When I found my current team, the pulmonologist told me I could have a normal life span and it was BS that excersise would not be helpful. Quite to the contrary he felt it was very important and would be helpful.

      I use to work out at a PT center 3 days a week mostly using the tread mill, stretching and some core. Excersise is important as long as it the specific excersise is appropriate for the individual.

      Since we sold our home and live and travel in our RV I have to be really diligent and find places or walks that I am capable of doing.

      For the last several years my 6 minute walk test have been stable and I do plan to have many more years.

      • #21726
        Brittany Foster
        Keymaster

        Carol,
        you certainly proved them wrong with the exercise thing ! I am surprised that you were advised against exercise, usually any kind of exercise, as long as it is right for the individual person and their needs would be encouraged, especially by medical professionals. Once you find something that works for YOU I think that is key and it is something that will make you mentally and physically just feel better. I am glad that you are going on walks when you can and even though you are travelling you are trying your best to fit exercise and physical wellness into your life.

    • #21745
      Cristi Starling
      Participant

      My son’s PH is caused by lung damage from being born missing half his diaphragm. And missing most of his right lung. With that being said, he’s been in pulmonary rehab weekly for 10 years.
      The benefit is measurable.
      His scars and cut muscles from diaphragm patches leave his posture wonky. So we do a bit for that.
      But the better you breathe, the better you process o2, the lower your PH.
      Heres a couple of easy things you can do at home: blow bubbles. Yes, kids bubbles. The bigger, the better.
      Get a harmonica and develop it as a skill.
      If you can get a spirometer, use it.
      When we started, in order to say the alphabet, Justin had to take a breath between every letter.
      Now he takes a breath the same way I do. Abcdefg breath etc.
      Anyway, there’s my 2 cents:)

      • #21757
        Brittany Foster
        Keymaster

        Cristi,
        Those tips are so helpful! Who knew that blowing bubbles could be so good for us!? I really like the element of “fun” in the therapies like using musical instruments etc. I always found (even as a little kid) that when I did bubbles or even blowing out candles on a birthday cake I would get really dizzy and light headed. It happened to me during flute lessons in 4th grade and I actually passed out ( EMBARRASSING MOMENT AT IT’S FINEST!)

      • #21762
        Colleen Steele
        Keymaster

        Cristi,
        My son is post-transplant and it is recommended that he uses a spirometer at least once a day. Especially for those who struggle with exercise that is an excellent way to give the lungs a more manageable workout. I have heard a harmonica suggested before but I can’t remember if that was when he had PH or after transplant. He was given a kazoo to practice his breathing while on his way to his first heart cath when he was 8. It was May and he had everyone laughing as he played jingle bells all the way through the corridors.

        Carol and Joanne, I admire your ability to pursue physical therapy. Exercise was so difficult for my son when he had PH. He was excused from gym for this reason. I wonder if physical therapy had been suggested if he would have been able to handle it and what if any of the benefits would have been.

        • #21786
          Brittany Foster
          Keymaster

          Colleen,
          I have done different types of PT for my lungs and heart. But mostly it had to do with breathing exercises and chest clearance kinds of physical therapy. I also get this done by a respiratory therapist or PT when I am in the hospital with upper respiratory infections. It is a good aide to medications and steroids to help clear the airways of all the gunk that gets trapped so easily.

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