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    • #30542

      Recently I’ve been doing a lot of reading with respect to pulmonary rehabilitation programs. I am part of a program that is working for me, and has proven to be very beneficial in the management of my disease. Although some exercises are difficult, and in the moment I may not enjoy them, overall I think the program is making a difference in my quality of life.

      The reason I have been researching other pulmonary rehabilitation programs is purely out of interest. I thought it would be beneficial to connect with other patients who are actually partaking in these programs and could share how they feel about them, based on their experience versus reading about them online. I did find this statement interesting, which comes from the American Journal of Respiratory and Critical Care Medicine (2005): “this comprehensive intervention (pulmonary rehabilitation) has been clearly demonstrated to reduce dyspnea, increase exercise performance, and improve health-related quality of life (HRQL)”. 

      • As a patient: do you agree with this statement based on your experience of pulmonary rehabilitation?
      • Which are the most difficult exercises for you in your rehabilitation program? Which are the easiest?
      • Do you find an exercise particularly beneficial to decreasing episodes of shortness of breath (dyspnea)?
      • Would you recommend a pulmonary rehabilitation program to others?

      I’d love to hear from you! If you wanted to read the full article I referenced above, you can find it here: https://www.atsjournals.org/doi/pdf/10.1164/rccm.200508-1211ST

       

      Charlene.

    • #30544
      Rosanne T.
      Participant

      Hi my name is Rosanne. I was diagnosed with IPF almost 4 yrs ago. My problem that I need some help with is sleeping. Can’t get a full night’s sleep in I don’t know how long. Any advise I would surly appreciate. Thank you Charlene.

       

      • #30556
        Phyllis Della-Latta
        Participant

        @ro83

        Roseanne, elevation of the upper torso is helpful in sleeping through the night. My husbands sleep dramatically improved since we purchased a bed that elevates the upper torso. An additional advantage is prevention of micro aspiration of gastric fluid (asymptomatic or symptomatic GERD) into the lungs which is thought to contribute to the scarring process. My husband is also taking a 5 mg of Ambien (zolpidem), a sleep aide. Obviously you need to check with your pulmonologist to make sure the drug is not contraindicated with any of your meds. He can now sleep a full 8 hours.

        • This reply was modified 9 months, 4 weeks ago by Charlene Marshall. Reason: tagging
      • #30604

        Hi @ro83

        Thanks so much for writing and sharing your concerns with us. I can’t really comment on how to improve your sleep as I’m not a physician but this is something that many IPF patients have shared with me that they experience. Sometimes I struggle with my sleep too! Are you able to talk to your family doctor or pulmonologist about this and see what they recommend? I think it also depends what your lack of sleep is from: is not able to get comfortable? Is it due to the cough? The strategies to deal with each of these, to hopefully improve your sleep, will be dependent on the cause of lack of sleep.

        Take care,
        Char.

      • #30635
        Susan
        Participant

        I have found melatonin helpful for sleeping. Check with your dr

    • #30547
      Randi
      Participant

      Hello Charlene,

      My name is Randi. I am 68 years old, and was diagnosed with NSIP about a year and a half ago, and I have been attending pulmonary rehab sessions twice a week since then.

      • Without a doubt, it has been instrumental in reducing dyspnea, increasing exercise performance, and improving health-related quality of life (HRQL).
      • It’s hard to say which exercises were difficult and which were easy. When I began, I could do only a few minutes on the treadmill. Now I can do 20 minutes on the elliptical machine and another ten on the treadmill, in addition to breathing exercises, strength and resistance exercises, and stretching.
        I had severe COVID and was hospitalized for over a week in January 2021 (diagnosed two days before my vaccine appointment). When I returned to the rehab program, nearly two months later, I obviously had to work to recoup cardiopulmonary endurance, but I am sure that the work I did before the COVID helped me to overcome it, and I have since surpassed where I was before.
      • I find the breathing exercises enable me to expectorate much more successfully.
      • I would recommend a pulmonary rehab program to anyone with a chronic lung disease. In fact, I think with the exception of my lungs, I’m probably in better shape now than I have been in years.

      Thank you for sharing the article.

      Best,

      Randi

       

      • #30626
        Paul B ~ Lakeland
        Participant

        Hi Randi,

        I too had Covid Jan 2021. Then initially diagnosed with IPF in the spring, then NSIP in the summer, then IPAF last month.  Slightly improved outlook with each new diagnosis. If you wish, feel free to message me for discussion of clinics etc. that have helped me.

        Regards,  Paul

    • #30549
      Mary Geissler
      Participant

      HI — I was diagnosed spring of 2021, after noticing I could do literally nothing without becoming totally out of breath. It was a sudden change for me, as I had been, even at 73, quite active. I have no other health issues, so this was huge change for me. I sat around and babied myself from May-July. My Pulmonary dr said he was recommending me for this three month program at a local hospital. I had NO idea what is was, but was naive enough to assume it was something that would reverse my condition! That idea was corrected almost immediately. The therapist was a registered nurse in Pulmonary Therapy and she ‘educated’ me with appropriate handouts and good discussions about my condition. We started out slowly, – treadmill, elypical, weights, recumbent bike, and my oxygen was plugged into the hospital source at all times. My heart rate and oxygen levels were checked constantly and recorded and they remained good. I hated exercise all my life – avoided it – I am not overweight at all, but I preferred to just do very active things instead. So this was a big change for me. At first I was very tired after getting home from the one-hour session. However, I began to feel better –  so much better – I noticed within a couple weeks I had a lot more stamina. I was able to finish some of my garden projects I had let go for three months! I didn’t need naps unless I really worked hard! The more I exercised, the more of my life I got back. It was psychologically beneficial for me to have an interested medical person pay close attention to me – I could ask her things and she was very honest. She said I was one of the better candidates to ever complete her classes – I never quit – I kept setting the bar a tiny bit higher each time. When my last session rolled around, I cried. I didn’t want to leave but I know others are waiting to get into such a program. I wondered if I would keep it up or get lazy again. The good news is: I work harder than ever. I have a nice sized Nordic Trak that doesn’t take up a lot of room. I am now well over a mile a day and I do not miss. I do push ups and have other equipment I can use. One thing that profoundly shocked me: I could not do any exercises that created any sort of pressure on my lower abdomen! I didn’t know why some days I felt just lousy for the next day or weekend. Like leg presses: putting your feet up against a metal plate and pushing. Just getting my feet up to the plate, and scrunching down my stomach to do so, resulted in me feeling sick for the next day. I reported this to my therapist who said she’d not heard that, but since that time, I’ve read that pressure on diaphragm does result in much discomfort for IPF patients.  I cannot bend over very well either – so now my go-to shoes for everywhere but dressy occasions are KIZIKS! Slip on and off without having to bend and tie laces! I can do any exercise if it doesn’t put any pressure on my lower abdomen – diaphragm – but walking is the best thing I do. I also set the machine at an incline – I cannot set it steep, maybe never will be able to, but I can set it a notch or two higher for the bulk of my time and not feel discomfort. I also have to say I have a nice tv mounted above my head so Netflix series programs keep me so engrossed in plots I FORGET how long I have been on machine. I always use oxygen from my big container, – if outside, I have a backpack if I need it. I wanted to join a yoga class but read that some of the positions put a great deal of pressure on the area that causes me so much discomfort. So I will have to see about that. I strongly encourage anyone to enroll in the program and just see if you don’t begin to feel like you get so much of your old life back this disease tried to take. Not havin’ it.

      • #30560
        Allan Byron
        Participant

        Thanks so much for the info

        allan

    • #30550
      Denise Stogdill
      Participant

      I started rehab shortly after I was diagnosed.  I didn’t know what to expect.  At my rehab, we do breathing exercises, aerobic exercises and weight strengthening exercises.  At first, I couldn’t do very much but after a couple of months I have increased in repitition and resistance on the different exercises!  My breathing and endurance have increased.  I’m still on oxygen for exertion but I no longer need it very much when I’m still.  My favorite exercise is the seated elliptical.  I can now do level 3 on the elliptical for 15 minutes.  My least favorite is the walking and that is probably the most helpful with the shortness of breath.  I am 64 and have NSIP and bronchiecstasis.  I strongly recommend pulmonary rehab to anyone that suffers from lung disease.

      • #30577

        O was diagnosed with pf  almost a year ago. I am on oxigen 24 hrs s day with am oxogen machine. I get out of breath after a short walk. I would love to be able to reduce the time on the oxigen machine and keep my oxigen level up as when i try to go without the suplimental oxigen my level drops right away

         

      • #30578
        1. O was diagnosed with pf  almost a year ago. I am on oxigen 24 hrs s day with am oxogen machine. I get out of breath after a short walk. I would love to be able to reduce the time on the oxigen machine and keep my oxigen level up as when i try to go without the suplimental oxigen my level drops right away

         

    • #30575
      HerbC
      Participant

      I’m currently of the lung transplant list and my lung transplant surgeon suggested I enroll in a cardio pulmonary rehab  program at the hospital. He stated that the better condition you’re in helps with the recovery after transplant. It’s been a little over a month since I started the program and I can defiantly feel the difference. My o2 levels have increased when stationary without oxygen. I still use a concentrator when moving around home and a portable unit when out and about. I started slowly with the elliptical, treadmill, table top arm circler and weights. Now I’ve been able to increase  my endurance and work load for an hour twice a week. The nurses and respiratory therapist are constantly monitoring: blood pressure, o2 levels and heart rate throughout the workout. I look forward to my sessions each week.

    • #30583
      Tom
      Participant

      I started Pulm Rehab in late 2020 but had to interrupt it to have lung surgery in May of this year. I absolutely believe that my stamina was improving and my ability to perform the exercises was advancing in both time/duration and difficulty (ok, barely, but yes).

      Complications from the surgery, including 2 damaged intercostal nerves, have prevented me from resuming PR. I receive between 4 and 6 nerve block injections every 2 weeks to manage the pain and even with the shots use lidocaine patches, tramadol (as needed), Tylenol (1500mg x twice daily) and Motrin (1200mg 2-3 times daily) to get close to comfortable.

      Unfortunately the nerve damage in my ribs affects my ability to do most of the cardio at rehab. Weights = painful. Hand cycle = hurts. Treadmill = yep, ouch. So it is likely that until the pain doc either ablates the nerves or we identify a better, long term option to the injections, I won’t be going back to rehab.

      I’d appreciate any suggestions on exercises I can do at home that won’t send me into painful regret (ok, that was dramatic but kinda true). I could use to drop some weight in preparation for a shot at transplant and sitting in front of a tv every day isn’t helping one bit.

      I don’t mean to come across as whiney but I’m really stuck in a crappy cycle of knowing I need to do more but having legit limitations because of the pain issues and not getting the pulmonary and general physical exercises/exercising I need.

      Anyone else here from NY?

      Thx, Tom

      • #30609
        Phyllis Della-Latta
        Participant

        Tom, Sorry to hear you needed pulmonary surgery. I am sure you can start your exercises alittle at a time. BTW, we live in NYC.

    • #30608
      Connie Lum
      Participant

      I was diagnosed with IPF a little over 4 years ago. I am on Esbriet and have no symptoms. I was tested for IPF because my brother had it , he was diagnosed in April 2018 had a transplant in July 2018. My other brother and I were positive for IPF. I have no issues but my brother has a steady decline . I was the most active of my brothers. I continue to be active walking at least 3 miles 5x /day. I do yoga and tai chi. Yoga breathing is a great way to strengthen your lung capacity but it takes practice to learn to do it right. Try yoga breathing and see if it helps.

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