Tailored Exercise Programs Beneficial for Patients with IPF/PFPosted by Charlene Marshall on August 5, 2020 at 5:47 pm
We’ve talked about the topic of pulmonary rehabilitation in our forums community in the past, but it’s something that new members can always learn about and hopefully others benefit from the conversations as well. I am patiently waiting for my transplant center to start organizing pulmonary rehabilitation programs again, as I really benefit from them and want to start another 12-week round.
It’s helpful to hear others’ experience with pulmonary rehabilitation, but literature supporting these types of programs is always good to review. A recent article posted to Pulmonary Fibrosis News talks about tailored exercise being beneficial for PF patients. This is especially true pre/post lung transplantation, which this article reviews using a case study of a 56-year old man diagnosed with IPF.
Amid the COVID-19 pandemic, it has been harder to participate in pulmonary rehabilitation programs. However, there are some online programs that can help you maintain gentle exercise from home. Check them out HERE.
Have you participated in a pulmonary rehabilitation program since your diagnosis?
If so, was it beneficial?
MemberAugust 6, 2020 at 9:46 am
Pulmonary rehab is fabulous and I once was interviewed for a British Lung Foundation video that promotes it in doctor’s offices around the NHS. It’s very clear that my PF has progressed while in lockdown and I just had a series of medical appointments confirming this. I am sure I am also less fit than I was because of not going to my pulmonary rehab sessions. The British Lung Foundation has an online series of videos that you can do at home, but it’s just not the same as being there in person. For some time, it was my 2x a week excursion out and seeing familiar faces and having a laugh was just as important as the exercises. I don’t know when they will start up again – we’re all fearing a new wave is bound to arrive here in England. But I have been doing an online gentle yoga class via Zoom and I love it!
MemberAugust 6, 2020 at 3:39 pm
I do not have a tailored program I do walk and ride exercycle for about 10 – 15 min. a day Because of energy level that’s about all I can do. So many days I do not have enough energy to do much more. I am 73 years old had IPF for 4 years but am doing pretty good just tired many times.
MemberAugust 6, 2020 at 3:51 pm
Yes I have participated in pulmonary rehab for over 3 years and it is the best.
Actually one of the reasons I am keeping consistent with my baseline while taking OFEV to help slow the progression.
unfortunately, since Covid they have shutdown pulmonary rehab and I really miss it.
I go on more walks and have a stationary bike that I exercise with but it doesn’t take the place of pulmonary rehab at the hospital.
so if you have the chance, DO IT!
you will feel so much better,
MemberAugust 7, 2020 at 11:43 am
Kudos to you for being able to do that – I know it is not a small thing to exercise with a lung condition. Great job for doing it, even when you’re super tired. Keep up the great work and thanks for sharing.
MemberAugust 7, 2020 at 11:45 am
Thanks for writing! I remember the video you were recorded in from the BLF, I think you shared it with me before, I’m so glad you were able to do that and that pulmonary rehab has proven to be beneficial for you. It is for me as well, and I am really eager to get going with it again, but we’re worried about a second wave as well. Kudos to you for continuing to exercise online via Zoom, that’s great and I’m so glad to hear you’re enjoying it 🙂
MemberAugust 7, 2020 at 11:47 am
I completely agree with you re: pulmonary rehabilitation benefits! Working out at home doesn’t give me the same effect as the program does, but it is better than nothing right now with the pandemic restrictions. I’m so glad you’re still able to do some exercising as well, kudos for your efforts there. I’m finding it harder to do, as I love the guidance and support at the rehab center but I know it is important to continue too! Thanks for sharing and here’s hoping we can go back to it soon. I agree with you, that if folks get a chance to participate in a pulmonary rehab program, they should jump on it!
MemberAugust 11, 2020 at 2:51 pm
Yes, i have been participating in pulmonary rehabilitation for the past three months at our local hospital and found it extremely beneficial! It has been paid for by Medicare so I’ve told the girls they are my all expense paid for personal trainers. I feel very blessed to have had this opportunity. This is a timely article for me since tomorrow is my last scheduled visit. I’m now trying to figure out how to keep myself going while not having access to them as a resource. I have done some of the Boot camp 101 and found the education part of it helpful but I need more than that. I need a tailored pulmonary/cardio program as a sustainable lifestyle if i hope to prolong oxygen and end of life. I’m 67 with advanced ipf and hope by keeping active and physically conditioned i can have a few more years of a good quality of life. I don’t enjoy exercising, that’s my problem. It’s certainly easier when you have someone there telling you to do this and that. At home on my own i fear it’s way too easy for me to give in and say…” I don’t feel like it today”. Then before i know it a week has gone by with no exercise.
Suggestions are appreciated and thanks for sharing.
MemberAugust 11, 2020 at 4:23 pm
Greeting from SE Australia where so far this year we’ve had fires, covid and now floods.
While I dont have access to any structured pulmonary re-hab groups, out in the bush abit here, our govt provides an exercise physiologist for us returned servicemen. I go to the gym twice a week for strength, aerobic and balance exercise. We finish off each session on a dreaded rowing machine, one minute on one minute rest and record the distance. I forwarded the paper on re-hab mentioned here to the EP.
I also swim in the ocean, I feel the swimming has reduced the rate of deterioration in my lungs, as you are forced to get sufficient air in and out in that brief moment your mouth is out of the water.
MemberAugust 11, 2020 at 4:38 pm
Hello Dawn, now that you are ending phase 2 pulmonary rehab you should be able to sign up for phase 3 pulmonary rehab. This portion you will do on your own at the same facility if they have it. It will be an out of pocket expense similar to paying for a gym membership. They should be able to formulate a program for you there. You will still be accountable and the staff will be there to answer questions or give you the motivation you need to get through your exercise regimen. Take care, Mark.
MemberAugust 12, 2020 at 9:48 am
So nice to hear from you – I think of you (and the beautiful country I feel is my second home) often and wonder how you’re doing! Thanks for writing.
I had no idea Australia is now experiencing floods…. this year can’t end soon enough!
So glad you’re able to continue some exercise and rehab programs amid everything being closed for COVID. I am doing the best I can to do this as well, but it isn’t easy. Kudos to you! I wish I could swim in the ocean, enjoy that, I’m sure your right, that it helps force the function of the lungs and the salt water is likely helpful too (though no proof of this of course).
So glad to hear you’re doing ok – keep in touch!
MemberAugust 14, 2020 at 8:03 pm
Pulmonary rehab was so boring for me ? I have always been active,gone to the gym,etc. all my life. Always my exercise was outside based. Training horses,then dogs,running agility,tracking etc. working my border collie on sheep…so my emotional painful struggle is trying to get excited about exercise inside?I have a couple of good programs from rehab, those exercises are ok,but what about the cardio? How do you manage that? I have gotten my wi out and tried using that,but lord it is boring!I have been doing some breathing exercises like Che gong but not every day. Do you try for 7000 steps? Do you do cardio and the rehab exercises? Then what about cleaning house? So I would love to hear how people handle their daily exercise
thanks in advance
if you are wiped out one day do try the same the next day?the docs keep saying exercise
MemberAugust 15, 2020 at 12:42 pm
Thanks for writing to us and sharing your experience with exercise! I agree with you, it really is difficult to get excited about indoor exercise, especially when you’re used to being outdoors and love it. There might be some exercises your rehab specialist can recommend still outdoors for you – I’d check with him/her :). Cardio I do on a treadmill, and while I wish it could be outdoors, it is safer for me to do inside and a bit more controlled. I don’t do a lot though, mostly just walking. I try for between 8-10K steps per day, some days I make it, other days I don’t. Not sure if this helps, but I know lots of other comments are added above about how people manage exercise with this disease. Thanks for writing!
MemberJuly 6, 2021 at 6:46 pm
I would like to wake up this old thread, regarding exercising, if I may. Been dealing with IPF for 6 years, and spent 2021 getting ready for TX at UVA. I have learned that exercising 30 minutes a day is better than any medicine. Primarily; stataionary cycling, and walking (treadmill). Finding that sweet spot where Your oxygen flow is 90%+, while exercising at YOUR PACE. My question, is what exercise prepares you for POST TX. You have just had the surgery, and it’s time to rise from the bed. To use the bathroom, get in and out of a chair? I understand squats is one, and leads to others that are beneficial. Thanks!!! (If not posted in right spot, please advise)
MemberJuly 7, 2021 at 10:09 pm
Great question, thanks for resurfacing this thread and conversation. I completely with you entirely re: the benefits of exercise and how helpful it is when we can tolerate and maintain healthy 02 sats, as much as possible. I suspect each post transplant rehab or exercise regimen might be a bit different, depending on the center. There likely are some similarities in exercises too but ultimately I think it will depend on the patient’s recovery, their health prior to transplant, level of complication of surgery etc. Its a really good question, though I suspect it might be unique to each transplant center so I’m not sure if anyone can answer with certainty? Hopefully someone might have some insight for you though…
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