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Exercising When You Have a Chronic Disease
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@coreeta5150
Kindly read some of the other forums here such as laser, or supplements and herbs. I would suggest you investigate serrapeptase as it has benefits to the lungs and the gut. Let me know if I can help…
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Steve,
I’ve been using Serrapeptase for about 6 months now. I’m always looking and willing to try new things that may be beneficial to me. Thank you
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@coreeta5150
Coreeta,
Good for you. I started using it about 8 or 9 months ago with immediate results in the lungs and a small side benefit of many feet capillary varicose veins diminishing. So I have slowly increased the dose to two 205,000 SU’s daily – far away from food and other pills especially time release meds…
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Coreeta –
Not sure where you are located – in the US or Europe. I am in the US and in my mid late 60’s. I was diagnosed with IPF last month. Not on meds yet or oxygen. I started pulmonary rehab 2 weeks ago. My oxygen levels are good but they are usually higher after exercise than before I start exercise. We have lots of different ages in the classes. Only 2 of us have IPF. We have people that are on oxygen and others that are not. Everyone seems to do well with the exercise part of the class – we do treadmills, an arm machine (my least favorite) and a recumbrant bike or another bike type where you row the arms and move the legs at the same time. Plus work out with light weights and stretching exercise bands. 2 days a week we also have education classes – nutrition, learning about lung diseases, etc. I am also not overly fond of exercise but have been dieting for the past 9 months – eating a basically vegan diet and have lost weight and kept it off. In the past 8 weeks I have been trying to walk at least 2,000 steps a day. I find I am enjoying the exercise. Please get into a pulmonary rehab program if you can. Some of the people in my class have done rehab a couple times. One guy was just put on the transplant list at Ohio State University in Columbus, OH. Everyone works at their own pace. Some of the people are able to do more than others. We have had 2 people recently “graduate” from the program and all have increased the length of their 6 minute walk test. We even get a certificate with our name on it.
Marianne
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Hello Marianne,
Thanks so much for the information. Although the thought of exercise and being more active is a little unnerving, I’m also very excited about seeing what type of progress I can make. Even a little improvement is a win for me. I’m in the US, I live in California. Last year I was referred to the University of California, Los Angeles medical center to be evaluated for the transplant process but at that time it was still too soon. During that time, however, I had began dieting and even with going through my open lung biopsy I managed to lose about 30 lbs. The challenge for me arose when I was diagnosed with lupus and began taking steroids. The weight gain was almost instant. Not only did I gain the weight back that I had lost but I also packed on an additional 10 lbs on top of it off. So, I’m hoping that this Rehabilitation program will be beneficial for me, considering not only the exercise aspect but the nutritional information portion as well. I’m really glad that I found this forum because it really does help to connect with people who understand and can relate. I know my friends and family are in my corner but it’s really difficult for them to really understand the day to day struggle of it all. Thank you so much for your information.
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I have done pulmonary rehab 3x and now attend a follow up class. It was a life changer for me I can’t recommend it highly enough.
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Cooreta, Steve and Susan,
We all differ and can take hints from each other. I am 74 and was diagnosed with IPF in January 2017 and went through more than a year of inactivity before I realised that I have to get exercise and lose weight as I might live longer than the predicted three to five years. I started walking further every day and have done up to 10km per day and lost 10kg eating well, but differently by cutting out carbohydrates and eating as much fatty meat and salads as I liked. I even cut out wine for a few months, but now I am back on it and lose weight much slower. I am not on oxygen yet, but my readings on the oximeter drop to 87 when I walk uphill fast. I am on the Indian version of Esbriet {Pirfenex) as Esbriet and Ovef are not allowed in South Africa where I live. The tablets seem to have a stabilizing effect because my CT scan did not show an increase in scarring this January.
I am going to follow Steve’s advice and start taking vitamin D and Serraptase. I also live in the mountains on a farm Sue, and was near you in Seté and Villefranche three weeks ago. Good luck negotiating the slopes.
Best of luck to all of us!
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Hi Piet
High doses of Vit D are definitely beneficial, I take it once a month and instantly feel more capable.
I was diagnosed in May 2018 and given 2 to 3 years !! want to prove them wrong. Because I haven’t got IPF but PF very different reactions so I believe, plus others, there are no tablets that would be of any advantage, in fact to take them could be dangerous according to some research, no inhalers either, *symbicort* nearly killed me. there has been VERY little research into CPFE as it was only recognised in 2005 almost all research focuses on IPF.
I agree a low to no carbohydrate diet is beneficial and for me essential as I now seem to be allergic to wheat (maybe come out in sympathy with my allergic dog lol.) gives me serious acid reflux which as we know is not good for any one with serious lung conditions. Don’t drink alcohol at all, never have. Still need to lose a little more weight, hard on even a low dose of steroids though.
This heat wave is hitting me hard breathing wise, even on O2 can’t get much above 92 and go as low as 82 on effort. Been unable to walk the dogs much, not that they want to go out either even the evening have been no lower than 37° one day we were hotter than Death Valley !!!!! unheard of.
Hope you enjoyed you *petit sejour en France* Piet, it is a beautiful country. Used to have relative in South Aftrica, my uncle (fathers’ brother) and his family lived in Johannesburg, haven’t heard from any of them since my father died.
Keep up the good work, sounds like you are doing well. Ihave a little holiday home that I rent out if any one fancies a little holiday here, mates rates lol http://www.gites71.com reference 1494
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Hi Piet,
I strongly recommend you investigate serrapeptase to ensure you get the right stuff as it is measured in SU (serrapeptase units), not IU’s. Next never – did I say NEVER – take serrapeptase anywhere close to other medications you may be taking. Serra eats dead protein – that’s what pills are so if you have time release like I do with a couple of things that I take, it could be hard on you. So I try to avoid any other pills for at least 3 hours or more and food for 2+ hours. I take serrapeptase 2X daily.
Do you know if you have low vitamin D? If you are over 50 and not in the suns a lot then you probably are. I was taking 3000IU but dropped it to 2000IU recently as my last D test result was in the normal range. AND I always take D3 with vitamin K2 m7, 100 – 200 mcg daily. K2 puts the calcium generally where it belongs – the bones.
Hope that helps…
Steve
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PS – the B complex vitamin I take has helped me more than the D3 but maybe because I take a somewhat low dose of D3…
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Long time runner that first discovered a problem with my breathing because I was a runner. I had been shut down from exercise after 4 eye surgeries in 2008. When I was cleared to start again during my first run I labored to breath. Thought it was being shut down for so long. Not long after I had an episode at night where I couldn’t breath and went to the ER. My first medical diagnosis of IPF. Here it is 2019, some 11 years later and though my legs can still run my lungs can’t keep up. So you do the next best thing, you walk. I’ve stayed active throughout the whole progression and am determined to continue as I feel it’s what has kept me going so long. Just came back from walking a little over 3 miles on the treadmill at the gym and some light weights for toning. My doctors tease me that I’m the healthiest sick patient they have. Have to stay positive, laugh and stay active. My biggest issue now is loss of weight from taking Esbriet. Nothing taste good anymore but know I need to eat. Doctor has suggested small meals more frequently which we do. Not one to give up so I’ll be exercising and fighting as long as I can. Joined the group to see if there are tips I might pickup from others in the same situation.
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Hello Bob, thanks for reading and commenting. Your story is great to hear. I totally agree with being active is helping your situation. It sounds like you are doing great other than dealing with weight loss. Hopefully as you take Esbriet longer your body will adjust. Keep up the good work. Best wishes, Mark.
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Hi Bob & Mark
I was a triathlete and swimming was my best leg, I’m no longer running or riding but the swimming continues, at a more leisurely pace. I wear a tri wet suit which provides buoyancy and a level position in the water, so I dont have to kick, saving a lot of energy. My swim times haven’t deteriorated all that much, I’m still in the middle of the age group pack, but it is becoming a lot harder. Swimming in fresh water is even harder because of less buoyancy.
Other than swimming we walk every day, we’re on holidays now in Brisbane we did a nice 6km walk today through a forest park in the suburbs with plenty of hills and a few stairs and no we didn’t see any koalas.
I live remotely from the main medical facilities in Australia there is no dedicated pulmonary rehab course available locally, when at home I go to the gym 3 times a week and do strength and cardio workouts, and breathing, overseen by an exercise physiologist.
The whole pulmonary team supervising my treatment recommend as much exercise as you can comfortably achieve, my cardiologist also suggests that I take up singing and join a choir to improve my deep breathing. I think the coughing would unsettle a choir somewhat.
I’m just lucky my level of IPF allows me keep exercising
Cheers
Mal
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Hello Mal, your story of keeping active is great to hear. You have a lot of energy! Your swimming and walking routine is above standards. I know this has to help in your battle against pf. Its a funny thing, lungs vs. heart; lung transplant doctors encourage as much activity as the body can stand whereas heart transplant patients usually have to take it easy and watch their numbers. You keep going Mal. Hey, and no kangaroo boxing! Best wishes, Mark
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Hi Mal
I wholeheartedly agree with the singing thing, I have a CD, on repeat, in my car and I hum to the tunes and it really does help with the breathing, I hate wearing my oxygen in the car so breathing to the rhythm is extremely helpful, as I have a tendency to mouth breathe and too fast, singing/humming make me breathe from the right places at the right pace. Wish I could do walks again, now even on the flat I am down to 2kms, any more and I hit a wall even on 5l oxygen, I plummet to around 69 blood oxygen Hope you keep up your activity as long as possible
Cordialement Sue
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Hello Susan, keep active but please watch your oxygen saturation. We don’t want any other organs affected by deprivation of oxygen. Keep up the singing and being conscious of your mouth breathing. Mouth breathing requires more oxygen. I still try to focus on nasal breathing when i exercise or perform any activity. It actually helps fighting off infection. With the mouth breathing outside elements go directly into your system and at least with nasal breathing there is some defense of outside elements. Best wishes, Mark.
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Just back from the gym and two workouts. Did 1.5 miles in 33 minutes in the first set then did some muscle toning with weights to try and stay toned, it all works together. Then back on the treadmill for another 1.5 miles in 30 minutes with some more resistance weights. I’ve never had to be on oxygen and my readings are always high when checked. I think it’s because of my life long training. I do see some reduction now but I still go at it. I can run if I wanted but my lungs just can’t keep up with it so it’s mainly walking and you can see my the times I do well. There are healthy people who can’t do what I’m still doing. So happy a friend of mine and I started a routine back in 1977 of learning how to run to quit smoking. I’ve been with it every since. My IPF isn’t from smoking or as many know Idiopathic means they don’t know what it’s from. I have it and just have to continue to exercise and eat well. I’ve lost more wait than I or the doctors want me to so am now drinking weight gaining smoothies in addition to eating what I can. My Esbriet has affected my taste buds. Nothing taste good but know from friends who have had cancer that you have to make yourself eat. Mine it just trying to find foods that still taste good. My family doc suggested I eat small frequent meals which I do. It’s a battle and it’s not lost until you give in. No plan on doing that anytime soon. I’ve had this since 2008 so 11 years in and plan on several more. One draw back from being this active is I have not been considered as transplant worthy yet. Kind of a good thing/bad thing deal. I’ve been to Mayo Clinic in Jacksonville a couple times and probably getting close to another trip within the year. My lung doctor likes me to go up and let them look me over as another set of eyes. One day at a time. Happy for every day I have. Just celebrated 48 years of marriage last week and hoping for many more.
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Hello Bob, holy smokes you are getting your cardio on! You are in immaculate shape. There is nothing wrong with being too healthy. Keep your trips to the Mayo Clinic going. There is nothing wrong with them knowing your name and how you are as a person. Keep being happy and enjoy life as you have been doing. Congrats on your 48 years of marriage. Mark
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Hi Mark
Thanks for the encouragement, I know I have to be very careful re sats but had no idea I was plunging that low until I hit *the wall* last Saturday, very very scary. I among other things have internal version of systemic scleroderma and only one kidney so every thing is trying to work against me Been a mouth breather all my life find it hard to keep it shut. Yeh yeh can almost hear all the men laughing and making comments about women being unable to keep shut, lol I used to be so active, only 3 years ago would take the dogs, had 8, for 10 kms most days, even my cat (he was 20 when he died) would join us, having to hand my remaining two over to a neighbour daily to walk them, is so hard. Industrial CPFE + +, hit hard and sudden in 2018 not giving in though even with a very poor prognosis, I WILL defy the odds. Is there any one else on here with CPFE and other lung diseases ?
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Hello Susan, from my recollection I do believe there are some members who suffer from other lung diseases. Hopefully they respond to your inquiry. Maybe contact your physician and see if your oxygen should be increased. Again, keep up the good work. Walking is the best exercise you can do. Mark
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Hi Mark
5l is the max for my back pack, I have only been on oxygen since this May !!!!! I don’t use it at night as all my readings come back at 97 overnight but as soon as I start moving I drop quickly, even getting bathed and dressed has me at 82. My next appointment with the pulmonologist is on August the 20th, 3 difference RV’s all on the same day. Wont be able to get anything before that, not that I want to go into the city as they make me feel really ill with all the pollution.
I do seem to be the odd one out with CPFE, Bronchiectasis plus Systemic Scleroderma, to my mind 4 diseases is being just plain greedy and probably all caused by my old job, my husband worked in the same place and he died of lung disease 7 years ago, his was very fast, within two weeks of feeling breathless, though I do believe he had symptoms before the exacerbation.
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Hang in there Susan. They might have to place you on E tanks and an oxygen concentrator because of the drop in o2. The same thing would happen to me but I was on 4 lpm on rest and 6-8 lpm on exertion. I assume they will give you a 6 minute walk test when you go to your appointment. You are correct with the greediness of you having 4 separate lung diseases. Sorry for your husbands passing 7 years ago. Fighting for your next breath is something that people should not have to endure. Mark
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I have 2 concentrators one static and the back pack plus a tank in case of power cuts.
Yes 6 minute walk test, at the main hospital it is in round a hall, easy, at the hospital where I was sent this May it included stairs, 2 flights, there, I failed miserably whereas in the big hospital, on the flat, I sailed through. !! I will also have lung function tests which I sail through, because of the CPFE, I appear to have good lung function until they do the sats and then I have extremely poor oxygen exchange and an inability to get rid of enough carbon dioxide, especially if I don’t use pursed lip breathing. I don’t really understand the French version of the results of the lung function tests because they are nothing like the charts you usually see and of course all the abbreviations are different.
Bien cordialement Sue
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Hello Susan, keep concentrating on your breathing, I hope you have positive experiences at the doctors appointments and your walk test. Best wishes, Mark.
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Mark,
Not sure about immaculate shape. I have my moments, I just have to keep pushing on. There are times when my breathing gets spooky enough that I think I need to go to the ER. Just try to calm myself down and work through it. Keep looking for things that might make me better. That’s one of the reasons for joining this forum to see if I could pick up any tips.
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Bob, you are totally correct. Keep pushing and keep active, and control what you can. Mark
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Hi Mark
What are E tanks please. I have a tank but not sure if it is an E tank, it goes up to 6l pm.
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Hello Susan, E tanks and D tanks are the metal cylinders that store oxygen. There are other sizes as well. I mentioned these because they are continuous flow. Here is a link outlining the different sizes.
https://www.phc-online.com/O2-tank-duration_a/151.htm
Thanks, Mark
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Hi Mark
I have one of those tanks, it is for emergency use in case of power cuts. My static concentrator is continuous flow and would go up to 5l pm , not on that yet but am on maximum 5l pm and struggling on the back pack I suppose if need be I could get machines that go higher, don’t want to need to go higher after only a couple of months but it looks like that is in the near future. The only place I can stay in a safe blood oxygen ratio is in bed when not moving, so frustrated and disappointed, I think like most people, I thought oxygen would help me be more active, has made little difference to my capabilities except my blood is better oxygenated so organs protected
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Hello Susan, unfortunately the saturation drop and rise of heart rate is an all common scenario of our disease. Before transplant, I conducted all of my exercises sitting down because of said scenario. Mark
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I know exercise is just as important as the IPF medicine, and good nutrition. I use a recumbrant bicycle as my main source of exercise. I do 25 to 30 minutes a day (5 miles). With this bicycle, I am working my legs and arms. On days where I am able to get outside, I will get my exercise from walking and working around the farm, or swimming at the river. With the high humidity in Virginia, I have to pick my battles in the summers as to the type of exercise (indoor, or outdoor). As others have stated, it is a pleasure and reward to see those 02 numbers go up after a daily exercise. I am not on oxygen, and I am taking the full dose of Esbriet daily, for the last 3 years. For those who may want a good read, regarding this topic, pick up the book; ULTIMATE PULMONARY WELLNESS by Dr. Noah Greenspan.
As Dr. Greenspan noted in His book. Exercise is like putting money in the bank. Every deposit, regardless how large or small it is, adds up over the long haul. Wish all the best!!!!
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Hello Rob, thank you for your input. Keep up with your physical activity. Sounds like you are doing great. Best wishes, Mark.
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Hi Susan I used to use to sing when struggling in a hard run, like at the end of a triathlon, any song with a March beat will do, it keeps your in rythm and was a distraction, and helped me keep the pace up.
Another exercise resource we have is running, (now walking slowly in my case) with the Hash House Harriers, a world wide slightly irreverent running group. We travel for about 3 months each year and wherever you go there is usually a Hash group to visit. Last night we walked with a hash club in Brisbane, in avance one of the members sets a trail of arrows, marked in chalk of flour on the road or track. It was a 5km walk through the suburbs and parks not far from where we’re staying. After the run they gather for a small meal and couple of drinks, and you get to meet locals from the area in there natural habitat, and not members of the tourism industrys. So there are social and exercise benefits.
Cheers
Mal
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Hi Mal
I do sing/hum in the car when I haven’t got my oxygen on, Phil Collins fan, as you say, the rhythm keeps you focused on breathing properly. I used to walk my dogs 10kms most days, now struggling on the slightest incline of which there are many here in the mountains, nearest shops 12 kms away. Love this area but for some one with severe lung problems NOT ideal. I am alone, as the same chemicals, (now used in chemical warfare) the damage take years, 20 to 25, to show up rather like asbestosis, killed my husband quickly, so far I have survived 18 months longer than he did so doing good, no intention of being housebound so I drive to flat areas to walk even if just round the supermarket.
Good on you for keeping going, even at a slow walk, I wish supermarkets here were bigger, so I could walk further, they are the only flat large spaces for miles around. No idea how far I walk going up and down every aisle !!!, shame I can’t take the dogs, my neighbour now walks them for me
A bientôt Sue
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Hi Mark, Not ready to just sit and exercise yet, just mowed, ride on mower, OK yes so sitting down lol, my land, 2,000m2, and like every where here it is no where near flat, very very steep gradients in parts, can’t wear back pack, too bumpy, so have to just wear a mask, do about half an hour then stop for a top up of oxygen, get down to about 81 blood oxygen, then another half an hour, stop, then finish off, so quite a work out, going up and down the steep gradient is like riding a horse, lean forwards going up and backwards going down so as not to tip over. Tried to add a photo but failed. Just wish I could walk round here, it is so beautiful up in the forest.
I am not a candidate for transplant, one) age, 73, two) the scleroderma is pretty far reaching internally, funnily not many external signs on my skin, so would attack new lungs. three) not sure I would want the op, in fact I know I wouldn’t..
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Hello Susan, you are still very active even sitting but please watch your o2 sats. Mark
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Hi every one. Saw the pulmonologist on Wednesday, to say I was shocked by what he said is an understatement, I couldn’t even argue, just wanted out, utterly defeated and depressed. I don’t think he even looked at my notes. He said he is arranging a three times a week sessions of *heavy* exercise as I don’t do any and with my lung function at normal I should do more !!!! Pardon!! I walk my dogs every day, do housework, look after my holiday home, walk round the shops and am rarely still, obviously not enough!!. He wants the *heavy* exercise to include skipping and running. I have CPFE so walking up the slightest slope, WITH, 5lts of oxygen a minute causes my blood oxygen level to drop to dangerous levels, my lung functions are nearly normal but my gas exchange is crap thanks to the peculiar way two of my diseases interact with each other. These sessions are supposed to start in February, I live in the mountains so a three hour round trip three times a weeks is going to be *fun*, not. February, snow?.. I am perfectly willing to exercise in fact I want to but with the guidance of some one that understands the peculiar workings of my condition as it is not like IPF nor COPD. I am 73 and arthritic with a few small scleroderma balls on the soles of one of my feet, skipping, mat running? ouch.
I have a pre appointment next Friday with the exercise guy, just have to hope he knows what he is doing. Might go to one and see what is what. So disheartened I almost want to give up, can’t got dogs.
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