This topic contains 66 replies, has 14 voices, and was last updated by  Mark Koziol 1 month, 1 week ago.

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  • #18989
     Mark Koziol 
    Keymaster


    Hello forum members,

    Since I have been on a healthy living kick the past several months, I have begun devoting time to reading more publications and articles on wellness. As a former college athlete, I developed a fondness for working out and keeping in shape. I had to keep in the best possible shape so I could compete on the field. I now have to keep in the best possible shape in order to stay “above ground”. As years go by, one’s fondness of putting yourself through gruelling workouts went away. Basically, life took over and got busy. So many commitments and so little time left over to workout. After a while I would be like most people; make a new year’s resolution and after a couple of weeks quit because the motivation and  desire went away.

    An awakening happened when I received my idiopathic pulmonary fibrosis (IPF) diagnosis and subsequent exacerbation. I was told that a requirement to receive a lung transplant was that I must be physically active in either phase II or phase III pulmonary rehabilitation. I was also told 80 pounds needed to be lost to be in the required BMI range. Working out was now a live or die situation. At this point in my health, I was not able to do any type of exercise while in a standing position; all of my exercises were done sitting. I feel proud to say I exercised right up to the day I was called in for transplant. At this point in my illness, I was on 6-8 lpm of oxygen. I knew the surgery would be tough on my body physically, and it was.

    The article I read is titled Living With a Chronic Disease? 4 Best Tips for Exercising. The chronic disease part caught my attention and I felt this would be an appropriate topic for some of our members. I know some of you participate in structured pulmonary rehabilitation programs and some workout on their own. Some of our members choose not to work out for whatever reason they have. The idea of working out while suffering from this awful disease can be frightening. From my own experience I was scared; didn’t know if I was going to break out into a 45 minute coughing episode or collapse. The challenge is daunting, but like with anything you can build your confidence up with repetition.

    The article is concise and offers real life suggestions for chronic disease sufferers. Remember, we all can do something to improve our lifestyle and hopefully our longevity.

    I am curious to hear from any members who have not yet started an exercise routine. If so, why have you chosen not to exercise?

    Can our members who have begun a workout routine tell us what their motivating factor was to begin exercising?

     

     

  • #19025
     Jeannie 
    Participant

    I have not started an exercise routine yet. Number one reason is I am still recovering from a hospital stay. I am doing some physical therapy and I am gaining some stamina. I plan to start walking as soon as I get a portable oxygen concentrator.

    • #19026
       Mark Koziol 
      Keymaster

      Hello Jeannie, thank you for commenting. I hope you feel better quickly. It’s important to have your injuries healed so you can maximize your routine. I know you will feel stronger after a couple months of working out or completing a pulmonary rehab program. Thank you again. Please keep us up to date on your progress. Mark

  • #19071
     Susan Howitt 
    Participant

    I was trying to keep myself as fit as possible walking my dogs, same as last year this time I have just had an exacerbation and spent a week in hospital, came out yesterday, with, shock of my life, a portable oxygen concentrator, yes was expecting/hoping for that but also a home oxygen concentrator an spare tank in case of power cuts, have to be on oxygen 18 hours a day  from none at all last week!!!  I live in the mountains so every day is a work out just getting from one place to another, mostly I have to use the car to get to any where flatter so as to be able to walk the dogs, back down to 15 minutes but want to get back up to an hour, for their sake.  Any one any tips on how basically to get legs back working properly, can’t do too much yet standing

    I’m 72 coming up 73 widowed so no help, got PF, Emphysema, Systemic Scleroderma and Bronchiectasis, greedy me !!!!

    • #19073
       Mark Koziol 
      Keymaster

      Hello Susan, thank you for commenting, I am sorry to hear of your  current health troubles. If this is a possibility, I would ask your doctor if he could place you in a pulmonary rehab program. This will get you off to a start. If that is not possible ask your doctor to put you on an exercise program that will build the stamina I. Your lungs and whole body. There is a columnist; his name Noah Greenspan, and writes for Pulmonary Fibrosis News. He is a respiratory therapist. Please look him up and he offers suggestions  regarding pulmonary rehab. Thank you, please keep us up to date.

  • #19074
     Susan Howitt 
    Participant

    There is no way I can go to rehab here, kilometres away and they want me there for a month, can’t do that, got dogs, on my own, can’t expect my daughter to stay here that long she has a living to earn Dr also one hour away in a big city, don’t go to those unless I absolutely have to, I do have the advantage of the purest air here.   Need to find out exactly what it is that causes these exacerbations at this time of year, surely it can’t just be pollen? as three weeks ago I could walk for 3/4 of an hour!.

    • #19086
       Mark Koziol 
      Keymaster

      Hello Susan we may have a solution. Kim Fredrickson is a columnist for PF News and she wrote a column regarding online pulmonary rehab. There is a fee involved but she liked it. The title is: The Benefits of Doing  Pulmonary Rehab Online. Noah Greenspan is the person facilitating the rehab and he is also a columnist for PF News. Noah is a respiratory therapist and I have also linked his columns. Please keep up us to date on your condition. If you click on the highlighted words it will take you where you need to be. Best wishes, Mark

       

  • #19104
     Susan Howitt 
    Participant

    Hi Mark

     

    Thanks for trying, had a good look at all the links etc, I’m in the wrong country so couldn’t pay, wrong currency,  plus if I could pay would be unable to access a fair bit of the programme ie phone calls, videos, they don’t seem to be compatible from US to here maybe different frequencies, don’t know.  I am determined to get myself fit and have now found a flat area (several kms from here) where I can exercise the dogs, get my back pack oxygen concentrator tomorrow so can see how it goes from there,  Haven’t been too long out of exercise, a month, so hopefully not too much to ask of my lungs now that I am on oxygen, 5l pulsed.

    Thanks again  Sue

    • #19106
       Mark Koziol 
      Keymaster

      Hello Susan, it’s to bad you can’t get the online program. Walking is probably the most beneficial exercise you can do. I’m sure if you google online rehab programs you can probably find one that is free. You can also search for exercises that you will be able to do at home. I would also call my doctor and ask him for an exercise program. He should have access to one that he could email you. Susan, keep in touch and best wishes, Mark.

  • #19112
     Susan Howitt 
    Participant

    I cannot go to rehab,  they are residential here and I have no intention of leaving my dogs in kennels, they are rescues and yes I do walk, well until this recent exacerbation I did, mountainous here so now struggling to get back into the hour long walks I used to do, hopefully when I get the back pack for my oxygen (this morning) I will find it easier.  Here I am right out in the mountains and the care in the nearest small towns is minimal, they have never had one like me, foreign with 4 lung conditions at once, yep unique that’s me lol, so keep getting sent to big cities that make me more ill than before, cannot take the pollution. I am just going to have to work things out myself I think.  This will give you an idea of how backwards it is here, it is unheard of mostly to email, doctors and businesses rarely do it !!!!

     

    • #19118
       Mark Koziol 
      Keymaster

      Hello Susan, sorry to hear but walking is still the best exercise. You can start slow and work your way back up to where you used to be. You can also do resistance exercises in your home where you will not have to use any weights or other manipulatives. I have found a a program without using any weights .

      You can click on the highlighted area. This is a just a sample of what they look like. You do not have to do these exercises if you do not feel comfortable. You can always google resistance training exercises without equipment. Pick and choose the exercises you like, but try to incorporate all body parts in your workout. If you have some training bands they also help immensely. Mark

  • #19129
     Noah Greenspan 
    Participant

    Hi Susan:  I am sorry you are having difficulty.  The program is accessible anywhere and meant to be done on your own time regardless of location.  The only live session per week is on Wednesday evenings from 7:00-8:30 pm NYC time.  If you would like to join, please email me at [email protected] and I can help you access the program or feel free to call the office at 212-921-0214.  Be well.  Noah

  • #19132
     Susan Howitt 
    Participant

    Hi Mark

    Managed a short circuit this morning with back pack and dogs, disappointed, thought oxygen would help so much more on the inclines, but no 5l pulsed and I felt like I was still not getting any oxygen, so so breathless and very uncomfortable.

    Looked at the exercises in your link, there is not one I could do, can’t get up from floor, arthritis, I’m coming up next month to 73,  too dizzy to balance on one leg, oh lor aren’t I the moany one.  I do have an exercise machine where I don’t have to do too much of the work, just staying on the thing is a work out in itself as it shakes you about, lol,  different positions target different parts of the body, accidently found one that shakes up the mucus from deep down in the chest, helpful, the machine does have resistance bands.  Should use it more I know, motivation is severely needed so much more fatigue now than before..

  • #19134
     Mark Koziol 
    Keymaster

    Hello Susan, at least you tried today. I know motivation and fatigue are downsides to having ipf. How about we start slow maybe doing one exercise a day and building upon that. Hopefully this will help with your fatigue and give you the motivation needed to do it again the next day. Bringing up the mucus probably felt real good. I glad you found an exercise to do this. Listen you are not moany. This is just a problem of this disease. You keep going. Keep in contact. Mark

  • #19161
     Steve Dragoo 
    Participant

    Strangely enough, I have discovered mild to moderate exercise at the gym improves my O2 readings for a couple of days.  So I have been able to slowly add to my routine which has also surprised me.  But I do several other protocols that most likely enhance the gym results too.

  • #19162
     Mark Koziol 
    Keymaster

    Hello Steve, thank you commenting. Adding exercises slowly is still beneficial, you are being active. Keep up with your routine. Best wishes. Mark

  • #20057
     Wendy Dirks 
    Participant

    I am trying to get as much exercise as I can. I’ve been through a six week pulmonary rehab course 3x now and am now going to a follow up class. My problem is that afterward, I am completely exhausted. I generally come home and take a nap, anywhere from 2.5 to 4 hours! This week I was very active – I did quite a bit of gardening on top of a session at the exercise class and today I am suffering such extreme fatigue that I am feeling very low and discouraged. I feel like a zombie. I just keep telling myself, “This too shall pass.” I hope so, anyway!

  • #20064
     Susan Howitt 
    Participant

    You are quite right we need to exercise but yes so exhausting. A lot of the lung diseases have as a nasty addition, utter exhaustion. Here there is a heat wave at the moment and I just can’t summon up the energy to do anything as besides the heat it is hay making time and the pollen and dust are making life impossible.  I now can’t bend so have to just look at the weeds until I can get some one to spray them which I hate doing as it is such pollution.  I am on oxygen 18 hours in 24 and am fighting not to need it permanently, was so disappointed to find that oxygen didn’t help at all to get me up stairs and slopes, only protects my organs when my sats dip dangerously low.   I am determined to not give in which would be so so easy.

    • #20067
       Steve Dragoo 
      Participant

      @wendy-dirks, @reglois

      Hi Wendy and Susan,

      I am 70 and was on my own with this lovely disease until I returned to the Philippines last month. 11 months ago I found these wonderful forums and discovered there are a good number of people using supplements and alternative therapies to their significant advantage.

      I don’t know your ages but when we get older vitamin D can diminish and cause plenty of fatigue. So I take D3 with vitamin K2 m7. I added a good B complex vitamin 6 months ago and all three of these have helped me. For my lungs I started serrapeptase and it has cleared the mucus and even improved my capillary varicose veins on my feet (surprise). Next I added nattokinese successfully and started using a class 4 laser that helped a lot.

      When I returned to the Philippines I could not find a class 4 laser so I started Wei laboratories products with very good success 6 weeks ago.  Also I have not found a satisfactory O2 concentrator so I have been without O2 since May 20. In the USA the doctor took back my portable O2 in January as my tests were/are stable to slightly improving.

      I have had IPF since Oct 2016 and was progressing. So when I did PT  9 months ago I needed to rest. Now I do more than that almost everyday and no naps generally. We just returned from a 5 day trip to Malaysia and no O2 problems.

      I know adding each of these therapies has been successful as I tracked them the best I could (subjective) and look forward to my next series of tests when I return to the USA next year.  There are a couple other things I do that help too.

      No I cannot go full at it like 4 years ago but I have experienced significant improvement in the past several months with stamina and strength and hope this info will help you too.  There are lots of posts regarding some of the things I mentioned that may help you as well.

  • #20065
     Wendy Dirks 
    Participant

    Oh, Susan, I feel for you! We finally had to hire a gardener but I still try to do as much as I can.

  • #20066
     Susan Howitt 
    Participant

    Hi Wendy,

    That is all we can do, as much as we can,  doesn’t pay to work til exhausted, can do so much less, so the idea is to pace oneself, I am widowed so almost alone in a foreign country but my neighbours are such treasures, I have my nearest neighbour (think she has OCD) she comes in every week and cleans my shower for me, can’t do the tray, so yes I am very lucky. My daughter comes twice a week and cleans the floors etc, she is renovating her house and has to get it done before the onset of winter, was a ruin with only 4 walls and a roof, not even electrics or water, so she hasn’t much spare time and I hate putting one her, I get the logs in and have even found a way to stack (slowly) when I have a delivery that doesn’t involve bending, feet are so useful don’t you think? I have 2000m2 garden plus run my holiday home which has the same sized garden, I do the mowing as I have two ride on mowers, one for each place, wear a mask and don’t find that too tiring at all, my daughter cleans and sets out the gite as I find stairs impossible.  But yes I am lucky, there are so many worse off than me.   Wish you all the best   Sue

    Thing is don’t work til you drop, better to do your gardening in two or three stages with say an hours break in between

  • #20071
     Susan Howitt 
    Participant

    Hi Steve

    Thank for your reply. I will be 73 tomorrow, yay made another year. Got real diagnosis last year, in May, after five years of being told I was **asthmatic**. Gone down hill fairly fast since diagnosis and yes I know I have got a fight on my hands.  Can’t give up as I have 2 rescue dogs who are my world.

    I have industrial Pulmonary Fibrosis not Idiopathic Fibrosis, fair bit of difference re treatment (none really, I might just as well have asbestosis), plus Bronchiectasis plus Systemic Schleroderma plus Emphysema, my doctor prescribes me massive doses of vitamin D monthly, yes, that does help with the fatigue, plus I take vitamin B12 and B6 plus a clay compound, in tablet form, that has lung healing properties so it says, cannot for the life of me remember the name something like MNS. Not sure of its efficacity  so will not renew.  Looked up  serrapeptase  and it is cumin which I love, do take that a fair bit + add loads in Chilli Con Carné, home made, here not easy to buy much ready made here, take a ways as rare as hens teeth, though Mac Donalds came to the principal town here (long way from me) a couple of years ago !! and a pizza van come once a week to the local supermarket, progress?, not in my eyes. I also take a fair bit of ginger in fresh and candied forms.

    Wishing you the very best in your up coming tests in the USA.

    A bientôt  Sue

  • #20072
     Steve Dragoo 
    Participant

    @reglois

    Hi Susan,

    Serrapeptase is very unique. It is an enzyme from the silk worm used to eat dead protein (scar tissue, food, other pills) and is measured in SU – serrapeptase units.  It has been used for a few decades to enhance external scar healing and to help in the liver healing. It is not clear if it helps clear scar tissue from the lungs but it has helped me a lot. It is also a blood cleaner of sorts and needs to be taken away from food or other pills.  Hope that helps – Steve

  • #20073
     Susan Howitt 
    Participant

    Thanks Steve

     

    When I first looked it up in French, silly me should have gone straight to English, it said it was cumin, looking it up in English it is as you say, I think I will try it as I have absolutely nothing to lose and everything to gain, thanks again.

  • #20074
     Steve Dragoo 
    Participant

    @reglois

    Be careful with what you buy and when you take it.  For many people it will help in just a few days if you take it right.

  • #20075
     Susan Howitt 
    Participant

    Was going to get it from I-Herb eu

     

  • #20101
     Pamela Martin 
    Participant

    Here in  Dublin Ireland 🇮🇪 ILFA that’s the Irish Lung Fibrosis Association .. I was very happy to be involved with the making of a DVD especially adapted for lung fibrosis is has been very popular with our members and patients all over Ireland,

    I have had  IPF for nearly 10 years and exercising is major role on keeping me as healthy as possible I’m putting up a link I hope some of you might benefit from it and it’s FREE

    https://youtu.be/2UMpPrvLJu4

    It’s easy for some that might be really struggling with breathless

    and part two is slightly more advanced

    Pam

  • #20112
     Charlene Marshall 
    Keymaster

    Hi Pam, @pamela-martin,

    Thank you for sharing this and providing us all the link to learn more about this! I think we had talked about posting it to the forums awhile back and I may have forgotten to do this, so I am glad you have. Wonderful that you’ve been involved in this video, such great advocacy work and I know other patients will benefit.

    Thanks again for sharing! 🙂
    Charlene.

  • #20122
     Coreeta Mays 
    Participant

    I’ve never been an avid exerciser and it has become an overwhelming thought after being diagnosed with PF. Prior to being diagnosed, I began to notice my inability to complete fairly low impact activities. Initially, I brushed it off as me just being lazy. Once I was diagnosed everything made much more sense. I couldn’t believe it. I was 36 yrs old and after my open lung biopsy the diagnosis became conclusive. This was July  2018 and at that time, I was still only using 2L of supplemental oxygen overnight and as needed with activity. Just last month I had an acute exacerbation and as a result I’m currently on 3L of oxygen almost 24/7. After the exacerbation, it became very apparent that I needed to begin to take the necessary steps to become more active and change my lifestyle. I had my pulmonologist refer me to a Pulmonary Rehabilitation program. I have orientation next month. I know that in order for me to be considered for transplant at UCLA I’ll need to lose some weight. This is probably something that I should have been doing a lot sooner but the idea of working out was so daunting to me. The coughing, the shortness of breath, dizziness, etc. I’m just glad that there are people out there who can relate to this struggle but who are also successful. I know it won’t be easy but it is honestly a matter of life and death.

  • #20123
     Steve Dragoo 
    Participant

    @coreeta5150

    Hi Coreeta,

    At 70, exercise is a little tougher for me but I have noticed a slight increase i O2 for a day or so after mild to moderate exercise.  That has allowed me to exercise a little more and the renewed strength grants revived independence.  – Steve

  • #20124
     Coreeta Mays 
    Participant

    Thanks Steve, that definitely gives me some encouragement. I know I’m on the younger end of the spectrum but sometimes I sure don’t feel like it. I have lupus as well, so I struggle with extreme fatigue as well as a few other autoimmune related symptoms. I’m very determined and hopeful though. Thank you for your response.

  • #20125
     Steve Dragoo 
    Participant

    @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…

  • #20126
     Coreeta Mays 
    Participant

    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

  • #20127
     Steve Dragoo 
    Participant

    @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…

  • #20128
     Marianne 
    Participant

    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

  • #20129
     Coreeta Mays 
    Participant

    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.

    • #20131
       Wendy Dirks 
      Participant

      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.

  • #20148
     Piet Potgieter 
    Participant

    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!

  • #20149
     Susan Howitt 
    Participant

    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

    • #20158
       Steve Dragoo 
      Participant

      @piet-potgieter,

      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

    • #20161
       Steve Dragoo 
      Participant

      @piet-potgieter,

      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…

  • #20205
     Bob Humphreys 
    Participant

    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.

    • #20206
       Mark Koziol 
      Keymaster

      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.

  • #20228
     Malcolm Mann 
    Participant

    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

    • #20229
       Mark Koziol 
      Keymaster

      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

  • #20236
     Susan Howitt 
    Participant

    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

     

    • #20244
       Mark Koziol 
      Keymaster

      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.

  • #20239
     Bob Humphreys 
    Participant

    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.

  • #20245
     Mark Koziol 
    Keymaster

    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

  • #20253
     Susan Howitt 
    Participant

    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 ?

    • #20254
       Mark Koziol 
      Keymaster

      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

  • #20255
     Susan Howitt 
    Participant

    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.

    • #20257
       Mark Koziol 
      Keymaster

      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

  • #20259
     Susan Howitt 
    Participant

    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

    • #20260
       Mark Koziol 
      Keymaster

      Hello Susan, keep concentrating on your breathing, I hope you have positive experiences at the doctors appointments and your walk test. Best wishes, Mark.

  • #20261
     Bob Humphreys 
    Participant

    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.

    • #20262
       Mark Koziol 
      Keymaster

      Bob, you are totally correct. Keep pushing and keep active, and control what you can. Mark

  • #20263
     Susan Howitt 
    Participant

    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.

  • #20264
     Mark Koziol 
    Keymaster

    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

  • #20265
     Susan Howitt 
    Participant

    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

    • #20273
       Mark Koziol 
      Keymaster

      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

  • #20266
     Rob Tyler 
    Participant

    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!!!!

     

    • #20274
       Mark Koziol 
      Keymaster

      Hello Rob, thank you for your input. Keep up with your physical activity. Sounds like you are doing great. Best wishes, Mark.

  • #20269
     Malcolm Mann 
    Participant

    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

     

  • #20270
     Susan Howitt 
    Participant

    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

  • #20275
     Susan Howitt 
    Participant

    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..

    • #20276
       Mark Koziol 
      Keymaster

      Hello Susan, you are still very active even sitting but please watch your o2 sats. Mark

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