This topic contains 25 replies, has 6 voices, and was last updated by  Susan Howitt 2 days, 23 hours 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

     

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