This topic contains 34 replies, has 9 voices, and was last updated by  Steve Dragoo 2 months, 1 week ago.

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  • #19882
     Charlene Marshall 
    Keymaster

    The benefits of pulmonary rehabilitation are widely discussed among patients living with pulmonary fibrosis (PF). Exercise programs and rehabilitation goals are uniquely designed and set up between a patient and their medical team in order to maximize the benefits of pulmonary rehabilitation programs.

    Our latest flash briefing talks about pulmonary rehabilitation and how these programs can improve a patient’s ability to exercise, along with their quality of life when suffering from PF. Listen to the full briefing HERE.

    Have you participated in a pulmonary rehabilitation program since your IPF/PF diagnosis?

    If so, did you find it beneficial? Why or why not?

  • #19911
     Carol N Lenahan 
    Participant

    Pulmonary rehab is THE BEST.  I’ve been in rehab for well over 4 years and it makes a whole lot of difference.  Currently I’m at Duke University having been listed for a lung transplant.  Before Duke I participated in several different rehab programs and both of them gave me the foundation to be prepared for a transplant.  Duke’s program requires one to participate in 2 hours per day / 5 days a week of walking, biking, weights and floor exercise.  Each at their own pace!  One must achieve a level of fitness before they will list you.  After transplant it’s back to rehab to gain back what you have lost during your transplant downtime.  AND once you go home they expect you to continue to in rehab program / or exercise to keep you and those new lungs healthy and happy.  GO REHAB!!!

    • #19924
       Charlene Marshall 
      Keymaster

      So wonderful to hear how beneficial pulmonary rehab has been for you Carol ( @mom49 ), thanks for sharing! I too have benefitted from pulmonary rehab programs, and am thrilled to hear that it has been a good foundation for your lung transplant evaluation, as this is also what I will be facing. Sending you nothing but the best as you await your transplant at Duke. They are a great facility, best wishes to you!

      Regards,
      Charlene.

  • #19922
     Steve Dragoo 
    Participant

    PT Rehab increases my O2 for a couple of days which is a nice side benefit to this lovely disease…

    • #19925
       Charlene Marshall 
      Keymaster

      Hi my friend @steve-dragoo – thanks for sharing! Hope all is well in the Philippines! 🙂 How are the Wei products going, and are you doing pulmonary rehab at all now that you’re home? Take good care, I think of you often and hope you’re enjoying yourself.

      Charlene.

  • #19944
     Floyd C Montgomery 
    Participant

    I am an 83 year old man that was diagnoised with IPF about 2 years ago. I just completed my seco jnd round of 24 therapy sessions,(twice a week).
    I currently am on O2 24/7, and my walking need is 6 liters per minute.
    The first day in therapy, at the end of my 6 minute walk with oxygen, my level dropped to 86. At the end of the sessions, with my 6 minute walk, it never dropped below 91. Not big numbers, but certainly a pleasent surprise to me and my pulmologist. I really feel better physically, so now I just need to discipline myself to keep up the routine. I feel it has improved the quality of my life, for how long, no one knows.

    • #19948
       Steve Dragoo 
      Participant

      @charlene-marshall

      Hi Charlene – we are still in Kuala Lumpur and it has been a very good trip. Very clean melting pot cosmopolitan unique city. Leaving 8 AM Thursday for our long journey home.

      Wei has worked remarkably well – no O2 since arriving here a month ago. No difficulty flying.  Was out of breath a little after climbing 3 flights of stairs but mostly because it was hot in KL – close to the equator.  It is helping stabilize and even improve a fair amount but my lungs are no where close to what they were 4 years ago.

      Today we took a journey to the mountains over 6000 feet and had no trouble walking around a buddhist temple although all the burning incense bothered me a little bit.  Hawaii is just around the corner for you so enjoy…

      Steve

      • #19963
         Charlene Marshall 
        Keymaster

        Hello my friend @steve-dragoo,

        Enjoy your time in Kuala Lumpur, so glad to hear it has been a great trip! You’re probably en route home now as I write this, I hope the long journey home goes well. What was your favourite part of the trip there?

        Really glad to hear you’re still finding Wei products beneficial. Have you already been back home for a month? Wow, time flies! So glad you’re both having this time together and enjoying some new memories 🙂

        Yes, Hawaii will be here soon, I am so excited! Not wanting to wish our summer months away but certainly ready for September 25th when I fly out. Yahoo!

        Charlene.

    • #19962
       Charlene Marshall 
      Keymaster

      Hi Floyd,

      Thanks so much for contributing to this topic thread and sharing your thoughts on the pulmonary rehab program you did. So glad it has helped you, and yes, remembering to discipline ourselves and continue with the routine is important but hard isn’t it? 🙂 The numbers may be a small increase, but an increase nonetheless and I am glad you’re feeling a bit better too. Thanks again for writing!

      Charlene.

      • #19991
         Steve Dragoo 
        Participant

        @charlene-marshall

        Hi Charlene,

        Home safe after a couple of weather delays.  Had a little problem with the airline in Malaysia but pushed it through.

        My (our) favorite part? – Yes going there and experiencing all we could.  Second favorite was having an 8′ shark swim over my head baring its’ teeth, Next favorite was glass bottom cable car ride in the mountains – nice cool air for me it was only 29 there. We took hundreds of pics so I need to wade through them and will post some on FB soon.

        Chat soon… – Steve

        PS – did I give you my address here for shipping a couple megagrams of Kona???

      • #20040
         Charlene Marshall 
        Keymaster

        Hi Steve,

        Nice to hear from you and glad you’re home safe and sound. The problem you referenced about the airline in Malaysia, was it weather-related or IPF-related? I’m glad you could push through and get home safely, regardless.

        Your trip sounds amazing – except the shark part, I don’t think I could do that – although it sure would be an amazing experience! Did you do one of the tank dives? Love the glass bottom cable car ride in the mountains, I did that from the peak of Blackcomb to the peak of Whistler Mountain in British Columbia last year and loved it. Glad the air was cool for you and didn’t cause any issues, that is a bonus!

        I am thinking of doing a dolphin swim in Hawaii – although it is quite expensive – it is something I’ve always wanted to do and would cross off an item on my bucketlist. Thoughts?

        Chat soon,
        Charlene.

  • #19953
     Jay Turbes-s 
    Participant

    Being totally new to the IPF adventure four years ago, we knew nothing about pulmonary rehab. back then. It was three years later and thanks to the Pulmonary Fibrosis Foundation’s website, the European IPF Rareconnect world forum and others when we finally realized that part and parcel of IPF care was rehab.

    We asked Kaiser/CO about this thing called pulmonary rehab and they said, “Well, yeah, if you want to go elsewhere for it and pay for it outside of your Medicare Advantage. We don’t offer it, but we’ll be happy to send you a list of places in Denver…”. One, of course, was National Jewish Hospital — duh.

    Kaiser/CO to the rescue, as always.

    • #20043
       Steve Dragoo 
      Participant

      @charlene-marshall

      Hi Charlene – the flight issue was about an onward ticket from the Philippines. The Philippines can require it but not an airline (especially in another country as they are not immigration or customs. We get a special stamp on my passport when we travel together and return to the Philippines which allows me to stay one year free – then we just repeat for another year. So no IPF issues at all.

      Nothing really slowed us down except my age an my knees.  It was super hot in the city and I did stop for about 20 seconds after climbing 3 flights of stairs outside – but the heat really puts me down. Yes the glass bottom was fun. Several years ago we took the longest zip line in Asia (not far from here) and had a blast riding the mountain trail to get to it.

      Definitely go for the dolphin – won’t be any sharks around them for sure. I would like to climb a volcano in Hawaii. We were on a beautiful island a couple years ago close to home and they have 3 minorly active volcanoes but we could not climb them as the trail is steep and it was raining hard up high…

      BTW – Wei works very well for me.

      Chat soon – Steve

      It was a glass tunnel under the large aquarium but lots of interesting sea species and fun…

  • #19964
     Charlene Marshall 
    Keymaster

    Hi Jay,

    Thanks for writing, although so sorry it took so long for you and your lovely lady to find out more about pulmonary rehab programs. I suspect a member of your healthcare team should have updated you about this long before then. Bummer! Unbelievable that was your response to your inquiry about the program – so sorry you had that experience. Has it been beneficial do you think?

    Charlene.

    • #20029
       Steve Dragoo 
      Participant

      @jay-turbes-s

      Jay – if you have some time, read the forums about laser, Wei laboratories, and homeopathy. There are several posts that may help you.  I have had IPF since Oct. 2016 and discovered the forums here last July. They have been a tremendous help in every way – mental, physical, spiritual, homeopathic, and other successful alternative therapies/protocols/supplements, so much so my O2 stays around 96-98 except under moderate to heavy exertion but then it only dips for a short time to 90-92.

      I feel better today then I did a year ago by a significant amount. That is subjective because of the timing of my tests because they were before starting 3 or 4 successful changes that have really help. – Steve

  • #19985
     Jane McBride 
    Participant

    Would appreciate recommendations for Pulmonary Rehab in Northern Illinois.

     

    • #20022
       Jay Turbes-s 
      Participant

      Charlene,

      When we learned about rehab. and that it was recommended IPF treatment, it was already the third year after diagnosis and she felt that it was futile to get involved. I’m sure that had it been offered right from the get-go she would have done it (or anything!) to fight IPF. Three years later, she had resigned herself to the inevitable. We were focused on making an issue of getting Esbriet or Ofev and that alone took almost a year before Kaiser reluctantly agreed to the Esbriet treatment.

      • #20039
         Charlene Marshall 
        Keymaster

        Hi Jay,

        Ah, I am so sorry this has been your experience with Kaiser – sounds unpleasant to say the least! I understand the concept of starting pulmonary rehab when you already feels so exhausted and worn down from this disease, so I wouldn’t blame anyone from declining it. I am glad she has the anti-fibrotics now, although it never should have been such a struggle to get them. I am hopeful they are working for her, and that your struggles with Kaiser are no longer an issue.

        Charlene.

  • #19987
     Betty Edwards 
    Participant

    I’m in the middle of my pulmonary rehab. Twice a week for 13 weeks. I find it helpful. I’m not on oxygen at home but my levels drop to the low 80s quite rapidly if I walk faster than 2 mph or go up hill. They put me on 2L of ox while I’m on the treadmill and I can walk 3mph without dropping below 89.

    Basically PR is improving my physical fitness and allows me to test my limits and fin out what oxygen can do for me. I’m hoping to build up more exercise tolerance without oxygen. Not sure if that’s possible.

    Also going to an ipf support group once a month and find that very helpful. This is such a confusing disease.

    If my oxygen levels drop to low 80s for a couple of hours each day, is that really a problem that can cause hypertension? There does not appear to be a clear answer.

    Betty

  • #20080
     Charlene Marshall 
    Keymaster

    Hi Steve,

    Ah, thanks for sharing! While I am glad you didn’t have any IPF-related issues when it came to flying, I wish the airline didn’t cause you any grief either. Glad everything was sorted out okay. Sorry for keeping this short, just about to head to bed, I am awfully tired as I am battling a bit of a bacterial infection in my lungs at the moment. Boo!

    Sounds like quite the adventure, and certainly amazing that you were able to do a lot despite IPF and the heat. Way to go! I’ll keep you posted on the dolphin visit but I think I am going to do it, despite the cost. The sentiment “you only live once” means a lot more to me now being diagnosed with IPF. I’ll send a photo if I do for sure. So glad you had a great trip, keep on doing amazing things my friend, very inspiring!

    Cheers,
    Charlene.

    • #20174
       Lynn Schmitt 
      Participant

      @betty-edwards
      I don’t know the answer to your question, but I would really like to know also. Charlene, can you or some doctor answer Betty’s question about O2 saturation dropping into low 80’s for a couple of hours each day? Please someone respond!
      Thanks,
      Lynn Schmitt

      • This reply was modified 2 months, 1 week ago by  Charlene Marshall. Reason: tagging
      • #20188
         Charlene Marshall 
        Keymaster

        Hi @lynn-schmitt and @betty-edwards,

         

        Sure, I’ll do my best to provide some insight/thoughts on the saturations dropping into the 80s. Thanks for tagging me in this Lynn. Betty – I worry that your saturations drop that low, and for an extended period of time. I was told that 02 sats under 89 cause damage to other organs due to them not getting enough oxygen. This is why I think they use the 89 saturation number to determine if a patient needs supplemental oxygen, because they don’t want the numbers to drop lower than that. Have you tracked when this happens, and for how long and shown your doctor? I’d be really concerned if he/she says this is fine. I also can’t imagine how that feels, I know I am quite lightheaded when my saturations drop. If you haven’t brought it up to your doctor, I’d really encourage you to do this. Let us know how you make out my friend, thinking of you and try everything you can keep to keep that oxygen level up!

        Regards,
        Charlene.

         

         

         

         

    • #20180
       Steve Dragoo 
      Participant

      @betty-edwards

      Hi Betty,

      Yes this  is a mysterious disease when it comes to understanding symptoms and side effects.  My O2 started dipping a few months ago and PAH was discovered. So check your heart rate when that happens and maybe journal your activity to help track events.

      Have you done any tests like FEV or 6-minute walk?  Certainly reach out to your pulmonologist and ask for your heart to be checked out.

      stay well,

      Steve

  • #20082
     Steve Dragoo 
    Participant

    @charlene-marshall,

    …”I’ll send a photo”… Why didn’t I think of that?  Send you some in a couple days.  Yes, you can guess it, I get over here and my laptop dies again and finally they will take it in to fix but of course that is more complicated over here. First I have to transfer ownership to me???? Then contact local Dell for pick up and repair after I transfer the warranty over here….  Can’t wait til we go back to the dark ages and can throw rocks at the computer screen.

    Have a great rest and consider adding crushed garlic to your morning regimen.  Whenever I start to get sick, I crush garlic, drink warm lemon juice and then eat the garlic 20 minutes later.  Crushing it helps bring out the allicin – the good stuff…

    Wellness – Steve

     

    • #20091
       Charlene Marshall 
      Keymaster

       

      So nice to hear from you, as always @steve-dragoo! I’m looking forward to seeing some of the photos you took, but no rush. The weather is finally beautiful here and I am hoping it is just as nice there. My co-moderator Mark is overseas right now and is sending me photos from Greece, I am so jealous of you both being near the ocean. I can’t wait to be oceanside in Hawaii!!! I think I have decided to swim with the dolphins – expensive, but a once-in-a-life time opportunity! 🙂

       

      I can’t believe the hassle you’re running into with your laptop! When you purchase a laptop, don’t you have ownership of it? Seems a bit silly!

      I’ll definitely try the crushed garlic tomorrow to my morning lime water regimen, because my throat is quite sore, as are my ears. I know I am battling a bit of a bacterial infection as well which sucks. I hate antibiotics!

      Talk to you soon and as always, thanks for writing!
      Charlene.

  • #20083
     Carol N Lenahan 
    Participant

    First of all I’m so sorry that people are given the run around by the insurance companies about funding pulmonary rehab.  Just not right!

    BUT please take advantage of local gyms (YMCA), workout facilities etc. while waiting for the insurance company.  Most places have an instructor who will give you guidance, show you how to use the various machines and give you the “YOU GO” support.  EVERY STEP COUNTS!  Buy some “gym clothes” (Walmart is fine) and only wear them when working out. The clothes will remind you that you have business to do. Become a regular, (make sure friends and family know you are busy during that time period) show up, keep a diary, record your daily workout and soon you will see your progress.

    Good luck to all, and maybe you’ll meet some new friends at the gym.

     

    • #20093
       Steve Dragoo 
      Participant

      @charlene-marshall,

      Regards the laptop my favorite Hero says these words I try to live by, “In this world you will have tribulation but fear not for I have overcome the world.”

      So then when you go to Hawaii it will be payback time to Mark and me for daring to send you fun pics? LOL

      Regards the lime water and garlic wait 20 minutes before consuming the garlic and crush it wait 15 minutes then consume. That seems to be the optimal approach and hopefully you do that for 3 – 5 days straight.  I know in the past it has lessened symptoms and diminished a cold a couple days faster.  Really hope it helps you.

      Well I did finally catch a cold here from Malaysia return trip maybe. Certainly hope it is not IPF raising its’ ugly head but I can tell a difference since I stopped the laser 5 weeks ago. If one can afford it, I think that laser and Wei would win the day.  I am still using the serrapeptase and nattokinase effectively.  Now if I could just find a Dunkin Donuts over here….  WAIT!!! I think I see one not too far away.  Gotta go… Steve

  • #20084
     Jim 
    Participant

    Male, age 67, IPF diagnosis 1/17. I exercise because I always have. Currently 2 hours of supervised pulmonary rehab once weekly, including treadmill, stationary bike, and Stairmaster plus dumbbells & body weight, all while on an O2 cylinder. In addition, daily exercise bike and free weight sessions at home using an O2 concentrator.

    For me, the greatest benefit is psychological – it lifts my mood to do SOMETHING. Regular exercise also maintains muscular strength and tone.

    • #20088
       Steve Dragoo 
      Participant

      @mom49

      Hi Carol – great ideas to help put us in the right frame of mind. – It is for our future we exercise so that 2 or 3 years from now we can still care for ourselves mostly, not to mention the increased O2 benefit mild exercise can do. – Steve

  • #20155
     Charlene Marshall 
    Keymaster

    LOL yes @steve-dragoo… I’ll be sending you and Mark photos of my trip to Hawaii for sure, as pay back 😉 Very jealous of both of your amazing views. I think Greece is on my bucket list destinations for next year now, it looks gorgeous where he was!

    Did your cold surmount to anything? I hope not! Thanks for sharing the mix of garlic and lime juice for me, I’ve really gotten used to the morning routine of lime juice which I like 🙂

    Hope you had a nice weekend – weather was finally beautiful here in Canada for Canada Day weekend!
    Talk to you soon,
    Charlene.

  • #20160
     Steve Dragoo 
    Participant

    @charlene-marshall,

    My address is for the kona: 4th St Door 3, Guingona Subd., Butuan City, Agusan del Norte (province), Philippines 8600… lol

    Kuala Lumpur was beautiful and spotless.  I would go again. So I hope it is a cold  headed to the pulmonologist in an hour… – Steve

  • #20162
     Charlene Marshall 
    Keymaster

    Keep me posted on how it goes Steve. I’ll be thinking of you!
    I am heading to bed shortly, but hope the appointment with the pulmonologist goes really well.

    Charlene.

  • #20163
     Steve Dragoo 
    Participant

    @charlene-marshall,

    Hi,

    Medicine (or more accurately, the lack there of) over here is substantially different in this very poor developing nation.  Even finding concentrators in the provinces is challenging as everyone here says, “All things come from Manila”, and that’s pretty much true.  If I lived up there no problem.  Doctor had not heard of ofev or esbriet before today. IPF is rare here and the doctor said when they go to lung conferences all the western doctors head to the IPF seminars but Asian doctors do not.

    So the option is the India version of those two meds and I can get portable O2 bottles/big bottle and take them to refill – that is more common.

    So I hope this cough is a cold and I find the right O2 soon. Little to no hope of finding a class 4 laser here.

    Sleep well,

    Steve

  • #20185
     Charlene Marshall 
    Keymaster

    Hi @steve-dragoo,

     

    How are you feeling now, any improvement on what-we-hope is just a cold/virus? Yes, I suppose the ability to treat something there with medications is substantially different than the access you had in the US. How far from Manila are you? Interesting about the western vs. Asian doctor seminar preferences. Where do the Asian doctors go, would you say at these conferences – more naturalistic approaches?

    I’ve heard that there is virtually no difference between the Ofev in the US and what can be ordered from India at a fraction of the cost. Of course I can’t be certain of this, but I know of a few folks who’ve done this. Might it be an option for you if the doctor there thinks it would benefit you? So much learning to do, wow!

    Take care,
    Charlene.

  • #20196
     Steve Dragoo 
    Participant

    @charlene-marshall

    Hi Friend,

    Well, the environment is pretty harsh here. For example public transportation in the provinces consists of motorcycles with covered bench seats for 6 (Filipinos) and a multi-cab (pick-up truck bed with covered benches). Both pretty small for me and all of them including long range buses/trucks spew fumes, add in the heat and humidity and it is a challenge. – We do not have a car but our oldest son helps us with his once in a while. Manila is about 750K by air 1.25 hours, by car and boat about 2 days.

    So the cough has returned but seems to be stable. I may consider increasing serrapeptase again but I am taking 410,000 SU’s daily also may slightly increase nattokinase.

    You and PF News know more about IPF than Filipino doctors as it is pretty rare here and I introduced the local doc to Ofev and Esbriet. Because I cannot find a laser here and the looming large question of Wei Laboratories efficacy, I may seek a low dose of one or both of the western meds.  Do you know what would be a low dose?

    There does not seem to be a lot of homeopathic education or solutions here but some know what herb or tree or veggie or fruit helps what. Dengue is fairly common but there are local remedies many know about yet not doctors as they are generally western trained and probably know more about COPD or emphysema. I only went to the doctor to see what she could tell me about concentrators but here O2 bottles are used and I would take them for refill. I forgot to ask here about lasers but I will be sending her my latest FEV results and try to remember to ask her then.

    Hope you are fully recovered – 2.5 months is fast so look to the future.  The hotel card is useful for car rentals but I have not looked at it for a while.  I think you just go to the web link and car rental is an option at the top.

    Thanks for asking. – Yes life is different here and one of the first things a westerner has to do is forget about being a westerner or they will just stay confused. I have been in and out of the Philippines about 12 times so I adjust ok after a while.

    Take care,

    Steve

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