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Any one ridng with Bronchiectasis and/or NTM

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  • Any one ridng with Bronchiectasis and/or NTM

    I'm desperately trying to train and complete my dressage horse but it's getting harder by the day. Would like to hear from someone else who is facing faceing the same challenges. This is my first time posting. Hope I'm doing this right.
    ​​

  • #2
    first I want to say I am rooting for you and hope you can achieve your goals! I'm assuming since you have an ntm you are on an antibiotic and maybe prednisone long term and your symptoms are somewhat under control? I think you just need to be careful, not over do it and protect your airway from irritants, you should be successful. If on pred, protect your bones and muscles too.

    I do not compete but I have four horses of my own on partial board so I clean and bed my own stalls. I also feed and do turnout for the whole barn. Sometimes I even get a little riding in. I do get exercised induced asthma once in a while and have to take it down a notch. when that happens it's time for anther pred burst.

    A little history for you--I have mild bronchiactasis with atelactasis and some mild fibrosis along with infiltrates upper right all detected via CT scan. I do have peripheral eosinophilia. I suspect an ntm or fungal infection but so far has fallen on deaf ears as my pcp insists I have garden variety copd. I'll see my pulmo Thurs and I'll be telling him I want a sputum culture which should have been done long ago. I recently had another chest xray which revealed lung infiltrates in the right lower portion now, so my pcp started me on two antibiotics which were no help of course. my condition started out as a severe asthma attack out of the blue one morning in May of 2018. I was treated for allergies and possible infection. A chest xray in july revealed a 1cm nodule and I was dxd with copd with no mention of asthma symptoms--which have been relentless. I think being under treated for so long resulted in the bronchiactasis.
    ​​​​​
    right now I have a dulera inhaler along with my rescue inhaler--which I have to use alot due to refusing to give up my horse habit. I also have to wear a mask anytime I'm in the barn which unfortunately is also the indoor. The biggest challenge for me has been dealing with the doctors and the side effects of the meds. I do hope your initial experience was not as delayed and you are doing well. Sorry for the lengthy post--it could be way longer if I told you the whole saga, 😂

    Comment


    • #3
      Originally posted by Merry Mary View Post
      I'm desperately trying to train and complete my dressage horse but it's getting harder by the day. Would like to hear from someone else who is facing faceing the same challenges. This is my first time posting. Hope I'm doing this right.
      ​​
      More information would help, like age range, in your 20's, 40's, 70's?

      Tested for pulmonary function, allergies, eonosophils?

      Comorbidities like asthma, any other, on medications to control that and which ones?

      Your problems may be because of previous lung problems setting the lungs up to your current diagnosis.

      Is your horse boarded, where you don't have to be in the dusty environment of the barn but briefly and can premedicate and use masks so as to manage your condition best?

      With lung problems, it rarely is easy to sort thru what is going on and what may work in general, is more of an individual, patient by patient situation, so hard to say what to do to stabilize those patients so they can do what they want, best they can.

      My experience is that general practitioners handle such patients as well as pulmonologists and if a specialist is needed, allergist do better.
      Don't know why that is so, but the pulmonologists I have known have a sketchy reputation about careless patient care.
      As a patient with them, you have to become a very squeaky wheel and then they become short and annoyed.
      A friend, bad enough to end up in the hospital several times under the care of one such, finally had to fire hers, as he was not listening to her.
      My own experience is no different.

      Sounds like your problems are progressing to where you need a doctor that is proactive and addresses that, now, if your current one is not on the ball.
      Last edited by Bluey; Sep. 2, 2019, 09:52 AM.

      Comment

      • Original Poster

        #4
        I'm 58 years young. I have my horses at home. I was diagnosed last December with bronchiectasis, a staph infection, aspergillosis fungus, Mac and Abscessus infections in both my lungs. I was on an antibiotic IV drip every night for 4 months. At the same time I was on 3 oral antibiotics and a nebulizer antibiotic. I'm still on the nebulizer and the oral drugs. Unknown if they can stop the Abscessus. May still loose part of one lung.
        I am also on Albuterol and Dulera 100 and Dulera 200 when I need it. However, I don't think they are working enough for me.
        I am unable to breath when I get to riding harder then a walk.
        I am also jogging, slowly, 2 to 3 miles and biking 10+ miles to keep my lungs working better. I own all types of face masks and wear them regularly. I have canned oxygen.
        I'm totally out of breath after one minute of riding a dressage test. The rest of the test is total agony.
        I showed 1st level this year but we are training 2nd and 3rd level work. I have all my scores for 1st level bronze medal, qualified to ride a 1st level musical freestyle, qualified for the Regional Championships. The plan was to show 2nd next year. But I just don't think I can do it. This year was hard to the point it was not fun.
        I just can't get air into my lungs. The doctors, two infections disease docs, pulmonologist and an allergist, are more concerned about killing the infections then helping me breath.
        I just want to know if there are stronger inhalers out there or if my breath will come back once I'm off some of these drugs. The nebulizer has been hard on my breathing.
        I'm frustrated and starting to get depressed. I just want to know there is hope for me.
        Thanks for listening.



        ​ ​​






        Comment


        • #5
          Originally posted by Merry Mary View Post
          I'm 58 years young. I have my horses at home. I was diagnosed last December with bronchiectasis, a staph infection, aspergillosis fungus, Mac and Abscessus infections in both my lungs. I was on an antibiotic IV drip every night for 4 months. At the same time I was on 3 oral antibiotics and a nebulizer antibiotic. I'm still on the nebulizer and the oral drugs. Unknown if they can stop the Abscessus. May still loose part of one lung.
          I am also on Albuterol and Dulera 100 and Dulera 200 when I need it. However, I don't think they are working enough for me.
          I am unable to breath when I get to riding harder then a walk.
          I am also jogging, slowly, 2 to 3 miles and biking 10+ miles to keep my lungs working better. I own all types of face masks and wear them regularly. I have canned oxygen.
          I'm totally out of breath after one minute of riding a dressage test. The rest of the test is total agony.
          I showed 1st level this year but we are training 2nd and 3rd level work. I have all my scores for 1st level bronze medal, qualified to ride a 1st level musical freestyle, qualified for the Regional Championships. The plan was to show 2nd next year. But I just don't think I can do it. This year was hard to the point it was not fun.
          I just can't get air into my lungs. The doctors, two infections disease docs, pulmonologist and an allergist, are more concerned about killing the infections then helping me breath.
          I just want to know if there are stronger inhalers out there or if my breath will come back once I'm off some of these drugs. The nebulizer has been hard on my breathing.
          I'm frustrated and starting to get depressed. I just want to know there is hope for me.
          Thanks for listening.



          ​ ​​





          Wow, you sound like you are under good care and have a serious infection going.
          That is what my friend had, she was almost 50 when she was sick.
          It took several months and hospital trips before they finally hit her with the right medication and/or her immune system kicked the infection off.
          That was decades ago, I am sure they are way better today at fighting those.

          My friend made a whole recovery and was back to driving her tractor and we competed in rabbit races.
          Our tractors had a turtle and a rabbit on the accelerator stick.
          We helped each other plow and had silly fun to pass the time.
          Her problem was that she was a heavy smoker all her life and that damage smoking does to lungs set her up for the infection and abscesses.

          Sounds like you are fighting this well, give it time.
          That you can keep up several miles jogging and other exercise is great.
          May want to let your drs know you are getting seriously depressed, they may be able to help that also.
          It won't hurt if your competition goals have to wait this out, there will be time later to catch up.

          I hope they can get your lungs cleared soon.
          It took months to get my friend well, but she was fine afterwards.

          Comment


          • #6
            Isolated MAC, or MAC + MAA ?

            Comment

            • Original Poster

              #7
              I don't know. I can find out tomorrow. I see one of the infections disease doctors. It's the Abscessus they are most concerned with. It's one of the new NTM they have identified. It extremely resident and fast growing.
              The thing I'm most concerned with is my bronchial tubes close off when I'm cored up and riding a forward trot or canter. This isn't the case when I run or bike. I'm relaxed and jogging or peddling at a cadenced pace.
              I'm much more active ridng dressage. Believe it or not.
              I plan to ask about stronger inhalers tomorrow. Wish me luck.
              It's true, you have to fight these doctors for everything.
              The one thing a doctor turned me on to that helps is a flutter valve. You can get them on Amazon or medical supply places. It helps to clear the lungs of mucus. Yoga also helps clear my lungs.
              lungs.
              Thanks for all the support. Hope everyone can find the treatment they need. Exercise helps me a lot. The only problem is when I riding my dressage horse. It could be all the drugs I'm on. They are rough. Every time I see one of the infectous disease docs I always congratulate them on not klling me yet.

              ​​​​​
              ​​​​​​

              Comment


              • #8
                I know it's late but since you see the doc tomorrow wanted to mention a few things. First, Bluey s. replies are very encouraging so keep those handy in your mental toolkit. I was going to ask if you had tried the flutter device or a vest. I have no experience with those yet but some members on a bronchactasis support forum and copd360 forum find them helpful.

                Dulera: the pumonologist changed my dose to the 200 MG 2 puffs 2x day rather than the 100 my pcp prescribed and that did make a difference. you might ask your doc if changing to 200 as the primary and the 100 as needed. I can't recall the names of the oral meds but there are stronger ones used for cystic fibrosis patients. ( mucus thinners) and now I'm recalling a new oral med for asthma or copd that is not a steroid, and sounds promising. can't remember that one either right now but yes, there are more options available that may help you breathe better. No doubt all the antibiotics and all the prep it takes just to be able to breathe are playing a role in sapping your strength. it is such a double edged sword and of course your heart has to work overtime to keep every thing going as well

                Good luck during your upcoming Appointment. Here's hoping your doc is able to tweak your treatment plan so you can start feeling better soon.

                Comment


                • #9
                  Originally posted by bigolebay View Post
                  I know it's late but since you see the doc tomorrow wanted to mention a few things. First, Bluey s. replies are very encouraging so keep those handy in your mental toolkit. I was going to ask if you had tried the flutter device or a vest. I have no experience with those yet but some members on a bronchactasis support forum and copd360 forum find them helpful.

                  Dulera: the pumonologist changed my dose to the 200 MG 2 puffs 2x day rather than the 100 my pcp prescribed and that did make a difference. you might ask your doc if changing to 200 as the primary and the 100 as needed. I can't recall the names of the oral meds but there are stronger ones used for cystic fibrosis patients. ( mucus thinners) and now I'm recalling a new oral med for asthma or copd that is not a steroid, and sounds promising. can't remember that one either right now but yes, there are more options available that may help you breathe better. No doubt all the antibiotics and all the prep it takes just to be able to breathe are playing a role in sapping your strength. it is such a double edged sword and of course your heart has to work overtime to keep every thing going as well

                  Good luck during your upcoming Appointment. Here's hoping your doc is able to tweak your treatment plan so you can start feeling better soon.
                  Right, there are several new medications coming soon and some may just help lung infections.

                  Dulera is an excellent medication that combines two products that work together way better than alone.
                  Best I remember, those are an anticholinergetic and a LABA.

                  There is a newer one, Trelegy, that has also an ICS, a corticosteroid.
                  With an infection in there, that may not be best, but for clearing overreactive lungs, that addition is important.

                  A possible problem with those medications, while they really help lung function, the side effects can make you feel worse.
                  Depressions is one of those, why the OP needs to let her Dr know and be proactive about it, not let it possibly become it's own problem.

                  Heart function is also important to consider, as those lung function medications can affect heart rhythm, causing tachycardia, beating too fast and so not pumping properly.
                  When using those medications, each one of us may react to those differently.
                  We end up being our own lab mouse, an uneasy feeling that, part of those health problems.

                  If the OP's problems are mainly the lung infections, no previous chronic ones setting her up for that, once the infection is cleared, she should be ok and be able to go back to riding just fine.

                  Hoping the next Drs appointment will help answer her questions.

                  Comment


                  • #10
                    what Bluey said. And in terms of riding as opposed to jogging or biking, you may consider the role anxiety may play for that particular activity--knowing you will be short of breath when you ride or trying to complete a test. yes there is a physical demand on your body but the anxiety over that activity in itself may be contributing to a cascade of events making your physical challenges worse.

                    Comment


                    • #11
                      Hey guys, this is the drug I was thinking of,

                      "Roflumilast (Daliresp) is a type of drug called a phosphodiesterase-4 inhibitor. It comes as a pill you take once per day."

                      Comment


                      • #12
                        Your condition requires complex and lengthy treatment. There will be no "one stop shopping for cure", you are looking at many months of treatment and convalescence. Your posts indicate that you are aware of this, therefore I believe your question is not "What medical treatment is recommended?" I believe your questions to be "What might I do today to improve my functionality and allow me to tolerate riding more readily? Improved airway clearance is possible immediately.

                        Bronchial toileting is improved with inversion and percussion. Not everyone is tolerant of inversion, you alone can decide if you are able. Lean over the arm of your sofa, or better, use a board to craft a tilt support (fluid runs downhill). Have an assistant percuss your chest either manually, or with a mechanical percussion device. Mechanical devices are in my opinion more effective, but you will want to try manual before investing.

                        If you choose to invest, look for a quad head percussion massager with dual handles. Assistant is to apply pressure, and percuss chest/back for several minutes to facilitate expectoration. Frequency, intensity and duration of percussion is adjusted according to individual response. Visualize those sticky secretions being vibrated and loosened so you can expel them more effectively. Very old school, but highly effective. Results are immediate.

                        Comment


                        • #13
                          Originally posted by paintedpony View Post
                          Your condition requires complex and lengthy treatment. There will be no "one stop shopping for cure", you are looking at many months of treatment and convalescence. Your posts indicate that you are aware of this, therefore I believe your question is not "What medical treatment is recommended?" I believe your questions to be "What might I do today to improve my functionality and allow me to tolerate riding more readily? Improved airway clearance is possible immediately.

                          Bronchial toileting is improved with inversion and percussion. Not everyone is tolerant of inversion, you alone can decide if you are able. Lean over the arm of your sofa, or better, use a board to craft a tilt support (fluid runs downhill). Have an assistant percuss your chest either manually, or with a mechanical percussion device. Mechanical devices are in my opinion more effective, but you will want to try manual before investing.

                          If you choose to invest, look for a quad head percussion massager with dual handles. Assistant is to apply pressure, and percuss chest/back for several minutes to facilitate expectoration. Frequency, intensity and duration of percussion is adjusted according to individual response. Visualize those sticky secretions being vibrated and loosened so you can expel them more effectively. Very old school, but highly effective. Results are immediate.
                          That is very interesting and worth asking the Dr about.

                          As if that kind of therapy is what someone with an active infection and maybe lung abscesses needs to be doing?
                          I would be sure the Drs are on board with that now, at this stage of the infection, or if it is better to wait until infection is cleared first.

                          Comment


                          • #14
                            As Bluey indicates, always consult your healthcare provider !

                            If you have great insurance, there is also the option of a wearable (vest) airway clearance device that provides on the go oscillation.

                            Comment

                            • Original Poster

                              #15
                              Well I had a long talk with my pulmonologist on Friday. He says I'm on the best inhalers for Asthma now. He said my lung function tests show my lungs are good despite having all the infections in there. He agrees with me that my problems may be with the Arikayce nebulizer drug. I will have to talk to the infections disease doctor on the 18th. But I doubt they will let me off the Arikayce anytime soon.
                              I have ridden hard this summer and made progress. It just wasn't as easy as it should have been. Show season is over for me so I'm going to slow down a bit. Maybe some trail riding will help.
                              Thanks for all the suggestions. I really appreciate it.


                              ​​​​​​

                              Comment


                              • #16
                                Originally posted by Merry Mary View Post
                                Well I had a long talk with my pulmonologist on Friday. He says I'm on the best inhalers for Asthma now. He said my lung function tests show my lungs are good despite having all the infections in there. He agrees with me that my problems may be with the Arikayce nebulizer drug. I will have to talk to the infections disease doctor on the 18th. But I doubt they will let me off the Arikayce anytime soon.
                                I have ridden hard this summer and made progress. It just wasn't as easy as it should have been. Show season is over for me so I'm going to slow down a bit. Maybe some trail riding will help.
                                Thanks for all the suggestions. I really appreciate it.


                                ​​​​​​
                                The trouble with helping you breathe past the asthma is that what helps also makes your immune system less effective, something you don't want while fighting an infection, why the Dulera, that doesn't has any corticosteroids, the worst medication as far as suppressing your immune system you need working hard to get rid of the infections.

                                Sounds like being the squeaky wheel is what you need to be to keep your Drs on their toes and not forget that you really need to be able to breathe better and feel better best you can, along with knowing you may feel somewhat poorly from what you need to fight those infections.

                                A though spot to be, but once infections clear, you will have an easy go of it and can go back to riding fully.

                                Comment


                                • #17
                                  Originally posted by Merry Mary View Post
                                  Well I had a long talk with my pulmonologist on Friday. He says I'm on the best inhalers for Asthma now. He said my lung function tests show my lungs are good despite having all the infections in there. He agrees with me that my problems may be with the Arikayce nebulizer drug. I will have to talk to the infections disease doctor on the 18th. But I doubt they will let me off the Arikayce anytime soon.
                                  I have ridden hard this summer and made progress. It just wasn't as easy as it should have been. Show season is over for me so I'm going to slow down a bit. Maybe some trail riding will help.
                                  Thanks for all the suggestions. I really appreciate it.


                                  ​​​​​​
                                  Glad to help and that you reached out with your question y. I do wish I'd had a quick fix to share. It does help knowing others here have some experience and insight with this condition and its myriad complications. My slight narcissism had me convinced I could be the only one with such challenges😌

                                  You are really on top of your condition and have a good treatment plan-it will just take a tincture of time to resolve. Yes ,now that the show season is done for you the immediate pressure to perform well is no longer part of the equation. I believe you will wake up one morning and feel your body has turned the corner and won the fight. And yes, have some nice wonderful trail rides and some buddy time with your horses-- so good for the mind, body, and soul!

                                  Comment

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