Exercise for BE/NTM patients
I am not a fun for exercise in my whole life. If I exercise in a high intensity way for two weeks, I will get a cold for sure.
I quit jogging after I got MAC, as I am not sure jogging is the best way to exercise with lung disease like BE/ active infection as it may cause bleeding.
However after I did 50 push ups on Monday , I found I have a little bit sputum with brown color, not sure whether it is a bleeding caused by push ups. Does anyone share the same experience ever? Does it mean I still have ongoing infection/ inflammation in my lungs? I thought I can exercise in a more intensive way when my cavity is closed, but it seems I should not be such optimistic.
Walking is great but it is not strength exercise. Swimming is impossible for BE patients too. It is important to control the amount/intensity, which is my lesson.
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Exercise is a critical piece of my airway clearance. Vigorous walking, strenuous house or yard work, yoga or dancing provide great airway clearance as well as being fun or productive. Some members also run, jog, bike, or play tennis and other sports.
How much exercise depends entirely on the individual. It sounds like you are prone to hemoptysis (coughing up blood) so you need to be cautious. Maybe a course of pulmonary rehab could be helpful for you.
All that said, I think perhaps the brown sputum you saw after exercise was from deep in your lungs, and the activity helped your airway clearance. If the sputum is bright red it indicates a current bleed.
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1 Reaction@sueinmn You are very knowledgeable and logical thinking. I do find I have darker sputum EACH time I did highly intensive exercise like a lot of push ups. My pulmonologist suggested me to hold airway clearance to see whether it can resolve the bleeding. In addition, I used two vials of saline for airway clearance each time, totally four vials a day. I am not sure whether it irritates my lungs too. Probably I should hold for both - exercise and airway clearance.
@helen1000 I would suggest that larger quantities of 7% saline is more of an irritant to lungs than some exercise.
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1 Reaction@sueinmn Thanks Sue, I feel it is more effective to use two vials of saline to help me clear the mucus though I dont have a lot of mucus. But I trust you, and will reduce the quantity to one vial. In addition, it looks like many BE patient has a genetic variant in CF test. I have one single variant which is found in 13% of CF Asian patients. I guess this genetic variant, though will not cause CF, but may be related to BE. That is to say, BE is a genetic disease and may cause frequent lung infection. Am I correct?
@helen1000 As far as I know, a few people may have genetic markers that predispose them to Bronchiectasis, but largely it is not considered a genetic disease at this point. Of course, someday, with further research and more gene sequencing, that could change.
My BE is thought to be the result of years of undertreated asthma, repeated lung infections, and possibly early e posture to a number of irritants. Someone else in my family as rheumatoid arthritis that is thought to be the cause of their BE. In some people it is considered idiopathic, meaning cause unknown.
As for the one vial of saline versus two, what does the doctor say? I would be surprised if they didn't consider that as a possible cause of your hemoptysis, do they know how much you are using?
Also, if you don't bring up much mucus, exercise might help without irritating your lungs. I do yoga or brisk walking to get my lungs working, and what little mucus I have just comes up. Since I have no NTM and am prone to hoarseness and vocal chord dysfunction, I only use saline occasionally (but use my inhaler daily) before clearance. My pulmonologists agree with this protocol, unless I have a cold or other respiratory issues.
@sueinmn Thanks a lot for your detailed explanation. I agree that a single CFTR genetic mutation may not cause CF, but it may be the contributing factor of Bronchiectasis or other atypical symptoms. In addition, many BE patients including me have family history of lung disease such as COPD, BE, TB, or lung cancer. I believe we all carry some genes that make us susceptible to lung disease. As I know that some genetic mutation affects protein synthesis.
Like you, I also have wheat intolerance, while I was not aware of it and took it all the time, which may cause a lot of inflammation in my body and this inflammation goes to lungs via blood circulation and cause BE. In Chinese herbal medicine, if your digestive system is not healthy, your lung will not be healthy. I agree with this as most of us are slim, hard to gain weight.
I don't cough at all so I use saline to help me. My doctor advised me that one vial is enough but I did not follow their advices. Walking is great but it is relatively mild and it is not strength exercise. I will follow your advice to adjust saline and exercise amount.
The Mayo Clinic is actively involved in research and clinical trials for stem cell therapy in the treatment of bronchiectasis. They are studying mesenchymal stem cells (MSCs) as reparative tools for patients with chronic lung conditions, including bronchiectasis. Their studies have shown that MSCs can be safely and effectively administered intravenously to patients with chronic lung allograft dysfunction and other respiratory-related conditions. The clinic's research is supported by the Mayo Clinic Center for Regenerative Biotherapeutics, which aims to develop new therapies based on a cell-centered approach.
Mayo Clinic
For more detailed information on the clinical trials and research conducted by the Mayo Clinic on bronchiectasis and stem cell therapy, you can visit their official website or contact their research team directly.
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1 Reactionhttps://www.mayoclinic.org/medical-professionals/pulmonary-medicine/news/regenerative-medicine-in-lung-diseases/mac-20483429
https://newsnetwork.mayoclinic.org/discussion/new-discovery-may-unlock-regenerative-therapies-for-lung-disease/
The new research centers on alveolar type 2 (AT2) cells, which play a dual role in the lung. These cube-shaped cells secrete surfactant proteins that keep air sacs open, but they also act as reserve stem cells capable of regenerating alveolar type 1 (AT1) cells — the paper-thin cells that form the surface for gas exchange. This regenerative capacity makes AT2 cells essential for lung repair after injury.
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1 ReactionThis is interesting. When I had the sweat test for CF as part of the workup before joining a study for MAC treatment, the nurse who administered it said there is some theorizing that BE and CF are related on a continuum vs separate conditions. However I couldn't find much of anything indicating that online. (My sweat test & genetic test were both negative and other than my mother developing mild adult-onset asthma, we don't seem to have much lung disease in the family.)
@lvnl I found a paper from a top Chinese hospital that CF is a spectrum, depending on what genetic mutation ( variance) the patients have, and also Asian has different mutation from Caucasian in CF. Asian CF has less symptoms than Caucasian CF, mostly showing as frequent BE infections and/or frequent sinus infections. That makes me feel BE may be another form of CF, but in a less severe form. My genetic test shows I am a carrier and my sweat test shows negative. But if I develop another mutation, I will show more CF symptoms. Of course many healthy adults are also a carrier. That means if both parents carry such a type of mutation, the child will be a CF. If only one parent carries it, the children will not develop CF, maybe just BE. In one word, BE and CF are in the same family. That is why NTM is so recurrent because patients have the genetic defects.
I am not a doctor. I just do some research and find this correlation. Please correct me.