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Are the lungs or heart causing shortness of breath and no energy?
My husband has been diagnosed with Bronchiostatis and also Pseudonomas which was treated several times with antibiotics in the hospital and at home. The coughing stopped after that but now it is back again and sounds very congested again. He has given 3 sputum samples but evidently there was something wrong with them or a miscommunication between doc and lab. He will be 80 in Feb and also has congestive heart failure and is very tired most of the time and experiencing shortness of breath. He gets an infusion 1/x /mo. for CLL and then gets a little more energy. He just saw the cardiologist who said He is not sure if the no energy and shortness of breath is caused by his lungs or his heart. He has ordered additional heart tests and we are trying to get a sputum sample. Do any of you with brochiostatis and possible pseudomonas have any shortness of breath or tiredness? I feel like we are just spinning our wheels here and my poor husband is not getting any better. Thank you so much for your help. Miriam p.s. he calls himself "a medical wonder" 🤣
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Do you still have no energy and shortness of breath? If it has improved please tell what has helped. Thank you! Miriam
An Echocardiogram confirmed that my heart was most likely not the problem with no energy and shortness of breath. The cause has been my lungs with accumulation of mucous and inflamation, from bronchiectasis, and problems with drug interactions. Additionally, after a sleep study it appears that during a good portion of my sleep cycle my oxygen satuations goes down to 84%. Consequently, while I may note 8 hours of sleep, I'm tired all the time because my organs are not getting enough oxygen during the night. I am scheduled for a hospital sleep study in a few weeks to narrow down the issue, possibly with adding oxygen while I sleep.
Two things have helped my tireness and shortness of breath, bronchoscopy and steroids. Obviously I do not want to depend on steroids to help calm my symptoms. The best is to be vigilant in airway clearance, get good sleep and get out in the fresh air and walk!
How did the bronchoscopy help and exactly what steroid helped. Thank you very much for your help which could possibly help my husband.
I doubt that you can be tired because your organs get not enough
oxygen at night. I'd be looking for other reasons
I recall after previous bronchoscopies that my tests showed much improvement so I understand the usefulness of them. Being on the cusp of osteoporosis and therefore taking prolia, I also agree that things like prednisone have their place but at the expense of bone density/strength so one needs to be aware. I have found that the downside to being on prolia at my age (80) seems to make my immune system less able to fend off germs for inevitably in spite of eg masking precautions I come down with nasty flares that further irritate my lungs. The sleep study sounds like a good idea and it would be interesting to learn from you if oxygen supplementation while you sleep makes a difference since I am wondering the same and will discuss all of the above with my pulmonologist during my upcoming appointment. I did benefit considerably from 18 sessions of active pulmonary rehab and continue to utilize what I learned at home. Good luck!
Glad you mentioned the Prolia and what you believe you experienced with having taken it.
It has been recommended that I start the medication, Evenity, for my bad bone density test results -4 results. I am 82 + 7 months. Fell three times in the last 10 years and no broken bones. I have been 'lucky' so far.
Due to side effects I previously experienced with Actonel, Fosamax, and Forteo I have not wanted to take the meds in the past. The bone density tests now compared to when I tried the aforementioned meds is much worse. I haven't been on anything so far for the osteoporosis.
I wondered how the bone density meds might, or might not, affect the BE/MAI infection.
Giving much thought to what to do and have questions for pulmonologist and endocrinologist.
Barbara
My in a sleep lab sleep test is scheduled June 3. A preliminary home sleep study showed my oxygen satuation went below 88% 11% of the time, causing concern. I am using a cPap machine but have no events at all. Even though I log between 6-8 hours a night, I still feel tired and sleepy during the day. It'll be interesting to see what a more elaborate sleep study will turn up!
Thanks for the info on bone/density stuff. I also have issues with it and am currently not taking anything for it. Tried all the other drugs but no results. Actually what has helped me is tap dancing! Yes, I definitely increased the bone density in my spine tap dancing. I'm 79 by the way.
Thanks for your reply. We are purusing other avenues, currently I have a severly inflated right heart my pulmonologist says is a result of high lung pressures. That's why the interest in oxygen saturation during my sleep.
During the bronchoscopy, the pulmonologist washed out my lungs, clearing out all the mucous generated by MAC, bronchiectasis and the resulting inflamation. Next, I took Prednisone. Prednisone is the steroid of choice, which is not good for bone density, but the combination worked. I was no longer severely tired (couldn't get up the stairs), minimal breathlessness and actually felt good.