Bronchiectasis diagnosis, anyone else have it?

[moshow9]

In December 2013 I developed severe asthma. I've had asthma since birth but my regular fast acting inhaler, nebulizer, or even cortisone shots at the doctor's office did not help. For about 5 months I was on a steady diet of prednisone, a rotating cocktail of antibiotics, and on various different inhalers, while my doctors (pcp, pulmonologist, allergist) tried to get my breathing under control. Initially, an authorization for a CT scan was requested by my pulmonologist and denied by my health insurance. Subsequently, my pulmonologist also requested a procedure called bronchial thermoplasty. After many appeals and denials, I was given a final denial by a 3rd party review in March of this year. In between this, all the steroids I had taken caused avascular necrosis (AVN) in both of my hip. Feb. 24 of this year I had a total right hip replacement, while my left hip is scheduled for total replacement July 7. My breathing has been such a problem with bad flare ups that, despite my condition (AVN) and pulling me off steroid based medicine, my pulmonologist has needed to place me back on these medications due to the severity of these flare-ups when they occur.

Fast forward to about a month and a half ago. My pulmonologist requested authorization for a CT scan again, this time it was granted. The results of the CT scan were said to show bronchiectasis. When I returned to hear the results, it was explained to me that I had some phlegm (hardened or thick mucous) in my lungs that needed to come up. Not doing so could cause respiratory infections. I was to receive a vest that vibrates (Smart Vest), which I would have to wear x times a day and run x amount of cycles. I received the unit late last week and began using it. Oddly enough, I figured the phlegm would be coughed up and that would be the end of it - at least that was how it sounded getting the results. But I began researching the condition (I know, I should have done so sooner) and have come to find out that it is a non-curable progressive obstructive lung disease. I assume the two negatives here don't cancel one another out (asthma and bronchiectasis), though it would be quite nice if that were possibe.

So far I have not had any affect with wearing the Smart Vest. I currently wear the vest twice a day, running 3 ten minute cycles with increasing frequency (htz) each cyle. In speaking with a respiratory therapist with Electromed (Smart Vest), I was told that I may see results (phlegm coming up, decrease in fatigue and shortness of breath, reduced coughing) in about a month or two.

I was wondering if anyone else here has been diagnosed with this and can possibly offer their experiences in managing and treating this condition.

 

[AKC]

I can't say that I have, but I will send up positive thoughts from the Pleasant Valley for you...

 

[gadgetgeek]

Thats rough man, I know what its like to be on the short end of the medical stick, but at least now you know what you're fighting. And now that you have a diagnosis, hopefully you can get better care. (and if your doc has their way, they will be using this as a case to help others with their insurance.)

 

[floridaclipper]

I haven't been through this but have been through a serious pulmonary issue with an immediate family member the most recent was a complication of something else. The vest wasn't used but a specialized hospital bed that vibrated was. They also did percussion therapy and provided meds to help loosen the phlem to make it easier to cough up. There were a few times suctioning had to be done. At critical periods a bi-pap/c-pap machine was used to assist with breathing. It helped a lot but it is very drying on the mouth..a minor issue compared to the benefit. I insisted on contact precautions ie anyone who came near him had to wear gloves, gown, mask to help protect him from infections. They are so easy to get. We also did breathing exercises which help strengthen the lungs such as pursed lip breathing and using an incentive spirometer. Read anything and everything on the subject. Some treatments and meds were not offered until I started asking questions about them just take care it's from a reliable source. If you are ever in the hospital if possible ensure a responsible family member/friend that knows your wishes is with you at all times that can act as your advocate even if it's just for comfort needs especially during times of shift change. Patients get better care when the staff knows they are being watched.

I'm so sorry you're having to go through this and that your insurance has given you such a hard time. I'll keep you in my prayers today.

 

[floridaclipper]

One other thing. Dr's hand out antibiotics in faster and greater quantities than a grandparent gives sweets to their grandchild. Ask questions. Excessive use can cause other complications such as yeast infections and C-diff. Probiotics may help. Disclaimer - I'm not a medical professional.

 

[moshow9]

Thanks for the responses guys, and for the information floridaclipper - I shall indeed continue to research this and will be going to my pulmonologist to ask many questions that I did not know I would have to ask the last time I had my appointment for the results. I am sorry to hear of your family member going through what they did and I hope they have recovered or are on the road to recovery. I did receive a incentive spirometer prior to my first hip surgery so I will begin to take that up again. I do also agree with antibiotics being given out fast and in large doses.