NJH and bronchiectasis

Hi Ling
I did have a 6 minute walk test which showed very little drop in oxygen level. But I also had a videodysphagia (laryngoscopy) study which showed laryngeal obstruction and vocal cord destruction, suggestive of chronic infection due to NTM and coughing causing flaccid response, abnormal closing of vocal cords during inhalation & hyper responsive action (larygospasms) to the nerve ending surround the structures. Edema a erythema of superglottic structures with mild cobble stoning of posterior pharynx. Vocal cord abnormal partial adduction on inhalation, moderately severe narrowing of supra-glottic area during this phase.
In other words , the dyspnea was not due to actual lung structures exchange of oxygen, but the structural changes in larynx and vocal cords causing throat to close during inhalation eliciting a response of feeling breathless. The brain is also involved as it sends a message that something is amiss in the normal respiratory cycle causing me to feel like I'm not getting enough oxygen.
I was sent home with Diaphragmatic breathing, ILO/VCD Release Breathing technique and pursed lip breathing exercises and suggestion of referral to speech therapist who specializes in this area.
I already can see a difference in my breathing and energy levels, as well as my mental well being. Not to mention I am glad to be rid of that heavy oxygen concentrator that I was carrying around. I realize not everyone will have this type diagnosis, and they may require oxygen due to actual lung damage.
As a side note, I received a call from a Brinsupri Support Program Case Manager who informed me that the prescription is in the authorization phase, and I will be followed by an educator who will track my progress on Brinsupri.

Hi robot,
I can imagine how relieved you must feel that oxygen is not related to the
lungs. I also failed 6 minutes walk test after the recent flare up. But I
feel it related more to congested nose area, and I don't feel like I get
enough air in through my nose. But they will find it out. Did they give you
specific instructions on how to do ILO/VCD Release Breathing technique? I
just went over out of state patients process with NJH. Then I just wait for
their calls. How did you get into this Brisupri support program? That
sounds nice if they can keep track on you while you take the medication.

Take care!

Ling

Hi Ling
They gave me detailed printouts of all breathing exercises & had me practice them in their office. The support program evidently is part of the roll out of this drug by the drug company to insure safety & track results.

Did they not do blood gas tests to see if there is indication of needing oxygen or not?

No, they didn't do the blood gas tests, they just ordered the oxygen concentrator and told me to use it if I need it when exercising.
I hope I don't need it. Maybe it is good to have? In case when I have infections again, oxygen drops.

Ling

I am going to NJH next month for 10days, 6 days of treatment. I am only diagnosed with BE. When they first called me regarding my inquiry, they told me they do treat people with BE only. So if you want to find out about them or want to go, then just give them a call. They are very nice and concerned. Good luck. Roz in Scottsdale.

I also just returned from NJH with VCD and local structure dysfunction. I’ll do the recommended exercises (3) and follow up with a speech pathologist. Can you share with me what the ILO/VCD exercises are. I looked it up and it is taking a deep breath and slowly purse lip breathing out. Is there any more steps to this as I was not given this particular exercise. Thanks in advance.

I was just there but did not see the BE specialist because I did not have any positive mycobacterium cultures. I did see a pulmonologist, cardiologist and gastroenterologist with multiple testing from each group. Exhausting week but well worth the visit. I found my 02 saturations to be lower and increased effort to breathe while there. I had to take things slowly hydrate and rest. All symptoms improved once I returned to FL.

Understanding the structure & function of throat, vocal cords, larynx etc is important.
Diaphragmatic breathing - inhale full & deep without straining through nose. Expand abdomen (diaphragm) first then expand chest without raising shoulders. Exhale through nose.
Pursed lip slightly like blowing out a candle to exhale for 2x length of inhale.
ILO/VCD for when you experience laryngospasms. Relax shoulders downward & use diaphragmatic breathing. Try a sh or s on exhalation to remind brain, you are moving air. Also try exhaling through a straw or humming into a straw. Practice daily so it becomes muscle memory.
Avoid dry coughing - inhale short & quick sniffs through nose 1-2 x & exhale through tightly pursed lips for 2 to 3 seconds. Pursung the lips creates a back pressure in your throat and keeps the vocal folds from slamming together in a cough.