Coughing in ICU

How Rachel spent the weekend in ICU.

Category:

Science & Technology

Tags:

• pulmonary
• cough
• tracheobronchomalacia
• Ehlers-Danlos Syndrome
• airway collapse
• tracheomalacia
• TBM
• tracheobronchoplasty
• EDS
• coughing
• blog
• health

[lifereinspired]

It's highly experimental and isn't performed outside of one location in the world, that I know of. I'm hoping to know more about the reality of the treatment sometime between now and August.

Thanks for your thoughts and encouragement. I wish it would get better too.

[lifereinspired]

They have told me for two years that in all of their experience they've never seen a case like mine. I've heard that over and over from drs at different hospitals and clinics in different areas of expertise. There are no more treatments developed for what I have and it's a degenerative condition in my case.

So I don't know what the future holds. I have only one avenue left to pursue and my drs are advocating on my behalf to see if it's a possibility that might benefit me.

[lifereinspired]

Since the coughing episodes improved somewhat after the ACD surgery, it's thought that the hypermobility of C4-C5 was irritating the phrenic nerve & was at least part of the trigger mechanism.

No, epinephrine hasn't been of benefit to me.

I've been to the major hospitals in Boston & a couple in Baltimore. I've been referred to specialists I could only have dreamed of seeing. The drs I have now are the ones who's names you see on the top research literature in their areas of expertise.

[lifereinspired]

They tried me on a short round of steroids but there was no improvement & I have severe risks when on systemic steroids so ultimately it was determined that the risk/benefit factor wasn't worth it.

I have had extensive allergy testing, that was one of the first avenues my dr pursued - sending me to a very good asthma and allergy specialist. I don't have anything that I'm allergic to so that was ruled out as a cough trigger.

[lifereinspired]

I'm just hoping that they will take my case & be willing to try the treatment.

[lifereinspired]

They've determined conclusively that it would not be of benefit for me as a treatment modality. (they told me if my airways collapse to where they won't open, they could do a temporary trach to keep me breathing but that ultimately with my co-morbidities, it would not be a long term option).Unfortunately, that leaves me at the end of any known treatment. My drs are helping me manage the best that we can at the moment & I'm being considered for some extremely experimental treatment.

[BASCKIT13]

give her spr

[3in38months]

Rachel, How are you? My son, Hunter has Tracheobronchomalacia. There are support groups on Facebook Living with Tracheobronchomalacia, We Hate Tracheobronchomalacia, Love for MalaciaBabies and Coping with Laryngomalacia. I hope you join us -Colleen



[gtibollo]

Oh my gosh, I hope this gets better. Are you on steroids to keep the swelling and inflammation at a minimum?

Have you had RAST allergy test to make sure you have no allergic triggers for your episodes.

Epinephrine does not resolve an episode?

[lifereinspired]

My follow-up this week (including a long exploratory surgical bronchoscopy) revealed that there was no evidence that I ever had a surgery - meaning that it was a total failure just nine months post op (they generally look at 10+ years of benefit from the surgery). I've had multiple airway stents as well (again, failure) & the possibility of a tracheotomy has been discussed by several of my drs for several months now.