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RP or idiopathic??

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Hello,

I am currently in the middle of the RP debate. Do I have it or not?

I travel to see Dr. Trentham and Dr. Armin Ernst at Beth Israel

in Boston. I am greatly relived to have found qualified caregivers!

I am 39, married female (3 kids, 15, 11, 9) with a hearing loss in

'92, persistent cough and " asthma " for the last 2 1/2 years. Turns

out, I had a tracheal stenosis which made breatheing increasingly

difficult.

I had a rigid broncoscopy on 11/01/01 with steriods injected into the

site, by Ernst. Also a tracheostomy (placed 10/04/01)was removed and

is healing nicely. I have none of the other symptoms associated with

RP.

Biopsies (taken by my local ENT during a questionable procedure) were

not definative of RP. If stenosis reoccurs I will be biopsied

properly by Ernst. I will be seeing Drs. Trentham and Ernst again in

two weeks.

I am slowly regaining my strength but the wonderful aspect is the

abitlity to breathe and cough in a natural manner. I can go up

flights of stairs and even do 10 jumping-jacks with no gasping! I've

not tested any further yet but hope to get adventurous soon.

My main concern now is trying to get HealthNet to pay for

out-of-network care. Actually, my husband is handleing that along

with everything else in the household. I sincerely hope I recover

before he wears himself out.

Trucks

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Hello,

I am currently in the middle of the RP debate. Do I have it or not?

I travel to see Dr. Trentham and Dr. Armin Ernst at Beth Israel

in Boston. I am greatly relived to have found qualified caregivers!

I am 39, married female (3 kids, 15, 11, 9) with a hearing loss in

'92, persistent cough and " asthma " for the last 2 1/2 years. Turns

out, I had a tracheal stenosis which made breatheing increasingly

difficult.

I had a rigid broncoscopy on 11/01/01 with steriods injected into the

site, by Ernst. Also a tracheostomy (placed 10/04/01)was removed and

is healing nicely. I have none of the other symptoms associated with

RP.

Biopsies (taken by my local ENT during a questionable procedure) were

not definative of RP. If stenosis reoccurs I will be biopsied

properly by Ernst. I will be seeing Drs. Trentham and Ernst again in

two weeks.

I am slowly regaining my strength but the wonderful aspect is the

abitlity to breathe and cough in a natural manner. I can go up

flights of stairs and even do 10 jumping-jacks with no gasping! I've

not tested any further yet but hope to get adventurous soon.

My main concern now is trying to get HealthNet to pay for

out-of-network care. Actually, my husband is handleing that along

with everything else in the household. I sincerely hope I recover

before he wears himself out.

Trucks

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