re: Spec's forwarded message

[Guest guest]

Spec -

I am a 61 year old member of the board. I ws doing deep water aerobics 5 times

a week two months before an unexpected shortness of breath came upon me. My

local pulmo-dude diagnosed me with " some kind of Interstitial Lung Disease " . He

said he knew it was not tuberculosis, sarcoidosis or COPD. He put me on 60 mgs

of prednisone a day and then left the country for two months. Things got real

bad at that point and my GP had to pick up the pieces as there was no one in my

pulmo-dude's clinic that could assist me at the time. After dropping that guy I

just worked on trying to get my blood tests back to normal and the medically

induced diabetes II under control. Here I am 4-5 years later and feeling much

better because this last year I actually found out that I have PF. I have been

told by specialists at National Jewish that it is NSIP with suspected connective

tissue roots. My new local Pulmo-dude doesn't really want to be involved but is

because I told him it is his job (I am sure I am not his favorite patient). I

will probably go back to National Jewish to get direction and information to

bring back to my pulmo-dude here. I am still working my concerns as I keep

getting the feeling that all of the doctors in my area just want to wash their

hands of any PF patients. My other limitation is of course, insurance. Trying

to find a pulmo-dude within the restrictions of the insurance company (they all

have their list of doctors). I understand the frustration, but please get a

diagnosis by an IPFNET center of excellence. It makes so much difference.

Stefani 61 year old Utahn (originally from MN)

ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

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> Thank you for your reply, Beth.  I'm 71 and diagnosed for 1yr.  Just

returned from 10 days in Israel.  Had a hard time 'keeping up' at some

locations; but, enjoyed the trip, nonetheless.

> The dry cough that I experienced was annoying.  Saw from on-line research

there was a study at J-H.  They accepted me and I had to travel to Baltimore

three times for double-blind study that lasted for three twelve week segments. 

> The first twelve weeks it was obvious to me that I was taking the

Thalidomide.  My cough ceased and the side effects began.  Constipation was the

worst.  When I stopped, the cough did not return until the cold weather began

this winter.  Fortunately, I live in LA and the severe weather is minimal.

> As a result of having participated, I receive the drug, gratis.  It is a toxic

drug.  It does make one sleep, also.  Dreams are affected.

> The goal of the study is to have T approved for the cough indication.  At that

time, it should be approved for Medicare and private insurance.

> No one is willing to give me a prognosis.  I'm not looking for guarantees,

but, would like to know what the history of others has been.

> When I quit riding my bicycle due to the weather, I was riding 5-6 miles with

no problems.  I'm anxious to resume and determine if I'm still able to do this. 

I was 'spinning' for 30 min. three times a week until about 14 mos. ago.

> I welcome any and all info.

> spec

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