Re: Missy

[Guest guest]

Sue:

I'm so sorry to hear of your troubles. Call your docs and don't stop

until you get results.

Call weekly to see if cancellations were noted. They will get tired of

you.

Tell your docs you'll hold them responsible for your deteriorating

health if they don't help.

Sounds terrible, but sometimes that is the only thing that talks. I

work in the health field

and they don't like to hear that. At best they should schedule the

appointment for you

to be seen quicker.

Hope this helps some.

> Rpolychondritisonelist>

> Date: Friday, January 07, 2000 11:13 AM

> Subject: Re: Missy

>

>

> >It's all kind of scary. My main symptoms have always been

> tracheal-airway.

> I

> >had/have chronic epiglottitis and tracheitis and when I have a flare

> that's

> >where my symptoms are most prominent. This past summer I started

> having an

> >increased feeling of shortness of breath. Within a month I was

> experiencing

> >chest pain with the shortness of breath especially with exercise.

> Well, I

> >told my PCP. He ordered a Cardiopulmonary Stress Test... I think just

> to

> >humor me... Well... it took 6 weeks before he called me with the

> results...

> >Not good... It was abnormal and showed restrictive airway disease

> which was

> >new... significant change since my last Pulmonary Function Test I had

> done

> a

> >year prior.... well, it is 4 months later and I'm still waiting for a

>

> >treatment plan. ... I see Dr Luthra at the MAYO CLINIC and it's taken

> this

> >long to get an appt.... I find this all very frustrating. So my RP

> continues

> >to progress when treatment should have been agressive in my eyes....

> and

> the

> >symptoms have progressed, the shortness of breath... has increased...

> I

> often

> >wonder what the DOCs would do if they were in our shoes. I'm only 36

> years

> >old and have 2 yound children... I want to live a full life and there

> is no

> >reason why I shouldn't be able to... " They " really need to get their

> act

> >together... My PCP is good... don't get me wrong. I just don't know

> why

> they

> >can't coordinate my care more effectively... quicker when I am having

> an

> >advance in the disease. It takes forever to get to see Dr. Luthra

> too.

> > Does anyone have any suggestions? I hear stuff like about

> Missy... It's

> >really scary... I have been telling the dr's for a while now...

> >SUE

> >

> >---------------------------