Re: Important URL Post from Hobb

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In a message dated 6/21/02 2:50:23 PM Pacific Daylight Time, Hob writes:

<< ,

I have just had an experience the list members may want to know about.

If you want to change doctors you may have to wait 90 days or longer for a

new patient appointment unless you happen to pick one up in an ER.

My Air Force Rheumy was due to leave in June so I made a new patient

appointment with my prior Rheumy the first of May. I could not get in to

see her until September. That did not seem to be a problem.

Then, my last blood test showed that my white blood cells had fallen very

low. My Cytoxan was decreased to 50 mg 4 days a week and 75 mg the other

three days.

I was to have another test yesterday and called the new Rhemy's office to

see if they wanted me to take the test there. They then informed me that

she would not be taking me back as a new patient and suggested I call another

Rheumy (thanks for waiting 5 weeks to tell me!!!). I did that and got a new

patient appt. for earlier in September than the other had been.

In a way I am thinking I might be happier with another doctor...the other

was very good but she is also a bit too serious and easily annoyed - she

would not let Leo just say what he needed to say. She just jumped in and

told him he had nothing to worry about. He needed to talk and she would not

listen so maybe we will now have a doc who is a little more sympathetic. I

think we were very annoying with all our questions and that is why she would

not take me back.

Back then she also assured us that the 80 mg of prednisone I was taking had

" stopped the clock " and I would not have any new inflammation. After that I

still had increased loss of vestibular function and developed peripheral

neuropathy in my legs -- all from RP or vasculitis that was still pretty

" active. "

Anyway my problem was that I have low white cells and no one to followup on

a new blood test and faced waiting until August or September to find out if

anything should be done. Most of the worst complications of RP are from

secondary infections and low white cells can make you susceptible to that.

I am scheduled to speak at a conference in Regina Canada on July 18-20 and

would hate to have to worry about coming down with something because of that.

So I called the Rheumy back and asked what I should do. They said I

should see a hematologist.

I called a hematologist's office and was able to get an appointment for next

Friday. I went to the Air Force Lab and had the blood drawn and will get a

printout of the results on Tuesday. So I will at least have blood work

followup for the next months until I get my new Rhemy.

The important thing for list members to consider is that if they are moving

somewhere and will need a new Rheumy they should make an appointment at the

new location at least three months in advance of their arrival.

If something happens like blood work needing attention and there is no one

around who cares, look for a hematologist as a " tide-me-over. " If they are

as easy to get in to see as the one I found here they could be a good back-up

when needed.

I also have to get a new internist and the first appt. I could get there was

in August. I called my Pulmonologist to recommend one.

My Pulmonologist told me when he first diagnosed me that he had other

vasculitis patients and I had the impression that he would be willing to

follow up my treatment.

I am considering asking him to be my primary vasculitis doc instead of the

Rheumy. But only because I know he knows enough about the disease.

In the meantime I am hoping that the hematologist will consult with Prof.

Dr. West in Denver if he thinks I have to decrease the Cytoxan or change to

Immuran.

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