Monday, July 09, 2007

Government: FUBAR

I had my blood tested last Thursday. I'd started having some stomach problems and the rashes and itching had gotten so bad I could not tolerate it anymore. My rashes had turned into sores, they had gotten so bad.

They took about a quart, it seemed, so I hope it shows something.

I see the oncologist again on the 18th and I'm hoping he will have found some way for me to get the tryptase levels tested.

My internist heard from Dr. Robyn at the NIH and her office is telling me that I have to have the tryptase level test before I can be admitted into the NIH study. The lab work would be sent to the Mayo Clinic. And I would have to pay for it. But, I have NO money.

Seriously. I'm selling stuff on ebay to pay my bills.

So, I emailed Dr. Robyn with a nicely worded WTF? basically. I thought I was being considered for a DIAGNOSTIC study!? Do I have to have the 3 doctors diagnosis confirmed by blood work to enter a DIAGNOSTIC study??

And guess what? She emails me back that she's no longer with the NIH and will refer my inquiries to the appropriate panel.

Pointless. Hopeless.

Meantime, I've gone back on my antihistamines and am barely conscious most of the time. I had adjusted so that they hardly bothered me but now I've got to do it again.

But, thank God!! The itching is now tolerable. And I can breathe, mostly.


Anonymous said...

My husband was diagnosed with systemic mastocytosis last year and did go to the NIH and see Dr. Robyn twice. He had already had the bone marrow biopsy and aspiration, as well as the tryptase level test. Basically, they did some blood work there and took extensive medical history from my husband. They told us to go home and our local physician could follow up with him as well as anyone could since there are really no specialist doctor to see locally. They said if there were changes to follow up in about a year. He did go back about a month ago and found out that Dr. Robyn was going to leave. We are now relying on his local primary care doctor who has done extensive research since my husband was diagnosed. I am sure that there will be someone taking her place at NIH, so I hope that they will consider letting you come. I know that it is very difficult for you with no health insurance. At least we are able to have insurance through my job. He is not able to work.

Affordable Payday Loans said...

Its nice to know that you got okay. thanks god.

Piia said...

How are u??

Anonymous said...

how are you? you've been another masto sufferer i am of course worried!


Anonymous said...

cmon someone respond

I am starting to get worried about kat in south carolina

if this doesn't change soon then someone needs to start chronicling their own progress on here...

Bridget said...

I hope you are doing ok. I have my own masto blog now;

I'm going to link to you, and I hope you are ok or start posting again

Piia said...

KAT???? Where are u???????

ssi chicago said...

Get Well soon.

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