Monday, October 28, 2013

In Limbo.

To end the suspense, I am not in an actual limbo contest, this is a health update.

The cat scan never happened. For one reason, one of my insurances wouldn't cover it. Although my primary would, my secondary wouldn't and I guess it needs to be all or nothing? I still don't understand that...

The second reason was that my doctor decided against it anyway. She didn't want to expose my body to unneeded radiation when it was really a long shot she was shooting for. She said that the cat scan should be the last resort when we have a better idea of what's going on.

So instead, she re-tested my factor VII and did a full thyroid work-up. That was to make sure there wasn't any cancerous cells returning or any sign of dysfunction on the remaining half of my thyroid. If there were, that could be what was doing it. (another long shot) Easy fix, so that's kind of what we were hoping for.

Unfortunately, my thyroid is fine and working perfectly. (I never thought I would say that sentence with a negative connotation!!)

Also on the negative scale: I still am showing that I am positive for Factor VII hemophilia. Which officially puts me out of her realm of care. She flat out told me she didn't know what to do with me, and that she had no answers because she has never seen a case like mine.

Makes ya feel good doesn't it?

Right now I am awaiting a call from the hemophilia center at UCSF to make an appointment. After some research on that place, I am fairly confident that if anyone knows what the heck is going on with me, it will be these people. They are one of the best places in the country for hemophiliacs.

I am still holding out hope that this is a small fluke of a problem and that it will be easily solved with some kind of medication, lifestyle change or a quick surgery or something.

It just doesn't make sense. None of it does. And it doesn't fill my body full of confidence that my doctor talked to Stanford and other respected medical institutions and they all didn't know what the heck was going on with me.

For now I am filling my time with the minutia of life. I am hoping it will keep my mind off the more serious things.

But I won't lie. I am freaking out a bit. I have been really trying hard to not freak out until there is something to definitely freak out about.

I have compiled a list of questions, every question I can think of. I hope the doctors can answer them all.

So again, more waiting. More unknown. And a ton more questions.



4 comments:

  1. this does not sound fun! I hope you get some answers soon.

    ReplyDelete
  2. My husband works for Grifols Bio, a company who specializes in hemophiliac medicine. He recommends looking into Grifols medicine and into associations who help with costs. Email me at stephanieplease.com@gmail.com

    Steph

    ReplyDelete
  3. When I had thyroid problems, they flat out told me it had to be cancer. But we did three months of testing and waiting and testing and waiting before they finally just did surgery. I understand the waiting thing. And I am sending prayers on prayers on prayers your way! :)

    ReplyDelete
  4. That's so scary! I really hope that you can get an appointment with the new center soon and get this all figured out!

    ReplyDelete

Thanks for taking the time to say something back! :) One sided conversations are never any fun! :) Thanks for reading!