Re: 1st day volunteering at Neph's

September 11, 2004

Bonnie Congrats on starting up! They are a neat bunch of people. I love that

office, they have played a huge role in keeping me positive. If I end up on

dialysis I will feel very comfortable in their care. It's the first doctors

office where I have felt comfortable with everyone, not just the doctor. It

makes you feel like you are in great hands all the way around. My appointment

is on Thursday the 16th....let ya know how things look then.

Amy

1st day volunteering at Neph's

Brief note (yeah right) to let you guys know, the first day volunteering at

the neph's office went pretty awesome yesterday. I " picked " their brains and

boy oh boy, I've got tons to learn, but am certainly on the right track of

learning everything. It is so much fun. The dialysis center is right next to

their office, but didn't spend any time there yet. I worked with the 3 nurse

practitioners and met with the research monitor who comes every three to four

months to make sure all the research study stuff is up to par and every one is

on the same wave length. COOOOLLLLLLLL, COOOOOOLLLLLL studies. I will let you

guys know what they are when I am able, but I think some of it is still " hush,

hush " right now. Pretty much " breakthrough " advances though. It is so awesome.

They're 5 nephs in the office and 3 N.P's. The dialysis center is managed by

DeVita, and they staff their own center, but obviously kinda work hand in hand

with this Neph office. Anyway, one of the nephs invited

me to an inservice he's giving for the NP's in the office Monday morning at

7:00 (Thank goodness it's before my " regular " job starts) on anemia in chronic

renal disease and Aranesp/ procrit. Guess I'd better do some homework.......

Anyway, neat neat group, and I'm so glad to have them welcome me and be so kind

to share their info. I may need to " pick your brains " as I learn this

stuff...hope that's O.K. Hope every one is hanging in there. Well, back to

work.........Bonnie

September 11, 2004

Amy, Best of luck on your labs on the 16th!!! Hope all goes really well. I know

what you mean about the waiting (your note to ). I wholeheartedly

agree. Man, that is the one of the hardest of all. When I was waiting for the

biopsy results, then the workup etc on the Fabry's it just seemed an eternity.

The genetic testing will take months to get the results back, but I'm not

holding my breath yet on that one yet, cause I'm still working on my part of the

data gathering before I can send it to Mount Sinai, then will take months

before they locate the mutant gene, (if they locate it). I met with the genetic

counselors here earlier in the week who were really helpful in helping me do my

" pedigree " , but now I need to email Mount Sinai, and find out if all they need

is Kidney related stuff, or my whole family history for 3 generations. That

would be a challenge cause my Grandma had 10 brothers and sisters. WHEW!!!!

The genetic counselors did mention that if I am indeed

a carrier or hemizygote (at least I think that is what they call it, I'm not

sure as I don't have my Fabry's stuff here with me at work today) then

has a 25 % chance of having a son with Fabry's, which is obviously a super drag.

But, I don't think I'll know my results until after she delivers in May. Just

wait and see and pray...... Anyway, YUP, you're right that office is GREAT.

And the NP's and Neph's are SUPER, as well as everyone else. Anyway I'd better

get back to work, great to hear from you, and again best of luck with your

labs!!!!! Call me for dinner anytime you can arrange it, and we'll get together

if you want. (still got my work #?) Bonnie

Amy Griswold wrote: