Deanne's Story

[Deanne]

I've been lurking here for a month or so and finally gave in to the temptation to register. I'm 43 (I think -- I lose track!) and was first diagnosed with nephrotic syndrome as a 9-year old. When I was 30, I finally had a biopsy that diagnosed FSGS. I'm very lucky. I still have about 30% kidney function and live a mostly normal (dialysis-free) life. My nephrologist tells me every time I see her that she's amazed. I've been at 30% for about three years, even though I spill 3.5 grams of protein/24 hours. I'm not sure how to take her amazement. Should I be happy or upset about it!?

She put me on a low potassium diet last month and I've been learning a lot here about good foods / bad foods and coming up with a lot of questions to ask my Dr. I knew dietary changes would be coming, but knowing it's coming is different than when it happens! I hate it and don't know if I'm being successful with it. I just learned here yesterday that chocolate is bad -- oops! I'm a chocoholic and haven't been limiting it! I'll re-run bloodwork next week and will know then if I'm on the right track or if I need to see a dietitian. I'm hoping to learn I can cheat a bit more than I have been, of course! I'm a dairy junkie and miss my daily latte!

I had high hopes that when my kidneys finally give out, my younger sister would donate to me and I'd skip dialysis entirely. She already offered and I'm a hopeless optimistic. Of course I know without even being tested that she'd be a perfect match! However, things might be changing. Her 13-year old is now spilling protein, so my sister must be a carrier. My whole family sent in blood and urine to a genetic FSGS study. I hope none of the vials broke in the mail!

On the normal life front, I'm single and have seven 4-legged "roommates" (five cats, two small dogs). I walk for exercise and am ramping up to walk in my fourth marathon in the fall. My mom thinks I'm nuts / that I'm going to hurt myself by walking so much, my nephrologist is happy with me for staying fit. Like any "normal" person, I don't listen to my mom. :-)

I live in Oregon and am gainfully employed as a full-time technical writer. I wanted a career that doesn't necessarily require my presence in an office setting. I'm hoping that if / when the time comes for dialysis, I'll be able to work from my dialysis chair.

Hmmm. This is getting a bit long, isn't it!? Did I mention I write for a living? I talk very little in person, but can be downright chatty in writing!

Epoman, thank you for the site! I've hung around other kidney sites, but this one seems to have the best and most honest information. I tend to be a bit blunt myself at times and appreciate the bluntness from other people, too.

Goofynina, Rerun, Sluff, and bajanne2000: you do some great moderation!

okarol, I check the news articles you post almost every day -- thanks!

I'm looking forward to getting to know y'all better!

Deanne

[Sluff]

First I want to thank you for the compliments to the Administration team.

Welcome to IHD, Deanne and thanks for coming out of the closet.

Your story and mine have some similarities except i wasn't diagnosed until May 2006. I try to stay busy but my fatigue level is high maybe due to other health issues but it is great that you are so active. I'm sure your activity level is what is keeping your kidneys at check.

I hope you have many more years of being dialysis free. If you have been lurking for awhile then your probely familiar with our chatroom, maybe we will see you there sometime.

Again welcome to your new family at IHD. 

Single? Check us out at http://www.renalromance.com


Sluff, Moderator

[Bajanne]

Hi there, Deanne!  What a lovely intro - just the kind that Epoman likes!  So glad you decided to join us after lurking.  And thanks for that shout out to the admin team.  We really appreciate your appreciating us!  Please continue to post.  That is what keeps this site alive.  How about add your  to our dialysis story?
Welcome to our community!  You will find we are there when you need us.  When you are going through whatever, this is another caring family that you have.

Bajanne / Moderator

[kimcanada]

Deanne:

What a nice intro, I was at 30% for a very short time, and mostly blame my diet, so what you are doing is so very important, a walking Marathon sounds great!

Kim

[shay_pcb]

Not too burst your optomistic bubble, but jsut bc she's your sister doesn't neccessarily mean that she's a perfect match. My younger sister was going to donate to me, but I'm A- and she's B+. It is possible, and we have the same parents. That's jsut how it turns out sometimes...Anyway,  to IHD!!!

[Ohio Buckeye]

Welcome to the IHD Family Deanne!
Hope you stay at 30pc for a long time.

[Rerun]

Hello Deanne and welcome to our site.  Please feel free to be blunt.... then I won't feel so alone!   

I hope you stay at 30% forever and just amaze the sox off your Nephrologist!  There are lots of members who are not on dialysis yet but are just learning all they can now.  That is a great idea. 

Rerun, Moderator

[MJB]

Deanne,

Welcome to IHD.

Mike

[anja]

  Deanne, to the community!

[okarol]

  Hi Deanne,
Nice to meet you! I hope you stay healthy for a long time!
Glad to know you are reading the news, I read tons every day myself.
Karol

[Joe Paul]

Welcome Deanne, good to have you aboard.

[del]

  Good to have you here.  We are all here to support each other.







EDITED: Fixed Welcome sign error - Sluff, Moderator

[nextnoel]

Welcome! It's good to have you here!

[Deanne]

Thanks for the warm welcome everyone!

Shay, no worries about bursting my bubble about my sister as a donar. It's just my forever-an-optimist side that assumes she's a perfect match. I know even if she could donate, there are no guarantees. That's part of why I'm here. I want to be educated about all of my options so when the time comes, I can make educated, instead of rushed, decisions.

Deanne

[BigSky]

 

[angieskidney]

That is a great pic you have in your avatar!! I think it is great when we can see pics of members as we all post

Love it! 


 

[billoggblog]

Deanne's Optimism is a good thing, Keep it Up