New here

[Ammzie]

Hi all,

My name is Amy and I'm 23 from Sydney. I was diagnosed with FSGS in Oct 2005 at the age of 18. In december 2006 I went on haemodialysis for a month and had a live donor kidney transplant (mum) in Jan 2007. Although everything worked generally ok I was in and out of hospital at least every 2 months after the transplant. July 2008 the kidney failed due to rejection and I was back on haemodialysis. I went on peritoneal dialysis in november and that worked great until March 2009 where I had a seizure due to hypertension 200/140 from the catheter moving, so back to haemo it was. In September 2009 the catheter was repositioned and worked generally ok, enough for me to live properly until April this year where I had another hypertensive fit 220/160.. Have been back on haemodialysis ever since. They used the fistula for the first time this week.. so thats my general story.

Amy

[Jean]

  Amy, glad to have you aboard.

[Quickfeet]

 

[okarol]

  Hi Amy,
Your story is similar to my daughter Jenna's. She started hemodialysis in 2005 at 18 years old, got a transplant at 21 and is now in rejection after 3 years. I wish she would come on here, its a great place for support and info. Maybe she will someday. Are you in school or working? Tell your mom she's a goddess - living donors Rock! Welcome, I hope to hear more from you!

okarol/admin
     

[RichardMEL]

g'day Amy and welcome - another aussie 

I'm so sorry your mum's kidney didn't last very long that sucks!! Hopefully you will be able to get another transplant sometime soon and it will last longer - we can but always hope. I'm surprised at how high those BP readings were - that's some scary stuff there

I'm glad you're with us and look forward to some more thoughts from you. Oh and glad that fistula is working OK!!!!

 

RichardMEL, Moderator

[Bajanne]

Welcome to our community!   We have a great group of Aussies here, so you are particularly welcome.  This is a great place to be.  So sorry that you have had to face such challenges at such a young age.   But I am always impressed with the strength of the human spirit, and I know you will do well.  And now you have a new family    and you can be sure that we will be with you all the way.   Keep reading and keep posting.






Bajanne, Moderator

[monrein]

   Amy.

[looneytunes]

Hi Amy and welcome to IHD!  You've landed in a great spot, lots of good info here as well as support from others living with renal disease.  I'm looking forward to getting to know you better...see you on the boards!   

[galvo]

G'day Amy and

[Rerun]

Glad to meet you Amy, and I'm so glad you found us.  I hope things get better for you.  You are too young for this crap!

I'm looking forward to your posts!

Rerun Moderator      

[MooseMom]

I have fsgs, too; I was diagnosed in 1992 and will probably start D sooner rather than later.  FSGS sucks big time.  I already have my fistula in place, but I sure don't want to have to use it.  I hope yours serves you well until you are transplanted again!  Welcome to IHD; we're all rather wonderful.

[Quickfeet]

I have FSGS Too! there are quite a few people here with it, if I remember correctly. I was told FSGS is really rare, but I don't know if that is true anymore.

I assume you have primary FSGS since you are so young.

[DianaJean6]

I have FSGS Too! there are quite a few people here with it, if I remember correctly. I was told FSGS is really rare, but I don't know if that is true anymore.

I didn't know what FSGS was so I googled it.  It said it was a common form of kidney disease especially in the U.S.

I don't think I have been here long enough to welcome you Amy but  anyway!

Diana

[Quickfeet]

Wow maybe I need a new neph. She told me it was very rare. It was the last thing she tested me for.

How many people have reached End Stage Renal Disease (ESRD), which describes a patient who is on dialysis or living with a transplant, as a result of FSGS?
NephCure estimates there are currently 20,078 people living with ESRD due to FSGS (2008). Chronic Kidney Disease (CKD) sufferers in various stages of FSGS number in the tens of thousands, at least. In total, 26 million Americans suffer from CKD, FSGS being one of the most common forms.

[renalwife]

Hi, Amy.  Welcome.  Nice people here.  I don't post much because nothing exciting ever happens in my life.  (fingers crossed).

You don't live very far from me...just across the little body of water.  I'm in San Diego, CA.   Sure. Perth is closer, but it's not any problem  to get to Sydney if you can charter a camel to cross the desert.

[kellyt]

 

[CharmedMist]

 
Welcome!