Hello Again!

[Fox_nc]

It's been a little while since I've been here, so I figured I'd reintroduce myself ...

I have had kidney problems since birth and had my first transplant at 16.  My mother donated my first kidney and it lasted 11 years before it began to have issues. I went back on dialysis in September 2006 - which is when I first found this wonderful site and it saved my life! I was on hemo first and then PD until I had my second transplant in August 2007.  My second kidney was donated by my wonderful husband. Most people tell us we are lucky that he was a match, but I tell them it was his bull-headedness.  From the first talk of my transplant failing he said no problem, I could have one of his.  I tried to prepare him for the possibility that he would not match, but he would have none of it. "It will match" was all he had to say  Normally I hate it when he's right, but I was glad he was this time.

In February of 2009 my kidney began to "leak" protein. I had a biopsy which revealed FSGS (which I have never had before) and it was treated with a series of plasmapheresis treatments. Since then, I have had a total of three episodes where I had to have plasma exchanges, so to spare me future perm caths I am having a fistula created in about a week. 

For those of you who know me - I missed you! For those who don't - I look forward to getting to know you!

Sonja

[MooseMom]

Wait, now, let me get this straight...you had one kind of kidney problem when you were born, and then a completely different renal disease (fsgs) in your second transplanted kidney?  This is just so odd!  Or, maybe it isn't, I don't know.  Is there any relationship at all between the cause of your original kidney issues and the newly discovered fsgs?  Or is the fsgs totally random?  I find this to be fascinating!

Do you think you will try for a third transplant?

I look forward to getting to know you better!

[jessup]

G'day and 

[Fox_nc]

Don't blame you for being confused ... the docs are too! My orginial problem was reflux (my plumbing was put in wrong) No one tested for such things in the 70"s, so it wasn't caught until I had extensive damage. My native kidneys were removed before my first transplant because the damage was causing high BP. The first transplant failed because the connection between the transplant and me failed (ugh) A year and a half into my current transplant the protein leakage started. The biopsy showed FSGS - a brand new problem! BUT the FSGS wasn't causing the protein - I also have Donor Specific Antibodies (that's why the plasmapheresis) ... Its my understanding that you don't "catch" FSGS so I asked why it showed up at age 32 - the answer - no one knows. They know neither one of my living donors have it so they think that maybe I had it from birth but no one biopsied the first kidneys, knowing the damage was caused by the reflux. Here's the kicker ... the first transplant was biopsied 3 times in the 12 years I had it and it never showed FSGS. I have officially become a "case study" - again. During my last hospital stay in May, there was a conference at Duke and one of my nephs was asked to present my case.  From what I understand they got some good suggestions from the group there and they are hopeful. Currently my creatine is 2.2 and I am not looking at another transplant just yet.  I know I will need one someday, just not right now. When the time comes I will defiently do it again! Any time I can get without dialysis is a gift.

[okarol]

Hey Foxy girl! So good to hear from you again! I've wondered how you were doing but I figured no news is good news! Sorry you've had issues with the transplant but it sounds like your center is on top of it. Best wishes to you and that adorable hubby of yours! xoxoxo
 

[Fox_nc]

Thanks! I may live in a small hick town but I have a GREAT team on my side.  I am reading and catching up and I have to say that I DO NOT like some of what I am reading! I am beside myself about Susie, but grateful Kit is getting better.

[galvo]

G'day Foxy.

[jbeany]

Hey, you, welcome back!

[paris]

Fox,  It is so good to have you back.       

[peleroja]

Hi, Sonja, and welcome back.  Glad you found us again!

[Bajanne]

Welcome back to our community!    It was a pleasant surprise to see you post again.  Hope you stick with us this time. 
Looking forward to hearing from you.





Bajanne,Moderator

[Sluff]

Hey there Foxy one, he he.. We are now fsgs buddies... oh well  Glad to see you back. 

[Fox_nc]

Hey there Foxy one, he he.. We are now fsgs buddies... oh well  Glad to see you back. 

Oh good - I might need one - I just can't believe it showed up after all this time.