New to everything

[HellCat]

Hello to everyone.

I've been a member for a while now and thought I better introduce myself. I'm new to all this kidney stuff, and have been diagnosed with FSGS
I'm curious though when the time comes, would I really want a transplant or not considering the FSGS is a recurring disease in the new kidney. I don't know but this is all so overwhelming right now. Thanks for allowing me to be a member of this great site.

Respects

HellCat

[Sluff]

Welcome HellCat,

I too have the same questions because I also have FSGS. When I was first diagnosed, I saw only the bad in this disease but then in time and reading this site, I realized I'm one of the lucky ones. I'm being treated with cyclosporine and it has slowed the progression of FSGS but it will not eliminate it. I hope to put off dialysis for a long time. I try to look at the positives. Because of IHD, I can make the right decision when and if I ever need to go on dialysis. As for transplant, I have mixed feelings about it because I think unless you are faced with that in the here and  now, you can't make an accurate decision. Just my   

Great to have you here.

Sluff/ Admin

[Joe Paul]

Welcome HellCat, good to have you aboard.

[KT0930]

Welcome! Unfortunately, I don't know anything about FSGS, lots of other people here should be able to help you. You're in a great place!

[okarol]

Hi Hellcat,
Welcome to IHD - I hope you find lots of hope and support and some good info here too!
Not sure where you got your name, but I saw a WWII Hellcat at an airshow a few years ago - sure looked like a neat plane!
Best of luck to you!
Karol


okarol/moderator

[Bajanne]

Welcome to our caring and sharing community.  This is a great place to be.  Though I am not at all familiar with your specific situation, I know that they are many here who are and who can advise you accordingly.  So keep reading and keep posting.  There is a lot going on here.  So take advantage of it all.


Bajanne, Moderator

[bolta72]

Welcome, I hope you can delay dialysis as long as possible.

[Lucinda]

Welcome Hellcat.  Everyone here is terrific support.  When you can't get a direct answer from your doctors come here because without a doubt someone else will have been through exactly what you are going through.  This is the best place to get answers.  xxxxx

[goofynina]

Hi HellCat, Welcome to ihatedialysis.com, i am glad you have decided to introduce yourself, thank you.  I hope you are able to stay off of dialysis for a long long long time.  Please feel free to ask questions and post comments and/or concerns of your own.  Lookin' forward to hearing more from you 



Goofynina/Admin.

[kitkatz]

Hey hellcat. Sounds like you are in it for the long haul. Good luck and welcome!





kitkatz,moderator

[del]

Welcome Hellcat.  Good to have you here

[Jill D.]

HellCat! I was diagnosed in 1990 with FSGS. For years my I was only on BP meds (Lisinopril) to decrease the amount of protein I was spilling and Lipitor to control my cholesterol. I didn't end up on dialysis until 4/06 (at which time I was taking several meds). I had a transplant  in Dec 2006 (my sister was my donor). The docs told me that since my FSGS was such a slow progressing form, that it may not affect my new kidney, and if it did it would probably be a slow progressing form like with my native kidneys. However, they also told me that getting such a genetically similar kidney may increase the chance of recurrence. Anyway, since my sister was so willing to donate, and because DIALYSIS SUCKS, I was willing to take the chance! BTW - 7 months out, and things are going very well...I feel more like a "normal" person, even considering the immunosuppressants that I am on (which, fortunately, I tolerate quite well with very little side affects that I notice.)

[RichardMEL]

Welcome HellCat!

I am very much like Jill (except I haven't had the transplant ) - my FSGS is of the slow form also - it took 13 years from diagnosis (and they think I "got" FSGS much earlier then when I was diagnosed) for a need for dialysis so the doc said basically the same thing as Jill that if it DID affect a transplanted kidney it was pretty likely to also be just as slow so it was very worthwhile to go for a transplant.

Now your (HellCat) FSGS may be the nastier attacking form (I hope not!) and your situation may be different but I certainly suggest it is worthwhile to talk to the Neph about it.

If it's taking time for the FSGS to damage your kidneys then perhaps you have the "slow" form. Just a thought.

[Hawkeye]

Hello and 

[Laurie]

  Glad you found this site.

[rimbo74]

 


 

[tamara]

 

See You Around

Tamara xxx ooo