worried..

[Chelsae123]

hey guys I'm 18 years old with only 45% kidney function. I will be having a biopsy soon. can anyone give me any tips? They think I have FSGS.

[sylla123]

Hi Chelsae   I really feel for you  so young ,    I am not familiar  with FSGS ,,   but looking at this I found On the internet ..   it seems to be something similar to what my husband had , diagnosed in 2003 ,,   if you read this site you will come across Glomerulonephritis , which to me , not being an expert seems very similar ,, HIs immune system was attacking his own Kidneys !

kidney.org/atoz/content/focal  My husband is now 76 , so they kept him fairly healthy with drugs up until last March 2015 when his Kidney function went down to 6 , so for you at 45%   I think with a good team to look after you, you   have a long way to go    My husband went on to Dialysis last March 2015 , we did both get a very bad flu  just before  which I think it brought about dialysis sooner , but already his kidney function had got very low ..

We are under Leicester General Hospital , and they are just so fantastic ... Ask and ask away with all your queries with your team , as We have found that the Kidney Care  teams are just so dedicated to their subject , and I'm sure you will be taken great care of .. 

All the best , and let us know how the biopsy goes .. 

Susan   ( Sylla123)

 

 

[Chelsae123 in reply to sylla123]

Thank you so much! 

[Syreeta]

Hello Chelsae. Scary time. My kidneys failed suddenly at the age of 32 when my body attacked its own kidneys, I am very happy with my life with kidney failure, it helps to stay positive. I don't know anything about your condition but there is evidence out there that shows there is a slight possibility that your kidney function could improve through changing your diet and other things. It certainly worth looking in to and if it's not for you no worries. The programme I found was developed by a guy in Australia. Www.beatkidneydisease.com I think. 

[Hardworkthisbeingpoorly]

Hi there 

Sorry to hear this at such a young age ! If I was you I'd be asking questions about long term benefits and problems I should expect ? Like how long typically is the degeneration of your kidneys if you have FSGS?  Is it likely you will need to have dialysis? And in the long term eventually a transplant?  If a transplant is likely  ask how long do a good match kidney usually last ?  I'm just thinking because you are so young if a transplant is on the cards you could possibly be looking at 3 or more kidney transplants during your lifetime providing you look after your health along the way.  I had a kidney transplant just over s year ago and also had a pancreas as well the procedure known as SKP. So it was more intense than a kidney alone and recovery was even longer than I expected. However I'm now working full time again and apart from taking lots of medication my life is pretty much back to normal again.  

If you want any more help or advice just message me and I'll try my best to help you out based on my own experience 

Take care 

[Nicolala]

Hi Chelsae

I too was diagnosed with FSGS at 17 years old. I was extremely ill, mainly due to uncontrollable fluid retention. None of the traditional methods could reverse it and I started dialysis shortly before my 20th birthday.

This sounds gloomy....however, I'm now 45 (OMG how old lol), have been married and even had a child! I go to work and have a good life because of dialysis, not despite it.

So... tips:

Everyone's experience is different. Should you find yourself on dialysis at some point, this is my advice-

1. Stay as independent as possible. Get as much information as you can. Ask doctors, nurses, everyone. That way you stay in control.

2. Have a life! Go out, do your thing. Don't put your life on hold. Go to college. Get a job. All these things help to be 'normal'.

3. Keep friends. Don't isolate yourself. Accept help.

4. Be careful with diet and fluid. ( sorry, had to mention that )

5. The most important thing is this: you are dialysing so you can have a life. Not living just to dialyse. Stay positive. It's worked for me for 25 years lol.

These may not be the tips you were looking for. Feel free to ask more specific questions. If I can help, I will.