Having gone from diagnosis of IGA in Janauary 2014 and am now at eGFR 19.
It goes down by the week.
I work away and my neph wants me to have another biopsy to see if there is anything worth saving through IV immuno or IV chemo. My last biopsy showed 13 out of 17 filters were blocked. That was two years ago.
I am signing off work.
Is it wrong of me to just hope the biopsy reveals there is nothing there to save, and I can get straight to dialysis? I am not taking it lightly, I just dont see the benefit of chemo or IV supression.
Isn't it better just to get onto dialysis and try and get back to work and lead some sort of normal life?
Timescales
Moderator: administrator
Re: Timescales
jonnylefox,
I understand entirely where you are coming from - but your own even if struggling kidneys, will give you better quality of life than dialysis. The hope is that immunosuppressive or chemo treatments will allow your kidneys to recover to some degree. Admittedly this may not work as many on this site will tell you, but it has to be worth a try.
It's all part of the great roller coaster of CKD.
Best wishes
Sue
I understand entirely where you are coming from - but your own even if struggling kidneys, will give you better quality of life than dialysis. The hope is that immunosuppressive or chemo treatments will allow your kidneys to recover to some degree. Admittedly this may not work as many on this site will tell you, but it has to be worth a try.
It's all part of the great roller coaster of CKD.
Best wishes
Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
On transplant and paired exchange lists.
Transplant 9/5/15
Re: Timescales
Other members of the forum will be able to talk knowledgeably about IGAN.
However, dialysis is tough....
If I'd had any chance of preserving my native kidneys, even for a while, I would have taken it!
Good luck.
Mandy
However, dialysis is tough....
If I'd had any chance of preserving my native kidneys, even for a while, I would have taken it!
Good luck.
Mandy
Re: Timescales
Hi Johneylefox,
I would go along with what sue has said, the choice is always yours.
If I had to make that choice, I would talk it through with my renal team, by telling them I had doubts about any advantage the treatment would offer. If, after this talk I had doubts about saying , no, then I would say, OK let's do it.
Whilst dialysis is good, it is a compromise, and after a while you do become aware of this.
Good Luck.
I would go along with what sue has said, the choice is always yours.
If I had to make that choice, I would talk it through with my renal team, by telling them I had doubts about any advantage the treatment would offer. If, after this talk I had doubts about saying , no, then I would say, OK let's do it.
Whilst dialysis is good, it is a compromise, and after a while you do become aware of this.
Good Luck.
Re: Timescales
I think it depends on how you are feeling. I know I felt like death warmed up until I went on dialysis
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Re: Timescales
Hi Johnylefox
Totally understand where you're coming from as my GFR is 12 and I'm just wanting the inevitable to start, to get it over with. I think this disease affects people differently I've been lucky in a way as my GFR was 30 in 2010 and has declined very slowly but at a steady rate so I've had time to adjust and I think I haven't been aware of how bad I feel as it's come on steadily. Hope you find some way forward and all the best with whatever you decide.
Kind Regards
Stephen
Totally understand where you're coming from as my GFR is 12 and I'm just wanting the inevitable to start, to get it over with. I think this disease affects people differently I've been lucky in a way as my GFR was 30 in 2010 and has declined very slowly but at a steady rate so I've had time to adjust and I think I haven't been aware of how bad I feel as it's come on steadily. Hope you find some way forward and all the best with whatever you decide.
Kind Regards
Stephen
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- Joined: Thu Aug 07, 2014 3:57 pm
Re: Timescales
Thank you Steven and I hope your situation is resolved as soon as possible.
Did you try any IV steroids or chemo? Did that have any effect?
Did you try any IV steroids or chemo? Did that have any effect?