My Renal consultant told me i have Scler... - Early CKD Support
My Renal consultant told me i have Sclerosing Glomerulopathy, With reduced function in both kidneys, Does anyone know what this is please?
Hi Suzi61
I think your doctor is referring to Focal and Segmental Glomerulosclerosis (or FSGS for short!) I am attaching a link to some information about this on the NKF website which I hope is helpful. Please ring the NKF Helpline on 0845 601 02 09 if you want to discuss this.
kidney.org.uk/Medical-Info/...
Pauline, NKF Helpline
thank you Pauline, I hve had a read, and this seems to be what the doc told me, thank you.
both my sons have this condition one son had transplant last year and the other is on his way to be needing one, but all cases are different, try and keep salt intake to a minimum, also potasium , drink plenty of water and exercise is good, if not into the walking or gym try swimming very good for all over health, if you smoke try and cut down also same with drink (alcohol) try not to have to much, but depends on what your gfr is at moment also your creatine levels, but most of all be positive, you should also have a renal nurse you can talk to about all the things that could happen, and different options of dyalisis they will go through all types as there is more than one option. hopefully you have support of family and friends, if you to talk i'm on here most days,or ask your consultant for more information, remember it's your body and condition always ask questions and for an explanation if you don't understand anything .. hope this helps
Hi Suzicute2.
I had the diagnosis over 15years ago, Since then a lot has happened, I must not have it bad, if that is possible, as since then I have been divorced, had my brother have gender reassingment , widowed, suffered cancer strangle my Sciatic nerve and moved abroad as I could not stand to be in the uk any longer, I try to live healthy, but the leg problem means I am not as active as I would like, constant sciatica etc. I do not drink any alcohol, my choice, and yes i do smoke, this i will stop at new year, determind now i am over 50 to start afresh. if that is possible, I did ask my consultant when he told me the name of the condition, and all he kept saying was, " well they are not as good as I would like them to be" blood and protine been in my urine for over 10 years prior to changing doc, and new doc told me that is not right, and reffered me to the renal unit in manchester. now i am out here, i do not have a renal nurse, but will be buying a place in the uk in the next couple of years. so will have to re register with a hospital then.
hi if moving back to uk the hospitals for renal units are new cross in wolverhampton and birmingham QE best one's I know of but this is because my sons have been to both the one who had his transplant is still with QE and other son still at new cross reason being after transplant you stay with the hospital that did it, my son's protine's were 3++++ and bloods the same also gfr was 8 and creatine was at 535 he had fistula done when gfr was at 20 to give it time to heal and grow..but he was diagnosed at the age of 24 and transplanted at 28 other son diagnosed at age 10 and is 22 now and only just on transplant list but thats not to say you will or have to have dyalisis depends on what type fgfs you have apparently more than one ? all I can say is learn to ask questions its your body and your condition so you are entitled too. also when did you have biopsy to determine condition and which hospital as they will be able to tell you more.. keep healthy x
