Note: I also posted this in the Stage 4 section as the site doesn't seem to have a section dedicated to Stage 5.
I am currently in stage 5 of CKD. (FSGS) I am trying to find others in a similar situation to get an idea of what I should be feeling / experiencing. I realize not everyone will be the same but there should still be some common similarities. I feel like this will help me relate and potentially let go some of the frustration and/or depression.
I was diagnosed with CKD roughly 5 years ago. (@ 35 yrs of age) Everything was relatively fine (outside of a lower than normal GFR) until February of last year when I suddenly went suffered from Acute Kidney failure. Thankfully my Kidney function was restored but my GFR fell from 52 to 18. Since then, my GFR has slowly declined to the current level of 10-12. Now I am waiting on transplant testing / my GFR to fall to single digits for a transplant or dialysis.
Is there anyone else currently in Stage 5? (or even late Stage 4) If so, can you describe a normal day or what you experience in regards to pain / difficulties? I was diagnosed with Focal segmental glomerulosclerosis (FSGS) but I am interested in responses from anyone with all types of CKD.
I also have an ulterior motive as the specialist(s) believe the CKD is a secondary, if not a tertiary, condition but they are unsure of the primary. If I can compare different symptoms and group the similarities, perhaps I can see what is not common to assist with a determination.
I am at my wits end contending with this disease. My quality of life is beyond sub-par and I find myself exploring the darker parts of my mind because of this. I don't want to let this continue / fester as it will only hurt me, and my loved ones, in the long run.
Thank you to all that take the time to read & respond.