First great to see all the posts here from people.....helps knowing I am not alone.
While I had known for a very long time that my kidney function for below normal....no one quite sat me down and explained what that meant. My PCP never really said "you have only 40% kidney function left"....that would have certainly got my attention. The neph I was referred to could have done better than see me for 10 minutes and leave me with "well let's continue to monitor it and see where it goes"....all of this left me with a sense that "OK so kidneys are not functioning properly....but none of the experts here is raising alarm bells and ordering procedures....how bad can it be".
Fast forward 4 years I move to new area and get a new doctor and one first blood test he picks up the phone and calls me with "you have only 24% kidney function left" and referred me to a neph.....and now with a slew of tests ongoing....I am angry at not being explained what GFR numbers meant....scared that I am going to die....what will happen to my career, my kids, my marriage, my family. All these thoughts/information confusing and depressing me.....are the medicines actually hurting my kidneys and not helping (did that ACE+ARB therapy I was on for 3 years destroy my kidneys?), many cancer survival rates better than CKD, etc etc etc
The neph says at this rate I may be on dialysis in 2 years and prognosis post dialysis initiation is 5-6 years survival....so I am 42 now...I will be dead at 50 if my math is right!
Three months ago....I was looking at my 401K, thinking of applying for that promotion, buying new clothes, planning kids college education, scoping out new vacation destination....you know all the things you do when you are living. Yesterday I caught myself downloading "After death planning guide checklist" from the internet.....went down to the parking lot sat in the car and cried...prayed.....cried again...........
Going for biopsy in two weeks.....almost scared to go.....haven't heard any good news in three months....no ray of hope....just more dismay....afraid the biopsy is just going to confirm the prognosis.....I feel this mental torture and anxiety is destroying me from the inside more than the disease itself.....if only others can see that each morning when I kiss my wife and kids goodbye now for work....what thoughts cross my mind.....before I kissed goodbye...as a depsoit until I kissed hello in the evening.....now each kiss goodbye has a whole new meaning
anyways....thanks for listening....it helps share these feelings even if there may be no hope................