How did I get here?
Sister Margie & baby Lara
Volunteering Elizabeth St, Garden NYC
Sister Margie & Lara in NYC
Rome 2019
1969
While doctors have not been certain why I have kidney disease, my current nephrologist agreed with me that it is likely from the medical issues that occurred when I was a baby. I became skinny and sickly in my first year.
In both 1969 and 1970 I had major surgery for a pinched ureter and other complications at the Wright- Patterson Air Force Base military hospital in Ohio. I was on antibiotics for a long period of time as well, had frequent UTIs and urine was backing up into my kidneys. All a recipe for trouble.
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Fast Foward to 2008
I was not diagnosed as a child with FSGS and over the years there was never really any signs of the disease, however in hindsight, I never had a lot of physical energy. Kidney disease is very stealth.
Then when I was 40 years old a doctor noticed something was off and after further testing I was diagnosed with Focal segmental glomerulosclerosis (FSGS ) confirmed with a biopsy at Mount Sinai Hospital in Manhattan.
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FSGS is a disease in which scar tissue develops on the glomeruli, the small parts of the kidneys that filter waste from the blood. It is a progressive disease, meaning it tends to worsen over time. This progression can lead to a decline in kidney function and eventually kidney failure.
2023 to now - yikes!
For about 14 years my EGFR held steady between 24 and 30. (estimated
glomerular filtration rate, is a blood test that estimates how well your kidneys
are filtering waste from your blood) Normal range is 90 or higher.
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From 2009 until 2022 my doctor in NYC thought I'd possibly make it through life
without ever needing dialysis. But after being admitted to the emergency room
at Cedars in 2023 for a UTI that was not treated quickly enough my
numbers started to get worse. None of my doctors can tell me why this incident started the further decline of my kidneys, but they all note FSGS is a progressive disease.
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Things really took a turn for the worst this past Fall as my numbers declined further. It was traumatic at the time, I felt like life was closing in around me. I couldn't help but think about the possibility of only having 10 or 15 years left if I had to go on dialysis. I educated myself about transplants and dialysis and with the support of good friends, family, feline & human, and colleagues I am in a much better place mentally and feel ready for
whatever is to come. I also have a great mentor from the Kidney Foundation who
has been through a similar situation.
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I am now bouncing between 13 and 16 eGFR with symptoms being tired most of the time
and regular leg cramps - but staying as active as I can caring for my rescue kitties, and
doing water aerobics three times a week and of course working full time! Luckily my
boss and company have been very supportive of my situation.
Check out my blog for more updates!
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