Crystal SET 2-37.jpg
Crystal SET 1-120.jpg
Crystal SET 2-37.jpg

MY STORY


SCROLL DOWN

MY STORY


COULD YOU SPARE A KIDNEY? 

This is not exactly something you want to blurt out to everyone YOU meet.  But when you are living with Advanced Stage Kidney Failure, it’s on your mind ALL THE TIME. 

I find myself observing people on the bus or the subway, going about their lives.  In all probability, they each have two healthy amazing kidneys.  Do they know how lucky they are?

Because I never knew how lucky I was. 

I never thought twice about my kidneys until 4 years ago. 

One morning, while getting ready for work, I suddenly felt weak, WITH A heavy sense of exhaustion I had never felt before.  I had to sit to finish brushing my teeth.

I had been feeling breathless for weeks but thought it was asthma or anemia, two diagnoses I had been living with for most of my life. 

But this…this was different. 

My roommate knew to immediately call an ambulance.  I was rushed to the hospital.  A battery of tests and a new diagnosis:  End Stage Renal Disease (ESRD).  My kidneys had been declining for years and now they WERE RUNNING ON FUMES.  And like so many of us with ESRD, I had no warning until it was too late.  My kidneys would never repair themselves.  I would need a new kidney or I would need to be on dialysis for the rest of my life.

And life on dialysis is rough.  It’s a burden.  It’s painful.  There are side-effects.  Fortunately, I am able to administer my own dialysis at home rather than having to go to a clinic multiple times a week.  But this means I need to be connected to a machine for at least 8 hours every evening.  My dialysis machine is a loud and heavy brown box that floods my abdomen with A dextrose solution and pushes toxins out of my kidneys.  If I travel, I need to lug this machine with me and hope that the airline has enough overhead space for it.  And…I have a curfew.  I need to get back home by 9PM so I have time to prep, connect and stay with my machine for 8 straight hours.  A 44-year single gal living in one of the most vibrant cities in the United States…with a curfew?   Total bummer.

And the side effects of dialysis (pardon my French) BLOW.  Nausea, vomiting, fatigue, muscle cramps come and go.  A type of infection called perintonitis is common (and has landed me in the hospital a handful of times).  I experience bloating and weight gain and have a really hard time losing any weight.  And I’m at risk of a hernia.  I need constant monitoring and medical vigilance. 

But enough of the “woe is me” crapola, because here’s the thing:  I AM LUCKY.  I was lucky to have lived 40 years without a kidney worry.   And I am lucky to be alive today.  Hooray for 21st century technology!  I also have incredible family and friends surrounding me with love. 

I am lucky to have been given a second chance.  A rebirth, if you will.  I call the day of my diagnosis my Rebirthday BECAUSE it’s the day I didn’t die.  And I very easily could have.  My kidneys were so far gone by the time this was caught that my heart was beginning to fail as well.  I could have had a heart attack.  I was this close.   But I didn’t.  I am alive and I am grateful.  I celebrate my Rebirthday every year with a massage and a special trip to my favorite hometown grocery store (Wegmans) for a chocolate CHIP MUFFIN fix.

But I look forward to the freedom from dialysis that only a new (to me) kidney will bring!  I have been on the waiting list for a kidney for a while now.  THERE ARE currently over 121,000 PEOPLE ON THE KIDNEY WAITING LIST AND ONLY around 17,000 OF US WILL receive a transplant this year.  it's like waiting to win the powerball; it's possible, but the odds are not exactly in your favor.  SO this website is an effort to change those odds and find my own livING donor.  Because I know you are out there!  So… welcome! 

 

All photography provided by Delaine Dacko.

Crystal SET 1-120.jpg

IT'S BEEN A WILD RIDE


IT'S BEEN A WILD RIDE