A VanNote Journey


A Special Contribution by Amy VanNote

Amy VanNote and her family are residents of North Evens, NY. Since Amy is such an incredible local photographer, The Evangola Daily Post reached out to her and subsequently discovered her special story recently and asked Amy to share her journey with us.  We wish Amy and Greg every blessing and pray for their family’s continued well being and strength.

Our journey with Greg’s kidney disease/failure started one night in May of 2015. Greg has Crohn’s disease and had just had a follow up with his GI specialist. It was around 9pm and Greg’s phone rang. It was his GI doctor calling with the results of his recent bloodwork.

He told Greg that per the blood work, his kidney function was off and he wanted Greg to be seen by a nephrologist. He gave Greg a phone number of someone to call and told him to call the following morning. We tried not to worry, but knew that a 9pm phone call wasn’t a good thing. The nephrologist got Greg in the following afternoon and ran further tests and scheduled him for a kidney biopsy.

At the time, we figured it was probably just dehydration due to his Crohn’s disease and tried not to worry too much about it. We got married on June 20th, 2015. Two days later we got the results from the biopsy: renal failure due to over usage of methylamine, a drug commonly used to treat Crohn’s, which Greg had taken for an extended period of time years earlier. The medication injured Greg’s kidneys extensively.

The doctor immediately put Greg on a twelve-week regimen of an extremely high dose of steroids with a 50/50 chance that this could “shock” the kidney back into working order. Unfortunately, that didn’t work. After twelve weeks, blood work did not show any sign of improvement with the kidney function.

We were devastated, but his doctors did say that even though the kidneys weren’t functioning properly, with his young age and otherwise good health, we had a potential few years before Greg might get symptomatic, so we held out hope that time would be on our side.Four short weeks later, Greg became extremely sick at work (vomiting, weakness, etc.) His nephrologist saw him in the office right away that day and gave us the news that time was not on our side.

This was it. Greg’s kidneys were no longer functioning. He was pulled from work indefinitely THAT DAY and started his dialysis treatments 5 days later on November 11th. It all happened so fast.

The community of Evans rallied around us, and in February we had an ENORMOUS benefit. The monies raised were able to keep a roof over our head and food on our table. Not a day goes by that I don’t shed a tear when I think about the outpouring of love that was shown to our family. The Eden VFW was standing room only. We had 1,000 tickets printed and we sold out. The donations to the Chinese auction filled an entire room. It still leaves me speechless.

Greg was officially placed on the transplant list at ECMC in January of 2016. He was such a trooper through the dialysis treatments. He quickly adapted to his role of “stay at home” dad to our kids. We tried to keep life as “normal” as possible for the kids, always hoping and praying that we’d get a call for a kidney soon. That call finally came the morning of January 29th, 2017 at 7am. Greg woke me up that morning and said “It’s time baby!”

We hustled to the hospital and spent the entire day waiting. They had to run tests on Greg, and on the kidney before they gave us the official green light. Finally at 9pm that evening they confirmed that Greg would in fact be going in for surgery. At 12:04am on January 30th, Greg was wheeled in for surgery. That was probably the longest 5 hours of my life, but when the doctor came into the waiting room at 5am and told me that surgery had gone well, I felt like I could finally breathe again. I had been “holding my breath” for almost two years and in that moment I could finally exhale.

I saw the light at the end of the tunnel. I knew we still had a long road ahead of us, but I knew God didn’t bring us this far to drop us now. Luckily for us, within a week of surgery, the new kidney started to do its job! Greg’s blood work was showing great improvement with his kidney function. Within 14 days of surgery, Greg’s kidney was functioning like that of a healthy person. Doctors are saying that by summer, he could be back to work as a union sheet metal worker!

The VanNote family

Life is funny. We stood in front of all of our family and friends on that June day and said our vows “For better or worse, in sickness and in health”…and 2 days later we were given the news of Greg’s renal failure. I feel like most young married couples get to enjoy the “health” part of marriage before the “sickness” part. For whatever reason, God felt things needed to be the other way around for us. I didn’t understand why at the time, but today I do. This whole experience has taught me what sacrifice, commitment, and compromise really means. It has tested the boundaries of our sanity and our love for one another. I know that without a doubt if we can survive this, we can survive anything. This made us stronger, each individually and as a married couple. We are now looking forward to enjoying the “healthy” part of our marriage.

-Amy VanNote

Please visit Amy’s photo gallery on Facebook to see some of her beautiful work!