Looking for Mr. Kidney

Somewhere along our 30+ years together, Brett began referring to all animals as “Kitty!” and I started putting “Mr.” in front of objects, adjectives or emotions, whatever I was talking about.  For instance in the car, you might hear me say, I wish Mr. Volvo would just get off the phone and get going since the light is green or Thanks Mr. I can’t be bothered to help.  So it only seems naturals to title our gofundme account as “Looking for Mr. Kidney”

A little over a year ago, Brett, never having any real health issues, developed a blood clot the length of his leg.  While having his swollen leg examined, he was immediately admitted to the hospital for extremely high blood pressure. During a week stay in the emergency room, an endless parade of physicians, tests, ultrasounds, and x-rays, it was discovered that his kidneys were rapidly failing due to Polycystic kidney disease. Polycystic kidney disease is an inherited disorder that affects the kidneys and other organs. Clusters of fluid-filled sacs, called cysts, develop in the kidneys and interfere with their ability to filter waste products from the blood. The growth of cysts causes the kidneys to become enlarged and can lead to kidney failure.

We knew of the disease, because Brett’s father had dealt with the disease in the early 2000’s (hence the heredity.) At the time, Brett had tested to see if was compatible as a donor.  He was not, but at the time, they also did not think he was a candidate for the disease (ensue head scratching.) So imagine our surprise!

So needless to say we were blindsided by the consequences of the disease. We are uncomplicated people trying to live an uncomplicated life, but this has truly changed our trajectory.

PKD is incurable and non-preventable with dialysis or transplantation the inevitable outcome. We are currently pursuing both.  In March we started working with Medical University of South Carolina transplant team to get Brett on “the list.”  Once making the list (almost there), it may be 1 – 3 years before getting a suitable donor.

We also opted to train and receive home hemodialysis. That’s right we do dialysis ourselves in our own front room, without assistance.  This option allows the comfort of being home during treatment—while having access to on-call support over the phone.  It also allowed us to choose our time for treatments, providing the flexibility so we both can keep working.

I left my management role for an hourly, overnight position to give me day time availability for training for home dialysis, constant doctor appointments, treatment, procedures, etc. Less pay, but it has made it possible to navigate this new journey with Brett. Brett is still working fulltime and his co-workers and employer have been extremely supportive. Regardless, the endless co-pays, deductibles and services not covered by insurance has taken its toll. This is only the tip of the iceberg and once we find “Mr. Kidney” there will be the operation, hospital stay, and time off work to recover.

We have never needed to ask for help before, but we need help now. Any financial help would ease the stress of knowing how we are going to pay for all this and allow us to focus on getting Brett better. We would also appreciate any relevant advice how to navigate the process, inside information for organizations designed to support Brett’s disease and most of all, any avenue that will help us find and pay for “Mr. Kidney.”

If you have taken the time to read our story, we thank you!  If you can and will help in any other way… we thank you more!