METHUEN — It can be scary to put anything on social media these days. Whether it be a family photo or an update about what’s going on in someone’s day, it’s weird to imagine anyone anywhere in the world can react or interact with things posted in the wilds of the internet.
A post about going out for the night or another day at work is one thing, but posting about the need for help with a serious medical condition is something else entirely. That thing was certainly felt by Sandy Reilly and her husband Bill when they started a Facebook page in September called, “A Kidney for Sandy.”
“I was nervous about it because, to me, everyone is going through something and they don’t put it out there,” Sandy Reilly said Sunday. “With this situation, if I don’t put it out there then I can wait on a list for five to seven years or I could put it out there and there might be just one person who sees it and goes, ‘Hey, I can get tested!’ and they’re the one. It was hard for me to put it out there though.”
“She doesn’t like to necessarily talk about it, she’s private about it. We both are,” Bill Reilly said. “I guess when it comes to something important like this, it’s good to get the word out. It was still kind of a touchy thing.”
The Reillys started the page to look for a kidney donor for Sandy Reilly, who was diagnosed with Polycystic Kidney Disease in 1996 and began experiencing the symptoms about a year ago. Those symptoms, including high blood pressure and abdominal swelling, stem from the disease causing clusters of cysts to develop in her kidneys. The disease often causes kidney failure over time.
Sandy Reilly is no stranger to PKD. Her father, Lowell native Fernando Sousa, was diagnosed with the disease in the early 1990s and had a kidney transplant in 1993. Her sister, Olga Gauthier, was also diagnosed with PKD in 1996 and had two kidney transplants in the past ten years. In fact, the idea for the Facebook page came from Gauthier herself, who Sandy Reilly said started her own page looking for donors around 2011.
“I think she just found it was a good platform to get the information out there and share it with people,” she said. “Facebook was new and it was a great way to share stories, so she took that route and it was very successful. She was always very optimistic about the outcome and how she’s approached life. Seeing her and how she’s lived her life has really given me a lot of hope and optimism that I’m going to be OK.”
The diagnosis was a bit tougher for her father to work through. Sandy Reilly said her father, Sousa, had no idea about PKD and the end-stage renal failure he was dealing with because of the disease. Though initially “stunned and scared” by the diagnosis, he started taking better care of himself and found a kidney donor. Unfortunately, Sandy said her father is in end-stage renal failure again and requiring a second kidney transplant. Though there is more information about PKD now, Sandy Reilly felt the fear of the unknown when her father first told her and Gauthier about his diagnosis 20 years ago.
“It was scary, not knowing what was going to happen to him because I wasn’t familiar with kidney failure and transplants,” she said. “I thought if he didn’t get a transplant, he was going to die. I didn’t know how long it would take to get a transplant.”
It was certainly a surprise to Bill Reilly when Sandy Reilly told him about it when they first started seeing each other while attending UMass Lowell. But even then, he kept a positive attitude.
“I do find that not a lot of people know about the disease,” he said. “When she told me I just said, ‘Look, that’s going to be for later on in life. We’ll just deal with it when it comes, I don’t know how we’re gonna deal with it but we’ll deal with it.’ It was about being ready mentally.”
With the symptoms having gone on for a year, Bill Reilly made sure to keep focused on helping Sandy Reilly. This ranged from helping her with her three different blood pressure medications to ensuring lab work is done in a timely fashion to getting the word out about the search for a donor, hence the Facebook page.
“I’m newly on Facebook just because I’m trying to advocate for Sandy,” he said. “I personally am not a candidate for donation, but I can try to do other things and I’m going to continue to get the word out. We’ve had a lot of views on the page from people sharing it down the line. It looks like we have about 32,000 views on the page.”
Sandy Reilly is scheduled to begin dialysis in mid-February. The Reillys have yet to find a donor through the page but remain optimistic, especially because of the numerous shares, views and comments they’ve been receiving on the page.
“It felt good that people are very caring and want to share my page and help out,” Sandy Reilly said. “I’ve had complete strangers reach out and say, ‘Hey, I’m praying that you find a donor,’ and ‘Hey, I was a donor five years ago and if you have a potential donor that has questions, they can reach out to me.’ I had one gentleman who went through the same thing send me a poem that he wrote while he was going through dialysis.”
Those looking to get tested to see if they’re a compatible donor with Sandy Reilly, or anyone else in need, can contact the Donor Nurse Coordinator at the Beth Israel Lahey Clinic at 781-744-2500.