Meet Kathy, a passionate ALF Advocacy Ambassador and loving wife and caregiver to husband, PJ, who underwent a liver transplant in 2018.
PJ and Kathy met in April 2000 in what Kathy would call a “coincidental meeting delivered by fate”. As Kathy shares, “That evening, my roommate and I went out for a night on the town. Upon arriving at our first destination, my roommate ran into someone she knew who was there with their cousin, PJ. I immediately recognized PJ as a manager of the local grocery store who I thought was cute, but never had the courage to talkto him. I took the opportunity to innocently ask him if he worked at the grocery store to which he responded, ‘yes, actually I do.’ The four of us hung out the rest of the night and sparks flew between PJ and me. This may sound silly but when we shook hands at the end of the night, I saw my entire future flash before my eyes – I knew he would be in my life for a long time.” After that coincidental meeting, the rest was history for Kathy and PJ—dating for the next three years, getting engaged on Christmas Day in 2003 and then married two years later. Now the couple has two wonderful sons together, Aaron, 17 and DJ, 15.
On June 21, 2012, their picture-perfect world changed when PJ, just 37-years-old at the time, was diagnosed with stage four colon cancer. After noticing blood in his stool, PJ contacted his doctor who suggested he come in for a precautionary colonoscopy. Scheduled just days before they were supposed to celebrate their “lucky number seven” wedding anniversary in Las Vegas, the colonoscopy uncovered a mass the size of a grapefruit spanning across PJ’s lymph nodes, lungs and liver. The couple quickly went from celebrating their union to facing a vastly different reality consumed by a five percent survival rate after three years. “Initially, we were shocked,” says Kathy. “We were overwhelmed and in disbelief of the profound challenge we were just presented with, but that night we agreed to allow ourselves one day of sadness and despair and then, we would fight like hell.” Kathy accompanied PJ to every appointment and diligently wrote down every detail. She got copies of his post-care reports and scanned through dates and serial numbers of the devices used on him. “I vowed to share the struggle with PJ and from there on out, it became our disease,” she added.
Doctors informed the couple that they were going to be aggressive with treatment – he was young and had no other risk factors. PJ underwent more than a dozen surgeries and procedures, learned to live with an ostomy bagand had around 120 rounds of chemotherapy. In October 2017, all the cancer in PJ’s body had been eradicated, except for in the liver and unfortunately, his bilirubin was too high for them to safely administer his chemotherapy treatments. The couple found a laser procedure that specifically pinpointed cancer cells and destroyed them. It wasn’t covered by insurance, but they were able to fundraise more than $10,000 for PJ to obtain this treatment. Despite the treatment working, it caused PJ’s liver to shut down and on Christmas Day 2017, he was admitted to the hospital and diagnosed with liver failure. “Our only hope for survival was a lifesaving liver transplant but we had been told, sick bodies don’t get organs,” shared Kathy.
Kathy says, “Thankfully, our oncologist found a clinical trial studying organ transplantation in cancer patients and made the call to refer us. With that, we drove six hours each way for testing, evaluations and more with the hopes that someday, PJ would get a new liver. As time went on, he got sicker and weaker, but finally, in May 2018, we got the call. We sped to the hospital and after multiple tests, it was determined that the liver was a match and PJ was brought back for transplantation. I waited for what seemed like an eternity and at 4:30am, I got word that the transplant was successful, PJ was in recovery. I broke down in tears for so many different reasons.”
Now, PJ is nearly six years post-transplant, and the family remains cautiously optimistic. “We understand that complications may arise at any time but realize what we have been through gives us the strength and courage to tackle whatever comes next.”
“While the role of caregiver is not always something you ask for, it is a role you must commit yourself to one hundred percent. Being ’the healthy one’ can lead to feelings of guilt, puts added pressure on caring for othersin the family and can hinder your own personal career goals, but none of that compares to seeing your loved one survive and thrive,” says Kathy.
She goes on to share, “I take immense pride in being able to support my husband; to watch him progress and recover makes me feel less helpless. Going through this first hand has encouraged me to volunteer and help others any way I can, which is the reason I became involved in ALF’s advocacy program. ALF offers an extensive array of caregiver resources, ranging from support groups to educational resources surrounding the intricate emotional and physical demands of life as a caregiver.”
“Throughout PJ’s medical journey he would repeatedly say, ‘I am fighting so hard for our family,’” shared Kathy. “And I cannot stress enough how proud I am of PJ. He is the ying to my yang and we truly went through this together, which made our bond and partnership even stronger. True love conquers all.”
To find caregiver resources, visit liverfoundation.org. To join ALF’s new caregiver support group, Sharing the Journey, an ALF support network for caregivers, register for free here.