Written by guest contributor Matthew Hallisey
Published August 27, 2019
“Get busy living, or get busy dying.” — Ellis Boy “Red” Redding (Morgan Freeman) in The Shawshank Redemption (1994)
My father Joe suffers from polycystic kidney disease. More precisely, he suffers from a common treatment of the disease, dialysis. While his kidneys no longer function as a result of the cysts that have developed, he is not in any significant pain from the disease. Rather, the thrice-weekly dialysis treatments he must undergo in order to replace the critical functions of his kidneys have worn him down. Pain due to age and enduring the hours-long process — with needles inserted, blood drawn and pressure checked, and handfuls of medicine ingested daily — have taken their toll. Younger, stronger men who have endured less have quit earlier.
Joe, who is 93 years old, inherited the disease from his father, who died from PKD at only 51, around the same time kidney transplants began. My father has outlived his own dad by more than 40 years, a remarkable feat that is due in no small measure to research funded by organizations such as the PKD Foundation, early diagnosis, and advances in medical technology and treatment.
Not eligible at his age for a transplant, Joe chose to undergo daily peritoneal dialysis at home, with the assistance and support of his wife (my mother), Maureen. The daily process was very labor-intensive, cumbersome, and exhausting. It required overnight treatments that were uncomfortable and became too much for a man in his late 80s. He was determined, however, to live for his family and grandchildren. As a professional engineer and retired small business owner, he was the ideal patient: disciplined, focused, and precise. To this day, he measures fluid intake as carefully as a chemist titrating a lab experiment. He follows his physician’s advice and watches his diet, exercises, and tries to get rest.
But it’s taking a toll on him. Joe’s energy level has declined. It takes longer for him to recover from any activity. He aches. His sleep is irregular. Simply putting socks on is a painful chore. He is in almost constant pain and can’t do all the things he once loved to do: woodworking, cutting the lawn, or performing chores around the house. Joe has even lost the taste for his favorite beer: Rolling Rock!
Recently, Joe has begun to discuss with my mother and our family the possibility of ending treatments. Why am I doing this, he asks? What is the purpose? He wanted to hold on for my mother and promised to continue beyond a grandson’s wedding this past spring. But, it is a struggle.
The challenge for my dad is his mind is sharp as ever; his body, however, is breaking down. He has made a choice: to live rather than wallow in misery. My father is determined and has hung in there because he wants other, younger patients to benefit from any research based on treatments he has undergone. Joe is a proud World War II veteran. He raised six children and has 19 grandchildren he adores. He is very devout and his faith in God is strong. But in recent years, he has lost friends and family members, making him question the value of extraordinary measures.
A patient with chronic kidney disease such as PKD does not have to suffer alone. My dad is very fortunate. He has stayed alive — and thrived in some ways — despite the disease because he has a strong support network of caregivers, family, and friends who visit him in the facility, probably more than other patients. Dialysis may be wearing him down but the disease has not defeated him.
This year, I proposed legislation that would have established a PKD awareness day in Connecticut to help my father and inspire others to support funding for research. More attention brought to the disease could lead to earlier detection, diagnosis, and treatment.
For various political and strategic reasons, however, the bill was revised and Senate Bill 1091 established the first week in September of each year as Kidney Disease Awareness Week. This bill aims to “raise public awareness of the associated presentation and available treatments for chronic kidney disease or kidney failure, the need for artificial filtering or dialysis, kidney donations and kidney transplants, and the diseases or conditions that impair kidney function such as diabetes and hypertension and the various types of kidney disease such as polycystic kidney disease.”
Alexis Denny, the PKD Foundation’s Director of Government Affairs, provided tremendous assistance, support, and resources, including the number of people in Connecticut who suffer from ADPKD, which was shared with lawmakers and officials in the Connecticut General Assembly. Alexis’s written testimony on behalf of the Foundation in support of the bill carried a great deal of weight with lawmakers, who approved the bill unanimously. Public Act 19-152, which designates various days and weeks, was signed into law by the Governor on July 9.
The support of Joe’s family, friends, and caregivers; the PKD Foundation; and public policy advocacy have all helped him and others battling the disease. You can make a difference, too. Sign up now for Advocacy Alerts and become a PKD advocate.
Update: September 18, 2019
Joe’s last day on dialysis was Friday, August 30. He courageously decided to end the procedure and died peacefully at home surrounded by his family two weeks later on Friday, September 13. Please see Joe’s obituary for more information about his life and funeral arrangements.
Matthew Hallisey is managing principal of Matthew Hallisey Government Affairs, LLC, a full-service government relations and lobbying firm in Glastonbury, Conn. More information about Mr. Hallisey and his firm can be found on the website, www.mhga.net.