At age 63 I am still not on dialysis and am privileged with a good quality of life – I work part-time, take 2 personal interest courses, enjoy hobbies, eat most food, and do a mild activity.
So, what’s my problem? I think, “Well, I don’t have a problem”, especially considering how young others in my family have been when they died from this disease, or when they began dialysis.
But, sometimes it is frustrating and I allow myself to complain. My clothes no longer fit properly because of the enlarged and ever-expanding liver and kidneys; I feel nauseous and bloated after most meals; I feel cold for most of the year and wear several layers of clothes, indoors and out; I tire quickly after the least effort and need more rest, so am frustrated thinking of all I want to do but cannot.
So, who do I think I am to complain, all things considered? While acknowledging my individuality, I also see myself as part of a chain. My great grandfather died at age 43, probably of this disease; and his daughter, my maternal grandmother died of PKD in her early 40’s after being bedridden for 2 years. My mother lived to see 74, although spent her last 10 months in hospital after dialysis, a kidney transplant, and several hospitalizations. My younger brother and numerous younger cousins have also experienced kidney failure, dialysis and transplants. Some cousins have not lived to age 50 because of PKD and its complications.
Every medical procedure I undergo triggers memories of my mother and her forbearance throughout. My youngest brother, who died at age 3 of liver disease, is always with me when I think about my huge liver. My liver reminds me of his suffering and how lucky I am to have lived for so long and still be so well. My mother is always with me as the PKD takes its toll, like I’m living through her journey, albeit with more medical help and advanced technology.
So what? Everyone will get a medical problem some day, and we will all die. But, it is important to grieve our losses, and to acknowledge the emotional strain of having failing bodies and the loss of our abilities. We must acknowledge our occasional frustration, sadness, and fear, while also holding onto hope for a good day, and enjoying all that we have. Meaningful daily activity and friendships make life more fulfilling.
So, that’s it. Dealing with PKD is a physical and emotional journey. I am one in a chain and try to live my life in the best way I can, hoping also to be a guide for the next generation. So far, so good.