Being a dad with kidney disease is something that I never imagined when I was younger. Actually, I never once pictured myself as a person who would be challenged by kidney failure, even though I watched my dad “Big Gene” struggle with end stage renal failure all my life until his death when I was 12 years old.
Now, my weeks each have an automatic 16 hours at the dialysis center (20 hours with travel) during “prime time” completely scheduled for me until I receive a transplant. Those 20 hours are the perfect time for school games, plays, family events etc. This presents the challenge for a dialysis parent. I don’t want to miss dialysis and I don’t want to miss the event of my child. It is important for kids to see their parents at their events. And it is a big deal for me to be at the events.
I am happy to say that I am often able to change my dialysis time because my clinic works with me to reschedule it. (Shout out to Sallisaw DaVita, you Rock!!!!). I think timing is a big part of making a successful change to my dialysis schedule. As soon as I know I have an event to attend, I send an email to a few different staff members at my clinic. I also confirm with them verbally they have received it and to make sure we are on the same page. I am not saying I get every time changed that I want, but it is not for lack of effort. I choose my health over events because that’s what I expect of myself but I think others expect the same effort. For school or sporting events, kids often get their schedules early for the school year or the sports season, so that may help you make your plans in advance, if possible. As parents we don’t need additional challenges to show up, we are all in the same boat and most of us struggle with the same issues but in the end we all want the best for our kids and we manage the struggles as best we can.
As parents we also try to shield our kids in the hope of protecting them and I don’t know if that is right or wrong. But here is an example of whether to tell the kids when I go for a transplant. Being on the transplant list, my call for a transplant can happen at any time. So far, I have had four false alarms for a kidney. We get to the hospital to start the preparation for the transplant surgery, when there is a call from the social worker who tells us “You are not getting the kidney, there is a problem”. So, I praise God for the science and I find a way to praise God in front of my family and friends because I didn’t get a kidney with problems placed inside my body. Here is the parent side of the conflict for me. Do I call my 17 year old daughter and 84 year old “NannySue” and say “Hey, we are headed to the hospital – we got the call” to hear them congratulate me and praise the Lord for the call? But then, after I’m told there is no kidney for me that day, I have to turn around and call them back hours later to say we didn’t get it. Then they ask if something happened and I hear their trembling voices trying to hold it together because they don’t want to add to my struggle. I still don’t know what that answer is, but I know I want to protect their hearts and emotions.
I know many of us parents are motivated by the thoughts of missing birthdays, missing graduations, missing school plays, and even missing the life you have with your family. We try to stay as healthy as we can with whatever kidney treatment we choose. And for some of us, a transplant seems to be our best choice. I am on three transplant lists (you can be on more than one). All three are different and I think they might increase my chances of getting a kidney. But even if I don’t get one, I believe as a parent I owe it my kids to give it the ol’ college try. I would want them to try and I cannot expect them to try if I do not try.
To this day, the best part of my day after dialysis is when I walk in our door and as soon as I take two steps into our home, I hear the words “Daddy’s home” and I hear those little feet running full speed to hug me. In that moment, I know that all is ok in the world because I get that underserving title of parent and I’m “ just a dad with kidney disease.”