Merry Kidney Anniversary

I was playing pickle ball with my favorite pickle ball partner, J, against a couple, C&M, who are good friends and excellent PB players. Actually, I am not sure the couple actually likes me and I am probably J’s least favorite partner.

Anyway, there is a lot of banter between C and I when we are playing but this time I felt I crossed the line and was inappropriate. Later, I sent him text apologizing. He texted me back and said he did not know what I was talking about. So, what I learned is my jerk behavior is no different than my normal behavior. Well, that sucks.

Later J and I were talking to another pickle ball couple who I thought I may offended and apologized for being a jerk. They said I was not so I asked J if I had been a jerk lately. A woman of few words, she said yes, and walked away. Ok.

But the reality is J was correct and I have been a jerk lately. The reason, which is not an excuse, is Christmas Eve will be my 27th year anniversary of realizing I had a health problem. I gained 13 pounds over night and had not started eating yet. After weeks of testing I was told I had nephrotic syndrome which is greek for kidney decease. I was told I had a 50/50 chance of kidney failure. This begin a new journey of continual doctor appointments and labs along with daily prescriptions and supplements.

I have never felt sorry for myself or the universe is out to get me. On the contrary, I feel very lucky to still be here and have done lots of cool things. When I was first diagnosed, 27 years ago, I was told I had a 50/50 chance of kidney failure. In the past 27 years I have been out of remission 60% of the time, the other 40% of the time, though I did not feel good, I still worked and did a lot of cool stuff. About three years into it I was sent by my nephrologist for a second opinion at the U of MN medical center. They asked me if I could exercise. I said I just got done doing a 500 bike tour. They were amazed. Early on I realized my body was going to hurt if I was doing something or not, so might as well do something.

In the past three years, two of my close AZ friends were diagnosed with a kidney disease. I was one of the first calls each made because they knew I had been living with a form of the disease for a long time. The reality is kidney disease is very common, much more common than many realize. It is estimated that one in seven Americans, about 37 million people have a form of kidney disease with the majority of those not realizing they have a kidney disease.

There are two broad categories of kidney problems, acute kidney injury and chronic kidney disease. It is the chronic kidney disease which many Americans do not realize they have, at least initially. I was told my kidney problem had probably been there for some time, but until the quick weight gain, I did not know I had a specific problem. Prior to that, I just didn’t feel well.

So if having a kidney disease was a game, whatever happens going forward, I’ve already won. I beat the odds.

So why was I being a jerk. It had nothing to do with PB, but it was coming out on the PB court. Maybe other places too. I don’t feel sorry for myself. I truly do feel blessed. After a time of self-reflection I realized the problem. I was tired with the grind. Most who have dealt long-term with a health condition understand the grind. For me it’s taking and tracking ten or more prescriptions a day along with supplements. It’s watching what I eat and planning meals in advances as best I can. Staying hydrated. Exercising. And labs and doctor’s appointments every quarter. It’s being positive when the numbers are not good and not getting too excited when they are good knowing that next quarter may be different.

I think fall is a trigger because that’s when I see all the specialists [four] and my GP. The rest of year its hit or miss depending on numbers, but fall is when it all happens and the doctors communicate with each other.

I have an amazing extremely intelligent GP and this fall we had a brief talk about the future. Most doctors try and stay away from this conversation and say things like “who knows” or “time will tell”. But the reality is with mine and frankly with many if not most people with a disease that is not going away, unless something else happens, this will not end well. The GP recognized that I needed to have this conversation and so we did.

So with some help with the GP, a come to Jesus meeting with myself and unknowingly help from my PB friends who either could not tell the difference from my jerk behavior and normal or did not care, I am ready for the grind for another year. By the way, J and I played in a mixed doubles tournament a couple of weekends ago and took 6th out of 17 teams. The two games we lost were close 16-14 and if had one them, we could have won the entire tournament. Recently in open play I was in a group of some advanced players. I am mid-intermediate but held my own. I am getting better and to get better at something at this point in life is pretty cool.

So for others who are in the grind, I would suggest the following, don’t be a jerk but if or when you are, give yourself some grace.

For those who know someone in the grind, you don’t have to put up with jerk behavior, but empathy once and awhile is nice. The grind is real.

Find one or more things of which you can be passionate. In laymen’s terms, get out of bed in the morning.

Finally, someone once told me my Christmas present that year was the disease. No, that’s not correct, I already had it before it was diagnosed. My Christmas present every year is I am healthy much of the time and I have been able to do a lot of cool stuff. There were a lot of years I did not think I would live long enough to see my future grandkids. Now they are all here and they know I am the cool fun grandparent.

One of my life mottos is “I was sad I had no shoes until I met a man with no feet”. It’s a good motto to remember when things are not going well.