Christmas Eve – 25th Kidney Anniversary
This Christmas Eve is the 25th anniversary of finding out I had a kidney problem. Technically it was a few months to find this out. However, when I gained thirteen pounds the night of Christmas Eve, I suspected out there was a problem. Turns out that is a lot. And it was before eating Christmas dinner, or even breakfast for that matter. As I continued to gain weight, my family was very supportive. They called me “Puff Daddy”.
After a couple of months donating blood, [they never give it back], lots of tests, some ugly and and meeting with a nephrologist I was told I had nephrotic syndrome. That’s Greek for your kidneys are not working. He told me I had a 50/50 chance of kidney failure. Well, that does not sound good.
So what I have learned in the last 25 years.
1] There are guesses why I got this disease, but no one knows. For me it does not matter. Most everyone has their stuff and wasting time on “why me” is silly. Why not me. Stuff happens. Time to move on.
2] For me, moving on meant living my life as best I could. I had a family, business, and a mortgage. I also thought no one cares, I have to continue to make a living and be a parent. The side affects are loss of protein, vitamins, and of course gaining water weight. I took diuretics to help with the water weight. This pretty much meant going to the bathroom every 1-2 hours 24/7 for several years. No continuous sleep at night and a drive to the Twin Cities had a lot of stops. The real side affect of the disease the first 4+ years was being tired. Really tired. At the same time, I knew I could continue to do all the things I had to do.
One thing I chose to do was continue to ride my bike and do bike tours. The summer of 1999 after completing a week long bike tour, I realized I could no longer ride my touring bike I bought a recumbent which is very easy to ride. One fall, I was sent to see the Nephrotic specialists at the U of MN. When they found out I had ridden over 1,000 miles that summer including a 450+ week tour, they could not believe it. That’s when I first realized your body is going to hurt anyway, so you might as well do something.
Over the years I have met a lot of people who are working and playing with serious health ailments. It is important to listen to your your body and health care professionals, but never let a health problem or anyone tell you what you can or cannot do. I cannot tell you how many times over the years I said silently to myself, “FU, I am going to do this”.
3]. After four plus years of feeling like crap my nephrologist in Fargo put me on Cellcept, the kidney transplant drug. Within a few months, my kidneys were functioning normally. I woke up one morning with this new feeling. I slept all night and felt good for the first time in years. Always be thankful for the simple gift of just feeling good. A nephrologist later called this remission for me.
Prescription drugs are a vital to health care. I would probably not be around without them. But it is our responsibility to understand the pros and cons of each drug. And there are always cons. I think the high of prescription drugs I took daily was 14, now its 9 plus supplements. Most are kidney related one or another.
For example, from the beginning of my diagnosis the nephrologists suggested I go on prednisone. I always asked the same question each time. What are my chances if I do this. The answer was always the same, 50/50. Next question was what if I don’t? Again 50/50. Nope not doing that. In all fairness, the doctors thought it was worth trying and I also suspect wanted to have notes in the file saying I was offered the drug and said no. For me, it made no sense. Why put my body through all that if did not improve the possibilities.
Remember, if a prescription drug deals with the current problem but the drug also makes your life miserable or shorter, that is not win, that’s a loss.
4] I had my fair share of dealings with our health care system, not just with the kidney issue, but also other stuff. The vast majority have been very good to excellent. All most of the health care workers from technicians to specialists have treated me with empathy and strived to provide me with the best health care they could.
I believe on an individual basis, the heath care system can be very good. I have seen this first hand. On National level, the health care system is completely dysfunctional and not sustainable. The per capita cost of health care is over $12,000 annually. The next closest Nation is Switzerland which is under $8,000. Our health care can be fixed and improved. But it will take intelligence and long-term planning to do so.
5] Anyone who has a health problem soon realizes people say a lot of dumb stuff to you. My advice, consider the source, ignore them and move on. One thing we have learned the past few years, there are a whole lot of people out there who are missing a lot of fries from their happy meal.
Though it is important to plan financially for the future, not of us have any guarantees going forward. I learned this first when my dad was killed in a car accident and reminded of it 25 years ago when I was told I had a 50/50 chance of kidney failure. Enjoy today. I have to remind myself of this all the time.
I went out of remission in 2015 and after a couple of infusions with a high powered drug I went back into remission in late 2016. In early January of 2022 I was feeling great. By the end of January I knew I was going down hill which was later confirmed. In the next few months I gained 35 pounds and lost most of my energy. I still biked 70+ miles one day.
By the summer of 2022 I was pretty sure it was going to be game, set, and match, especially when I got Covid. I was no fun to be around. But I was fortunate, I had all the Covid shots along with the boosters. Without those, I suspect I would not have survived Covid because of the side affects of the kidney problem. Also fortunately, the new drugs eventually started to work, I lost all the weight I had gained and got my energy back.
In January of 2023 I started playing pickle ball and went from beginner to a competitive intermediate player. Some think I have become obsessive with pickle ball. No, I have become obsessive about the the chance to do something new and get better at it. Knowing it can be taken away at anytime is a real motivator.
The first few years I never talked about having the disease. I doubt if ten people, maybe not even five knew how tired I was. The last few years I have changed and now talk about it whenever appropriate. Kidney problems are not uncommon, just not talked about. There is a reason there are a lot of nephrologists. In the last year two close friends have reached out to me after they had been diagnosed with kidney problems, thought different from mine. I hope they have found some comfort in having someone to talk to who has had kidney issues for a long time and still around doing stuff.
I closed my consulting firm this summer along with revamping my website to write about various subjects which are of interest to me. One of them is health care.
One of my life motto’s is a man was sad because he had no shoes, but then met a man who had no feet. There is a lot wisdom in this expression.
Happy Holidays to all and may all your weight gain be normal.