The Stealthy Thief

Kidney Disease is deceptive. 

It is a stealthy thief who quietly steals your kidney function, until one day you wake up to cascading health issues that all point to the fact that your kidneys and your life is in immediate peril.

However, some people do know that their kidney function is declining because a doctor can catch it during a Basic Met Panel. 

This is what happened to Michael. He has known for many years that his kidneys have been damaged. 

There are a variety of ways that kidneys can be damaged. His was probably caused by his long term diabetes  and high blood pressure. They were  symptoms of his many decades of undiagnosed Cushings Disease. And unfortunately for him, though he he has been able to keep his diabetes under good control, for the most part, his blood pressure never resolved. It was still a long term house guest even after his pituitary tumor was removed and half of the pituitary gland was taken along with the tumor.

Years ago, there was an attempt to control his blood pressure.  

One fine late summer morning, we discovered his blood pressure had sky rocketed into what is termed “malignant hypertension”. That morning, he walked into the hospital with blood pressure that was in the 285/185  range. He puzzled all the medical professionals with his ability to be functional and without symptoms. However, it was during this hospital visit, that his kidneys took a big hit and were damaged

He then spent 8 days in the ICU with a increasing number of blood pressure drugs being added to his “cocktail” of medications. He hit 9 drugs and an IV drip to get him within a range that made the medical professionals comfortable. 

Getting him off the drip proved to be a difficult process because his blood pressure went back to an unacceptable range every time they tried removing the drip.

In the end, they just had to send him home with his new array of medications. Neither the doctors nor Michael were happy. 

The doctors didn’t like the fact that his blood pressure was still elevated to what they felt was an unacceptable level. 

Michael was not happy because all the medications made him feel awful and he was unable to have a decent quality of life. The drugs kept him unable to do much beyond sitting in a chair and wishing he would go to sleep and never wake up.

Eventually, over the years and after another 8 day ICU visit for sudden blood sugar issues and increasing debilitation, he came across an endocrinologist who finally listened carefully to his story. This endo started the wheels turning for what became his diagnosis of Cushings Disease.

While the neurosurgery treatment was very, very successful for many of the symptoms of Cushings Disease, the damage had been done. Though his blood pressure went down, it never was adequately controlled to a healthy level. Many doctors encouraged him to take more medications.  Michael, however, was not willing to return to his days of ever increasing blood pressure medications that left him sitting in a chair,

So here we are today. 

He knew that the blood pressure was not good for his kidneys. He also knew that he was not interested in the quality of life that was being offered on the many blood pressure drugs. So he chose to live his life to best of his ability knowing that there were consequences to his blood pressure reality. He now accepts that his kidneys are failing. He is at peace with his decisions.

Of course, he also is at peace because over the years, he did try many other alternative ways to decrease his blood pressure. He did make many life style changes over the years to try to heal this issue.

One thing that he tried was meditation. He had been told that meditation would be helpful for his blood pressure. That journey started nearly 25 years ago. 

He explored Tibetan Buddhism first but then settled on Soto Zen Buddhism with its emphasis on what people would term, a type of “sitting meditation”. 

Being a child of the 60’s, he took to the practice like a duck to water. 

I was not interested in this new practice. It held no draw to me. I told him that I was sorry but I was not going to be following him on this adventure. 

So every morning he would sit by himself. 

Eventually though, as I saw the positive changes in him, I did join him. Maybe it was just to be supportive or maybe it was to help me deal with what was going on in our life. I don’t really know. But now there were two of us learning this new way of being.

As the years went on, when our daughter was launched and was fairly self sufficient, he realized that what he wanted was to become an ordained Buddhist monk/priest. After many years of working jobs to help support our family, he felt he had discharged his financial duties. 

Our daughter had developed a passion for computers. She was offered a great paying job repairing computers when she turned 16. This caused her to have to move from the little cabin in the woods that we lived in, to my parents house several hours away in suburban Minneapolis/ St Paul, MInnesota.

 I had been working at being an artist with his support and Michael felt he could now have a chance to do something that he wanted to do. This terrified me because the only Buddhist monks I knew about were not married. I thought he was going to leave me  and I cried. 

But he assured me that Japanese Soto Zen monks were allowed to be married and had families. This was the reassurance I needed to give my blessings and my support. I could support myself financially and I was happy doing my art. It was finally his turn to pursue his interests.

Then came the day, not long after, that we were visiting my parents and our daughter. 

Our 17 year old daughter came home from work, one day, to find me crying. 

“Mom! Mom?! What’s wrong Mom?”. 

“Amanda”, I replied, “Birth control fails.” 

“No!”, she says. 

“Yes!” 15 minutes earlier I had snuck downstairs to peak at the pregnancy test I had just done. 

When I told Michael, he was shocked. 

He said, ruefully, “Well, there goes my dream of being ordained. I now have financial responsibilities again.” I told him that, no, I was a strong woman and I could take on that responsibility. 

So I did and he continued to pursue his ordination. 

When I was 4 months pregnant, I went off on my own to North Carolina to run my face painting business for two months at a Renaissance festival there. Michael stayed behind to help his Zen teacher renovate a house in Decorah, Iowa to become the Decorah Zen Center. He did this to earn his plane ticket to Japan with his teacher for the training he would need as a Zen priest.

When our new baby was 3 months old, he was finally ordained. 

He then left to go to Japan for a 3 month training in a monastery up on a mountain side.

He sat for hours a day in a little spot on a tatami mat. He ate there and slept there for a time, until he got sent to sleep in a different room because his snoring was keeping his fellow monks awake at night.

Yet, there were many hours of sitting in a small area. 

The practice these monks were engaged in, was just sitting. Nothing more. 

They put themselves into a sitting position that allowed them to sit stable for hours at a time. Sitting immobile and allowing the universe to swirl around their pivotal point. They sat and conditioned their bodies to be the vessel that held their meditating mind. 

They sat with the world at large and they sat with their own personal world of their thoughts and aching legs. The legs were acknowledged but still they didn’t move. 

The thoughts perhaps raced so long, that they eventually tired and then quieted down. 

They learned to be at one with whatever their personal circumstances were, dropping off anything that was “extra”.  

They learned to be right there observing the world that was right there with them, seeing and accepting the world as it was each moment. 

As each moment arose with its different colors, they practiced greeting it with the same vigor as they had greeted the preceding moment. 

No matter if a moment was “good” or “bad”, it was just simply a part of their world. 

Each droplet of a moment streaming into the next moment and then joining together to become the river of a life that continued on to become one with the ocean of the universe
This practice has, over the years, strengthened Michael...or Fudo, which was his ordination name. 

We were watching a Netflix special on the mind (The Mind Explained) several evenings ago. It addressed the scientific effects of meditation on the brain. There are provable changes to the area of the brain called the amygdala. This part of the brain is where the key circuitry for emotion regulation can be found and meditation practices show positive changes in this area of the brain. 

A short aside: 

A number of years back, we we were searching for the cause of all the medical issues that we knew both Amanda and Michael were experiencing. This led Michael to a researcher at the University of Minnesota. He was studying a disease known as SCA and it was thought that perhaps this was the answer (it wasn’t). But a part of the work up was a MRI of Michael’s brain. When the doctor and his assistant presented their findings to Michael, the assistant called attention to an unusual finding in his brain. Dr D waved her concerns off by saying, “Don’t worry about that...he was just meditating during the scan”.  This doctor was also a meditator as well and knew Michael was a trained meditator, though he didn’t know Michael had plans to meditate during the test.

And here I return to Michael/ Fudo’s experience with his kidney failure. As we have gone along he has not felt really too bad. He is very tired and does sleep a lot. He sleeps long and deep during the night for frequently 9 to 10 hours. He also takes a long nap during the day. He has some swelling in his ankles during the day. He has some problems with a lack of coagulation in his blood that rears it’s ugly head when he experiences bloody noses. He finds going out and doing things difficult and tiring now. 

Walking is difficult because of his balance issues that are a gift from the brain stem stroke he experienced several years back...another gift of the high blood pressure. 

He has recently been experiencing breathing issues that are not related to fluid retention. This, however, appears to be more related to the adrenal insufficiency he developed after the removal of half of his pituitary gland during the neurosurgery to treat his Cushings Disease. 

So his world has shrunk down to our little apartment and quite frequently our little bedroom with his recliner chair. A small space where he sits when he is awake...kind of similar to that small meditation space in that monastery on the hill. 

But really, overall, he has not felt any other symptoms adversely. He was really starting to wonder if his kidney disease was progressing and if he had lost any function. Surely he would be feeling some more serious symptoms by now? 

So we went in to do a Basic Met panel which would tell us his GFR (the percentage of     at which the kidneys are functioning. 

The test came back and yes, he has lost a big chunk. He has gone from 14 to 9 in the last 3 months. It appears the doctors prognosis of 6 months may indeed be accurate. 

However, he still feels upbeat and at peace. He is not anxious, depressed or distressed right now. He is not really bothered by his “losses”. 

This is just his life right now. It is the reality of what life is offering him right now. 

We do think that his (and my) many years of Zen practice has born fruit. We feel that the practice has offered us some peace during this process. 

So, Reverend Fudo Michael Koppang continues his dance with death. He says that he likes to think of it as a Tango. The reasons for that will just have to be for another post...