Sunday, April 21, 2013

Ken's Ordeal Part 1: The Episodes Begin

As I said in my March post, my husband, Ken, has been very ill.  Today he asked me to start writing things down.  Not sure why he wants me too...but here goes.  Maybe if I get this out of the way I can write about something else.

The story actually begins about eight years ago.  I arrived home to find Ken on the phone with a 911 operator, and shortly afterwards a police car and an ambulance arrived.  He was having strange symptoms and was afraid it was a heart attack.  He looked terrible, was gasping for breath, had pain in his chest, was a grey color, and was sweating profusely.  His father had died from a massive heart attack (his fifth) at only age 56, so Ken was understandably frightened.

I jumped in the family car and followed the ambulance, praying all the way, as it headed to Sheboygan Memorial Medical Center.  In the Emergency Room, everything seemed normal.  Ken looked and felt like his usual self and actually reported that he had been feeling fine by the time the ambulance was leaving our house.  All tests were normal, as was a follow-up stress test a couple of weeks later.  We were perplexed, as were the doctors, but we breathed a sigh of relief and went back to life as before.

Ken had another of what he later called his "episodes" about five months later.  This time he did not call for help but sat down and waited to see what would happen.  As before, the symptoms subsided not long after they began.  He did not tell me about this, but he did report it to his doctor.  Again, all tests were normal. 

Ken is a diabetic. As time passed, efforts to monitor and deal with blood sugar levels began to be frustratingly difficult if not impossible. He experienced wild swings in sugar levels, from very high to very low in a short time. He tested his blood sugar multiple times a day and attempted to follow the advice of his endocrinologist but nothing seemed to help. We did not connect the erratic blood sugars with the "episodes" --  and neither did any medical people. 

But as the years went on it became evident that something was not right.  The episodes increased to where they were occurring about once a month or so.  They usually passed harmlessly, it seemed, and they never happened when a medical professional was nearby.  All efforts on our part to explore what might precipitate these bizarre episodes led nowhere.  There seemed no common denominator and no warning signs.  Heart tests were normal, as before.  Lab tests showed nothing. 

Eventually, about a year or so ago, the episodes had increased in number and intensity and were becoming alarming.  He went to a cardiologist who ran a series of tests that were all normal. He went to a pulmonologist who suggested the shortness of breath and other symptoms might be asthma and prescribed something for that.

As the years had passed, his number of prescriptions had slowly but steadily grown as he experienced a number of seemingly unrelated symptoms, including the erratic blood sugar levels, shortness of breath, and high blood pressure. By 2012 he was taking more than 20 prescriptions. 

Life becane more difficult.  People began to notice that something was not right with Ken.  He was tired all the time.  His skin color was greyish.  He was always too warm.  He had unexplainable mood swings.  Once or twice he nearly passed out as an episode occurred.  He began to shuffle as he walked.  Inmates at the prison where he served as chaplain began to express concern.  Longtime friends knew something was wrong.   

No answers were forthcoming from his doctors.  I was alarmed, but felt helpless.  All medical tests showed nothing amiss, but Ken was fading away before my eyes.  He sadly talked about retirement, even though retirement age was several years away.   

We tried, unsuccessfully, to get him admitted somewhere so a team of doctors could expore what might be wrong.  His longtime doctor, someone who had seen Ken through some tough times and whom Ken respected, seemed to think it was all just due to being an aging, overweight, diabetic.  I knew better.  Ken, who tends to be somewhat passive about medical things, became more and more frustrated and hopeless.

And then December arrived.  I'll tell you about December in my next post. 


Mary Beth said...

thank you for writing this. one day it will help someone else.

LoieJ said...

I've been wondering what's up. Not knowing is so hard, yet not knowing is the human condition, really. We only know one TRUTH that makes a difference. I certainly pray that Ken will have more comfortable times. Yes, writing stuff down is important. Take pictures as well, even when he is so unwell.

We will be in Manti for a memorial service on 4/27. I will think of you, as always, even though we've never met, dear Cyber Friend. Maybe some day....yet we will be getting over that way less frequently since the last of the three sisters died (last Dec, but service at St. Paul's on Sat.)