Jon Johnson with CDI
By Jon Johnson

“Thanks to God and Modern Medicine”

My name is Jon and I live in Vancouver, Canada, with my wife and three children. I am 44 years old. My story is that I was diagnosed with partial central (pituitary) diabetes insipidus (CDI) late in life. But thanks to God and modern medicine, I have learned to live with it and even to be in control most of the time without taking much medicine. Looking back to my childhood, I can see that my condition was sometimes very bad due to total ignorance.

At age 7, I was playing alone in the living room and plugged in a lamp when the power outlet kind of exploded into my hands and I got a massive electrical shock that kept me stuck to the wall till my dad rushed in and knocked me loose, and put out the fire that was spreading up the curtains. I have often thought that this was the beginning of having periodic problems with urinating. Shortly there after I started wetting my bed for two to three months, then the problem went away.

As I was entering the teenage years, I noticed that I went to the bathroom more frequently than others. But the biggest symptom of DI was that any kind of sport would give me a headache, like you get when you are really dehydrated, but my thirst would not give me any indication of the lack of water. So unfortunately, for me, sport and headache went together and that kept me away from normal participation. (Knowledge gives you power. Now I go to the gym often, but keep drinking constantly even though I don’t feel thirsty, and so beat the headache.)

My condition got worse when I was 31. I moved to Iceland to a much colder climate and started drinking coffee a lot, and without me noticing it too much, I was going to the bathroom—sometimes every 20 to 30 minutes, and four times during the night. I am 5’6”, and my weight had stayed unchanged at 120 pounds from the age of 16. I remember during one school reunion, when I was 37, all my schoolmates sat in a circle and started talking about their ever-increasing weight. The moment of truth came and we all had to tell our weight, and when it was my turn, after they had all thrown in their big numbers, I said I was still 120 pounds. There was a silence until one guy said, “That is not normal, Jon!” That really stuck with me for the next year or two, and got me thinking. I had always accepted that I was a skinny kind of a guy, but I started looking at myself with a critical eye now, and asking questions.

Am I normal or not? At the age of 37 I still have the slender body of a teenager—I must have discovered the secret of eternal youth! I hardly ever sweat, which is a plus. I cannot play sports without getting a headache, which is a minus. I urinate so much that I must be manufacturing water out of thin air! And in the last few years, I’ve come to know where every public washroom is situated, and my intuition works automatically to calculate where washrooms are hidden in every office buildings, so I do not have to ask directions. Normal? Probably not!

So I finally went to my doctor, who diagnosed me on the spot with partial DI. He sent me to a university hospital that did all the blood tests while I stayed there for 24 hours without food or drink, plus they did a MRI scan of the brain to make sure I didn’t have any tumors. The hospital confirmed his diagnosis.

The doctor started me on Desmopressine, which I really grew to like. I could now literally feel how dehydrated I had become, once the water started staying in the body longer than an hour or two. I put on weight right away, and I felt fuller and more complete. I could now go into the gym and even sweat and work out and not get a headache.

I took Desmopressine for about 6 years and got my weight up to145 pounds. The first few years on Desmopressine I could never run out of it, because I would loose 4-6 pounds of weight in 24 hours, and that dehydrated feeling would creep in. But now for the last year, something has changed and I feel I can go without Desmopressine almost totally, and not lose weight. I have cut down on way-too-much coffee drinking, and I am trying tea instead ,and if I do workout, I make a point of having enough water with me.

I prefer not having to depend so heavily on medication, and I thank God for this partial healing, and all the knowledge I have gained along the way of how to be more in control of my condition.

Looking back my worst moment was a funny one and happened when I was 19.

A friend of mine had a four-seater airplane; we took these two really nice looking girls for an hour flight to the western tip of Iceland. To be generous, each of us had two Coke bottles. I drank them right away, and as we were taking off I suddenly realized what I was in for: a whole hour of torture, trying to keep myself dry and to keep a frozen smile at the same time. When we landed, I could hardly walk from the airplane to the bathroom, so intense had the bladder control become.

Things that help me keep my waterbalance:

Things that do make me lose water.

I thank you all at DIF for being a support for people like me. God bless you.