My Life with NDI
By Dan Smith

I was at the DIF Web site and read the different stories from parents with young boys who were living with nephrogenic diabetes insipidus (NDI). I emailed Jody Vilschick in response to one of her stories about her young son to share about myself. She was very happy to hear from an adult male who has survived living with NDI this long. She asked me to write a life history about myself to help all you parents whose children also have NDI. I was happy to do so and this is it.

I was born a healthy 9lbs, 13oz in Duluth, MN, on January 31, 1976. I was doing fine until about my fourth month, when I started being dehydrated and having the ‘failure to thrive.’ They put me in the hospital in Duluth to see what was wrong. Although they had an idea that I had diabetes insipidus, they didn’t yet know for sure which kind. They sent me down to the University of Minnesota hospital in Minneapolis via a C-31 cargo plane. My mom had been discharged from the Army when pregnant with me, and my dad was still in the service.

In Minneapolis they tested to determine that I had NDI. I believe my mom said it was some kind of injection that they gave to determine whether I had the anti-diuretic hormone or not. Well I did, so that sent me into a coma, which they anticipated, so it was a controlled coma. So I was in the hospital for a couple months down there and then went back home to Duluth.

That’s when the fun began for my family. My dad was from North Carolina and the doctors said that living in a hot and humid climate like that would be bad for my health. So my dad gave my mom a choice of him or me.

Thankfully, and naturally for a mother, she chose to remain in Duluth to raise me with her family. So I’ve grown up with just my mother and her family. My mom never remarried, so I’m also an only child. It was quite a shock for my mom, grandmother, and great-grandmother to have a child around who couldn’t have any salt. They love their salty food and had to come up with all new ways to cook for me. They did wonderfully for me. My great-grandmother, who I shall refer to as Granny from now on (since that’s what I call her), was a huge salt-shaker person. She however, put all of her effort into coming up with foods that I could eat.

Granny first started making something akin to corn chowder. I called it “torn hoop,” and it was pretty much frozen corn with milk and pepper in it. They couldn’t stand the taste of it, but my little hungry mouth ate it up like crazy. I, of course, had the problem of not wanting to eat and to just drink all the water I could. They used every trick possible to get me to eat. This included begging, pleading, bribing, and even forcing me to eat. They did this by withholding water until I would eat at least a couple bites. It may not have been the best, and I’m sure my mom didn’t like it, but grandmothers get what they want by any means necessary. My other favorite thing to eat was Spanish rice. It was pretty much ground beef with tomatoes, pepper, chili powder, and rice. I think they left a little of the grease in to add some flavor though. I still remember how much I loved that stuff. So it went like that for my early years. Even my babysitter got pretty good at cooking with a lot less salt for me.

Another thing I saw that I wanted to reply to was parents being worried because the doctors told them their child could suffer mental retardation. I don’t remember my mother telling me this, but she says they did tell her that when I was diagnosed. I sure wish they would tell people there is a low chance of mental retardation instead of it being possible. I’m sure it is possible, but it sure must be hard to hear when you just get one diagnosis that is not easy to live with.

Well, my story goes like this. My babysitter taught me to read by the time I was 3 and1/2 years old. I was in accelerated programs, even in kindergarten, and a gifted program from 3^rd through 6^th grades. I was and still am an excellent speller. I was reading at a 6^th grade level in kindergarten and a 12^th grade level by 4^th grade. I was a school champion speller in 5^th and 6^th grade and did pretty well in my whole city. Now it may seem like I’m bragging, which I guess I am a little, but I thought people should know that this disease doesn’t affect your intellect at all. I did pretty well through high school but didn’t do so well in college. I scored a pretty good score on the ACT’s and took an IQ test, which showed an IQ of 136. On a side note I’ll say that our country’s school system does not help those who have a high intellect because it drags the smart children back to the normal level and makes them bored easily.

It was hard growing up with the dehydration factor of NDI. It was easy to get water, but not so easy to keep it in. People may think of Duluth as a cold place, but that’s only in the winter. In the summer it gets up to the 80s and 90s commonly, with very high humidity thanks to Lake Superior. I usually ended up in the hospital at least once a year until I was 15 years old. Most of the time it happened because of the humidity. I never was able to play any outdoor sports when I was young because of it. I’m sure I could have tried harder, but my family used its good protection to sometimes protect me from what could have been fun. So make sure to not protect your children too much. At least let them try and do some indoor sports. Winter sports are a great idea as well. I love snowboarding and snowmobiling the best, and you never have to worry about dehydrating because of the heat.

I also have had to deal with medications my whole life. They started me out on hydroclorothyazide (HCTZ) when I was a baby and then tried some other diuretic to help when I was around 6 years old. That didn’t work, so they took me off that and put me on Midamor (amiloride). That worked right away and I’ve been taking it ever since. I take both of those together with a potassium supplement.

Unfortunately I have also been genetically blessed with a multitude of allergies. This includes animals, dust, trees, grasses, flowers, and a whole bunch of different foods. It was very easy when I was little to give me a banana for potassium, but now I’m allergic to them and raisins. I’m also taking Accupril for my blood pressure. I’m not sure if that is completely because of the NDI, or my not-so-low-salt diet that comes from working. It also could come from the stress of being an adult. Kids, don’t grow up, it’s not as fun being an adult as being a child.

There was never a time when I tried to not take my medications. Of course I’ve forgotten occasionally, and I can tell when that happens. I definitely do not like the feeling of being off my medication and being even more thirsty. You just drink more water and don’t get rid of it so you get a stomachache from too much water.

Another thing is that I remember my family trying to make me eat my whole childhood. Well that kind of backfired, as I am now a very hearty overeater and a wee bit overweight. Not so fat mind you, but definitely not skinny. Of course when I do lose weight I can’t do anything about my stomach: four gallons of water a day for over 20 years kind of stretches it out a lot. So I’ve been thin, and totally muscular in my arms, chest, and legs. Then I have this nice belly sticking out from my water.

And yes I did say four gallons. That’s what your children have to look forward to. That and having people say, “Why do you drink so much water?” And of course the old, “diabetes, huh? So what do you for your sugars?” If you think it’s bad hearing it as a parent, try hearing it for your whole life as the person with NDI. I’ve never wanted to smack people upside the head for any reason more than that. And it’s even worse coming from a doctor or other health care professional. That’s definitely something that I wish doctors would be trained in more. Quit assuming everything is diabetes mellitus-related and start listening when patients talk to them.

Now you may get the idea that I resent my NDI from some of this. But I don’t. Of course I wish I didn’t have it, but I think I’d rather have NDI than all my allergies or any of the emotionally disorders that I’ve come across. I have a family history of mental illness, which I’ve gotten to experience myself. It seems to be very hard to treat depression and related conditions in someone who gets dehydrated easily. My first experience was with Zoloft. That dried my mouth up so bad I was ready to go even more crazy. A dry mouth is not a good thing when you’re thirsty all the time. It’s very easy to become unstable when your whole life revolves around water and you can’t get any. I’ve been on many trips where I couldn’t get water and people became very concerned because I became a whole different person. To me, and I’m sure anybody with NDI, water is a drug. It’s necessary for us, but we become so dependent on it that we get very irrational and moody if we can’t get it. So always try and help your child have enough water.          

That’s my story, and I hope it helps everyone a bit. My biggest challenges now are just watching my salt, since fast food is so cheap and easy to get, and getting good water when out in public. People wonder why I drag gallons of water to work and everywhere I go. They just don’t understand, and probably never will.

So be good to your kids and protect them, but also make sure to push them sometimes. Just never push them to not drink water. Pushing them to see how long they can hold before going the bathroom is kind of funny though. I’ve never stayed mad at people for that. Good luck with your children and your lives.