Finally after being told I had a couple of weeks to live and the only thing the doctor knew was that something was wrong with my pituitary gland, I was referred to an endocrinologist in April of 1991.  At the time I was thirty-three years old.  After another round of tests I was diagnosed with sarcoidosis, a mysterious autoimmune disease that can infect any organ in your body.  In my case sarcoidosis had infected my lungs, liver and lymph nodes.  However the real life-threatening organ infected was my pituitary gland. When the sarcoidosis hit my pituitary gland it would kill the affected cells therefore killing the functions those cells provided.  Of the many conditions resulting from the sarcoidosis, one was that the antidiuretic hormone (vasopressin) was not being produced on its own, causing me to now have DI.

     My treatment for the past eleven plus years is to take DDAVP nasal spray two times a day, one spray in the morning and one spray before bedtime.  The first thing I want to say about DDAVP is that you never forget to take it.  It works almost instantly and is just as noticeable when it stops.  Personally I have found inconsistencies from bottle to bottle.  There have been times when a bottle would only work for a few hours or if my nose is congested the proper amount of medication doesn’t get into my body, also causing problems.  So be aware.  In fact when I travel I make sure to take a bottle that I’ve already been using and I know is efficient along with carrying an extra bottle in a different location, such as in my luggage.  You can never be too safe with your DDAVP, as a lot of pharmacies do not keep it in stock. 

     DDAVP is an expensive medication and a lot of insurance policies will require you use a generic or else pay a pre-determined calculation that basically requires you to pay the difference in cost plus the generic co-pay, which for me ran about eighty-five dollars per month.  The problem I have is that not only is the generic less convenient because you must keep it in the refrigerator, but it is less efficient.  Instead of needing two sprays a day, with the generic I require three sprays to make it through a twenty-four hour period.  DDAVP also comes in pill form but in my specific case the pills just simply do not work, period.  I’m the only patient my endocrinologist knows of whose body doesn’t accept the pill form.  So please be aware of these situations and options because as with all medications you must determine which method is best for you, both health wise and financially.  That’s the reality of the world we now live in!

     Having DI is one of the most life altering conditions I’ve got, although by no means is it not controllable nor does it cause you to not live a fulfilling life.  It’s just that it affects everything I do.  For example, I go to the movies in the afternoon so I can sit through a complete show and whenever I go out in public finding the restroom is my first priority.  I try to get seats at events on the end of the row so that I do not have to walk over people when I need to go to the restroom.  All trips or outings are planned around my DDAVP schedule.  If I do go to a movie or another event at night, I will take an additional spray to keep me from constantly going to the restroom and I take an additional spray before any speaking engagement.  This can also be dangerous because not only does it get you off your body’s schedule, if you take too much DDAVP then your body starts to retain fluid (known as water retention), which can be just as dangerous to your health.  It can at times be a tricky situation but as long as I understand my reality it can be easily managed.  My DI is always a top consideration regarding my activities but because I understand my reality, it is easily managed, therefore allowing me to continue with the majority of activities I enjoy.

     Although rare this disease affects a lot of people and we need to find better ways of detecting it along with having more information available and easy to find.  Whenever I speak at sarcoidosis events or other health functions, each and every time I receive questions having something to do with DI.  Even in casual conversation DI gains the most attention and curiosity.  Like sarcoidosis, I feel increased awareness for DI is critical to present and future patients.  We must have standard tests ran to check for DI instead of testing someone only after many other tests have proven negative.  In my case if I had been tested earlier for either sarcoidosis or DI then I might not be in the serious health condition I’m in today.  We can’t change the past but we can make a positive difference in the future.  DI can be easily managed, if you know what it is you are managing.  Let it no longer be known as the “other” diabetes!