My name is Dave Calvi and I have had Minimal Change Nephrotic Syndrome since I was 2-1/2 years old and have been dealing with it ever since that time, as I am one of the few for whom the condition does not let go of upon adulthood. I am 33 years old now, a single father of a wonderful 9 year old boy, and am finally working toward my degree, which at this point may be a BS or MBA. I spent my entire childhood and young adult life thinking that I wouldn't see my older years. This coupled with a resentment of not being healthy led me to make many unwise decisions that effected my relationships, my credit, and my employment, not to mention my never finishing college when I was younger.

I was on Prednisone much of my youth, which caused my growth to be stunted, my face to be rounded, and the weight to surround my body for my whole childhood. I was miserable, and only sprouted like a weed when I was 17 when I was finally able to be off of the drug for long enough for my body to catch up. From that point forward I did a lot of catching up on the fun side of life. I left responsibility behind as I thought life was going to be short, and always felt that no matter what good there was in my life, it would surely come to a crashing halt because my kidneys would surely go out again. I was afraid of wasting my energy on working toward the future just to have it stripped away by something I couldn't control, so I just lived for today.

I did that for many years, and never really took care of myself. I wouldn't get back on Prednisone when I could see the symptoms of my NS coming back, until I had gained too much water. I hated that Prednisone made me fat, and rounded my face. I was so concerned with how I looked that I let my health get worse and worse, until I absolutely had to take the drug or die. An entire youth of being resentful of being unhealthy was effecting my health now. It was a vicious cycle, and one that would not change until years later. I smoked cigarettes, drank an extremely large amount of alcohol, and made poor decisions with all the relationships around me. I burned every bridge around me because I was so angry at being sick.

I married, had a son, and subsequently divorced, and found that the one thing that made me want to live and to let go of this sadness and frustration, was my son. I wanted to do the right thing for him, and so at some point just a few years ago, I hit rock bottom and decided to take the long arduous journey back to a healthy and prosperous life. I quit smoking, then drinking, took Prednisone when necessary and made sure I didn't taper off to quickly. I changed my diet, and started exercising regularly. I am just now coming off a course of Prednisone that I have had to be on for longer than I care to remember. And I'm hoping the kidneys will stay nice to me. But if they don't, I will do what I must to live, vanity out the window.

I take full responsibility for my actions, but I want all those who love someone with NS or FSGS, that those of us afflicted can have many feelings of sadness, anger, and resentment at not only the conditions themselves, but of the side effects we are forced to endure from the medications which become our only saving grace. There are particularly ill side effects for young men just hitting puberty. So try to understand your loved ones, and never give up. I felt so alone for so many years with this. It's a shame to let that continue.

Get involved in anyway you can to let these kids know that they are not alone, and that there is hope, and not to let go of that hope. It's a long road back from giving up. It's a difficult journey and would be much easier if it never has to be taken.

I wish you all good health and wonderful days ahead,

Dave Calvi

Feel free to write to me at Dave@Calvi.US anytime!