Frido

Adult, Minimal Change Disease

My story started in the year 1995, when I was 37 years old. I live in the Netherlands and I had just started a new career as a free entrepreneur. For me, this was a completely different life. I was independent, autonomous, and finally my own boss! I was living the good life: assignments didn’t take long in coming, there was a lot of work available, and I had a good reputation.

Summer came and went, and with the changing of the seasons my body began to change too. In the autumn, my ankles grew very thick, and I started gaining a pound or two every day! The doctor was worried, and suspected a serious anomaly. This led him to begin research, and after a biopsy at the hospital, I was diagnosed with Minimal Change Nephrotic Syndrome.

I was started on high doses of 150 mg per day of Prednisone, which helped me briefly. However, I began to have multiple relapses, and in October 1996 the big blow struck me. After being attacked with pneumonia, my lungs became filled with fluid and I had bouts of coughing so terrible that I could not sleep in bed. The next week I had a checkup, just to do some basic blood tests and drop off urine. I almost did not go to this appointment because I felt too sick. However, we went and when we got home the phone was ringing like mad. It was the hospital, calling us non-stop. They gave me two options: I either had to come by my own means, tires screeching, or they would send the ambulance with screaming sirens. This is when it dawned on me that not all was well.

In the hospital, I was told that I was losing more than 30 grams of protein per day, had a barely detectable amount of albumin left, and my renal function was extremely low. A medicine I had been given earlier in the year for back pain was causing the closing of the capillaries in my kidneys, which had stopped working completely.

Early the next morning, I had dialysis for the first time. The doctors found that waste and potassium levels in my blood were alarmingly high. They were worried about an imminent cardiac arrest. I went into mental shock, and it was about three days before I was able to get up again. I was complete floored by the blow. Never would I have expected to become this disabled and dependent.

Dialysis was tiring, but despite this I started feeling a little better. This didn’t last long however, and after four weeks a new problem arose. Because I had been taking lots of pills throughout the year without any significant protection of my stomach, my stomach and intestines had started bleeding. Fortunately, I was already in the hospital, otherwise I would have died on the spot. I was sent immediately for a gastroscopy, and from there straight into the operating room to be cut open, repaired, stitched up, and sent back to the IC, only to find out my situation was still dreary.

My hemoglobin had dropped to below two, I had a serious leak somewhere in my body, and the doctors could not find it. I was sent back for another gastroscopy and then back to surgery. Thankfully they found the second leak, and from there I began my three-week recovery in intensive care. Meanwhile, I continued dialysis, but with a heavy heart, knowing that no matter what, my future was changed forever. I could be waiting years for a kidney.

I had a surgery to restore blood plasma, which did more than just hold down the fort. After a few days, I got a dialysis hangover! My kidneys were finally back in business because of the large quantity of fresh, clean blood plasma which had stripped out the Diclofenac! My kidneys worked again, 100 percent.

Since then I’ve had a number relapses. Prednisone does not work for me anymore, so I have been put on a combination of Prednisone with Endoxan whenever a relapse occurs. This destroys my entire defense system, and I must rebuild my system every time after ending a new treatment. I continue to get all sorts of complications that hinder the completion of the treatment, like acute gastroenteritis and thrombosis, but the periods between relapses are getting longer and longer. My last fallback was eight years ago! I am assuming that it will happen again and have come to terms with the fact that I’ll probably never be cured. But I am still alive and able to fight, and I can live with that!