I want to start this blog because of my confrontation with Microscopic Polyangiitis and resulting kidney failure.
My name is Henk and I am living in Amsterdam in the Netherlands for more than 30 years.
November 12th, 2012 I went to my doctor because I was not feeling at all well. I thought I had a persistent flue and an itchy feeling all over my body. My doctor immediately sent me to the hospital to have my blood checked. She judged by my complexion that something serious was the matter with me. At that time no one knew what was actually wrong with me.
I went to the hospital, the OLVG (Onze Lieve Vrouwe Gasthuis) around the corner from my house. There they took a few samples of blood from me and I went home afterwards. Not long after arriving home my doctor called me to come visit her immediately. When I talked with her she told me to go to the hospital, to the Emergency Department of the OLVG. Well I went to the hospital and I never came out of hospital for more than a month.
At that moment I understood that something serious was the matter with me. But no one could say exactly what was going on with me. But what was already evident was that my kidneys failed to work normally, waste materials, such as sodium and potassium, were not being broken down. And these waste materials were poisoning my blood and sub sequentially my body. I started to get an itch all over my back and chest. During my stay at the OLVG tests were being performed to find what was going on with me. With every other test they could exclude what was not the matter. It was already starting to be evident that I was stricken with Microscopic Polyangiitis. But only a kidney biopsy could give one hundred percent evidence. But this was not possible at the OLVG.
After some time staying at the hospital OLVG I started to cough up blood. Now things became really serious! I was immediately brought to the intensive care unit at the OLVG. They had difficulty getting me anesthetized. I started to panic whereupon they gave me an injection. I was completely out.
Now let me tell you about my circle of friends. The first days at the OLVG I immediately realized that things had to be arranged and I did ask one of my best friends because he was the one nearest to where I live and nearest to the hospital, to arrange my clothes, my mail, etc. I had myself already called my younger brother to tell him that I was in hospital and my friend also kept my brother informed. He also got into contact with my other friends and inform them of the situation. Immediately they arranged a visits schedule, I was never on my own during visiting hours at the hospital. That day I first went to my doctor I also called my employer to call in sick. My friend also got into contact with my manager to keep him informed. My circle of friends became an enormous source of support during those days. Thanks to my friends and their friendship I got myself back to health.
Back to my stay at the intensive care unit (i.c.u.). I was under sedation and things went from bad to worse. My friends told me later that I nearly had died. Things were that serious that my brother was called and asked to come to the hospital. My brother lives in the most southwest region of the Netherlands, some 250 km. from my home in Amsterdam and from the hospital. While I was out my brother and friends visited me at the intensive care unit. I do not remember but they told me I had reacted to their presence. At that moment I moved from i.c.u. of the OLVG into the Mobile Intensive Care Unit (the MICU) to be transported to the i.c.u. of the Academisch Medisch Centrum (AMC) in Amsterdam South East. There I was treated further. I woke up in a hospital bed at the Internal Medicine ward of the AMC.
Every other day I received haemo-dialysis and/or plasma pheresis to immediately clean and purefy my blood from the wastes that had been building up. A few days later I got a kidney biopsy. From the kidney biopsy came the final evidence that I had been suffering from an auto-immune disease Microscopic Polyangiitis.
(Because of judicial reasons this part of the story has been deleted)
My kidneys nearly stopped working and while I was in hospital did work for only 5%.
After 7 sessions of plasma pheresis and regular dialysis and physio therapy I was healthy enough to go home.
Now since that time I am having dialysis three times per week, 4 hours per session.
Now that I am home my life has changed completely. I have to learn to live with the plight of my disease and the regular dialysis. But I also got stricken with diarrhoea.
I started to pick up my condition, to try and walk up three flights of stairs, to ride my bike again and do those steep bridges across the canals of Amsterdam. Slowly my condition increased only to be interrupted by another setback, early in April 2013 I ended up in the hospital again with a pulmonary embolism. I was not feeling too well, coughing was quite painful, and went to the Emergency Department at the OLVG, I was immediately redirected to the Emergency Department at the AMC, this was because I had been treated at the AMC earlier. I ended up in a bed at the AMC again being cured from a pulmonary embolism. To cure the embolism I was prescribed a blood thinner for about six months. A week later I went home again.
Ever since I left the hospital in April 2013 my health increased, the diarrhoea stopped. Slowly I felt my health getting better.
I can do 3 flights of stairs with ease, I can do on my bicycle the bridges across the canals of Amsterdam with ease.
May 18th, 2013 together with my brother and my friends I had a party for my brother, my sister-in-law and my friends to celebrate my return to health.