MARIAN'S STORY

My name is Marian and I am 47 years. I live in the Netherlands

My story of blackouts, started at the age of 22 years.

In the summer of 1983, lymph node cancer, Hodgkin disease was diagnosed. At the same time I experienced some strange symptoms. I couldn’t pass urine easily, I had bouts of diarrhea and found it hard to read. In addition I couldn’t perspire and had a very dry mouth. Further more I had blackouts, all the time. Even if I lifted my head up from a lying position, I lost consciousness. On the moment I was lying down again I recovered consciousness. Standing, sitting, walking, was not possible anymore. The complaints were a mystery for the doctor in the regional hospital. So my internist send me to a specialist in Hodgkin disease and from there I visited dr. Wieling and dr. van Lieshout both working at the AMC, Academic Medical Center of the University of Amsterdam. They found the cause and later also the answer of my complaints.

The cause was: acute pandy autonomia, a generalized disorder of the autonomic nervous system with invalidating orthostatic hypotension. Simple, my blood pressure is dropping to a very low level upon arising, with values so low that the brain doesn’t get enough oxygen. If my body is at rest (lie down position and later also sitting) the blood pressure is normal. My body sends me signals when the blood pressure is dropping, before there is a blackout. So I have learned to listen to my body. Warning signals are for example: pain in the neck, ringing in the ears, yawn, dizziness, light-headedness, visual disturbances.

Before addressing the problem of the blackouts I received treatment for the Hodgkin disease from August 83 till June 84. I had chemotherapy, 6 x M.O.P.P., and 1 month radiation. In the beginning of this treatment period I was severely disabled, totally dependant and attached to the bed. Ever since I was 18 years I lived on my own as a student, so it was very hard to deal with my situation. It did not fit with my character so I tried to find ways to become more independent. After a while I crawled around in the house but I had to held my head bended to the floor. Probably as the result of the treatment there where positive changes, a natural recovery. For example my bladder worked again. I went on with experimenting with my possibilities. After a while I sat squatted on a chair or in a wheelchair. I could stand for a moment when standing with the head and upper body bent forwards. I even walked for a short distance in a stooped position behind someone while I was holding his belt. With this freedom and possibilities I lived again on my own with off course the help of family and friends. An important observation was made when I was in a swimming pool. If the water was on the level off my belly button I could walk unlimited. The treatment of the Hodgkin disease was successful and I went back to dr. Wieling and dr. van Lieshout. They found the final answer. The doctors measured that by the maneuvers I had discovered the orthostatic tolerance improved. During my stay at the hospital I received medication ( florinef)and a lot off fluid and salt was added to my diet. In addition I slept with my head 11,81 inch higher than my feet.(like on a slide) The final result was that I left the hospital walking. The wheelchair was not necessary anymore. I still cannot describe how thankful I am to both doctors.

Now it was important to get my body in a good shape and to go on with my life. I had to face a lot of new obstacles. For example: problems of low blood pressure during cycling, especially when there was wind, a little hill, or when I had to get off the bike. Also standing in a row was difficult. How to sleep on a slide during a vacation or a camping trip was a challenge. We always found a answer. Important physical counter maneuvers I found helpful are, crossing legs, contracting the skeletal muscles of your legs/belly/buttock, during the cycling you put your leg on the cycle bar from time to time, leaning against the wall with your back and put one leg bended against that wall, more than enough use of salt and liquid, bending forward, squatting, I often stand a little bit with my face down. Further you will never see me running or hurrying. All these tricks I use them now without thinking and most off the time even before my body warns me. Since 83 I never passed away again . With my condition you can imagine that I had to make choices in my activities. Therefore I concentrated me on work, my partner and later on our children. My personal social life stood on a very low level. I went to bed tired and stood up tired. Nevertheless I went with my partner to West Africa, Niger, for well over tree years. After that period, we came back in ’92, we got three children. During the pregnancy I felt extremely well, I haven’t used any medication, no moment off dizziness, I wasn’t tired at all. My partner and I always shared the housekeeping, raising and taking care off the children. Because off my limitation he did and still does more, especially as our youngest daughter is handicapped. His attitude in this makes it for me possible to live my life as I did until now. Children placed me again for new situations where I had to find a solution. For example I changed the diapers while they were lying on the floor or washed them always with the bath placed on the floor.

Since July 2006 I am not working anymore. All the maneuvers I use weren’t effective anymore. It felt for me to be back in the situation of ’83/84. To be tired was normal but now I felt exhausted. I also experienced chest pain during cycling and myocardial ischemia was diagnosed. The heart muscle is protesting as the result of a poor blood circulation. But also my age is playing a greater part in what my body is still willing to do. Working as I used to do is not possible anymore and so I have to adjust my life again. But I am convinced that I will find a new challenge because of the fact that I always thought in possibilities and never in limitations.

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