In good hands in Denmark, as well
by Margit Jessen
In 1987 I was diagnosed with "Polyarteriitis Nodosa, Churg-Strauss-Syndrome". I live in Denmark and was 44 at that time. In the newspaper I had read about the annual information-congress in Bad Bramstedt and I was very much interested in how this disease is being treated in Germany. A long time of suffering from pains in the tissue, fatigue, loss of weight, loss of appetite, sleeplessness und problems with my lungs had preceeded (I suffer from asthma). I had consulted doctor after doctor. In the end my husband had to accompany me because I was not able to do anything on my own anymore.
After a total breakdown my situation worsened
After I had taken one of the painkillers prescribed I had a total breakdwon and was finally sent to hospital to the lung-department( klingt für mich so, als wenn man da Lungen kaufen könnte....) An x-ray showed that my heart had been expanding consederably during the last few months. Additionally I had developed ulcers on my knees and elbows which resembled smallpox. The family-doctor had to be consulted. Photos were taken, biospies carried through while my situation worsened. Finally some kind of inflammation of the connective tisues was diagnosed and I was transferred to a clinic for rheumatology where one of the doctors had specialized on this illness. In the clinic further examinations were carried through. Weeks went by with examinations, biopsies, etc. until I , 162 cms, weighed only 46 kilogramms and could hardly walk and only sleep with the help of strong tranquillizers. I was really down.
As soon as the final diagnosis had been found the doctors acted immediately
I was treated with Endoxan intravenously and a high dosis of Cortison. I felt relief presently. A few weeks later I was dismissed from hospital although I suffered from a certain amount of confusion due to the Cortison. Later on I was even able to work in my job as manageress of a kindergarden until I got heart-problems. My doctor advised me to give up work and so I had to adjust myself to a new life. Due to the heart-problems I have to go to hospital often and often all of a sudden. I have had two cardiac attacks and have had a heart pacemaker implanted. Since the heart-medication had only slight effects I have tried out all suitable kinds of medications several times. Betablockers do not agree with me. I have had five cardioversions to get my heart back into its normal or rather into an acceptable rhythm, but the results differed from relief for some hours to relief for several weeks. Doctors told me there was nothing else they could do for me. Rheumatologists together with heart-specialists check me regularly, the blood dilution is checked regularly as well.
You would hardly notice my illness looking at me
I have severe problems with my cortisone-damaged skin and have to wrap myself literally into cotton wool. The other medication agrees with me relatively well. I eat a normal (healthy) diet and you would hardly notice my illness looking at me (except for little puffy cheeks). My husband is a strong support, he does all the difficult tasks for me regarding household and gardening. I have a few hobbies which I can practise when I am well. I was very much touched by the report (at the Patients's Information Congress) of a caregiver on her husband, because we had had the same experience.
I am extremely restricted as far as travelling is concerned and would like to stay in Denmark or Germany, because my illness is too complex for me to express things to doctors in a foreign language. I have happy memories though of all the places we have been to before my illness. I am a positive thinking person and think that I am still leading a good life. The Bad Bramstedt Information Congress has confirmed that I am treated well in Denmark. I have noticed that I receive the same medication which is prescribed in Germany, too, which is very comforting. My rheumatologist is very much interested in my illness and has met Prof. Dr. med. Gross in Luebeck. I think I am in good hands in Denmark.