What is your name? Where do you live? Country/City
Hermann K., Region Bodensee, 60 years old
When were you (or your relative) diagnosed with vasculitis?
In March 2004
Do you have a specifically classified form of vasculitis?
What symptoms did you have prior to your diagnosis?
For a relatively short period of time (two months) I suffered from fever, strong pains in my arms and legs, and from general fatigue. I have suffered for years (was it Morbus Wegener already?) from pains in my legs, fever, cataracts, pulmonary emphysema.
How did you cope with the news that you had such a rare disorder? What was the initial reaction on the part of family and friends?
The initial reactions to Morbus Wegener were completely superseded by reactions to a heart attack which struck me shortly after MW had been diagnosed.
Medicinically it is not yet sure whether Morbus Wegener and my heart attack are connected with each other. Maybe Morbus Wegener caused an inflammation of the heart? The shock to be suffering from Morbus Wegener came slowly, especially after all the usual measures of heart-attack-therapy did not seem to work and the side-effects of cortisone and chemotherapy set in.
Describe some of your experiences with the medical staff that has to deal with such a rare illness. What are the challenges and obstacles in getting information and the right treatment for a disease like vasculitis? What were good and positive experiences with the medical staff?
The diagnosis came very quickly. A laymen's suspicion of Wegener's (an acquaintance of mine is suffering from MW) induced me to include this possibility right from the beginning when discussing the various aspects of a diagnosis. My family-doctor felt a bit ill at ease as far as treatment was concerned, I was given cortisone and antibiotics. The clinical centre in Konstanz clarified this suspicion immediately in close cooperation with Freiburg and Bad Bramstedt, they discussed the possibility of MW right after I was admitted with a heart-attack. An additional competent treatment by a specialist for Morbus Wegener in Cologne, Dr. Perniok makes me feel comparatively at ease. Right now I think I have been very lucky to get such a quick diagnosis.
What are some of the medical substances that you have taken or are currently taking? Describe side effects to these drugs and how you handled them.
I am on Cortisone and Endoxan. Side-effects seem to be tolerable, so far: obesity, breathing-problems, an overall weak condition, thin hair, difficulties in concentrating, urge to visit the toilet quite often (also due to the antidotes to the side-effects of Endoxan), slight cramps in my hands and feet, pains in my jaw, problems with vision. But on the whole the side-effects are moderate (daily does of 150 mg Endoxan).
How much has your normal life and routine been affected by vasculitis? What have been the positive and negative effects of your illness on your family. Perspectively, how have you dealt with the challenges of caring for someone with vasculitis.
The daily routine has become more difficult It is hard to acknowledge the dependency on chemotherapy for the rest of my life. I have to find solutions for my job and for my living, all the more since I live quite far away from my wife and we can only meet at weekends. I am 80%disabled, my eventual retirement from work is presently being discussed.
What is the most difficult thing in dealing with a long term illness like vasculitis? How do you keep on fighting when things get to the worst point?
I have not yet experienced the worst point, since the acute MW lasted for only three months, being even subdued by antibiotics and cortisone (family doctor) in the later stages. Before I suffered from severe pain-attacks earlier. I don't know what the effects of life-long chemotherapy at the later stages (and this is just what I have to expect)will be
How important is having a support group in your recovery?
I don't know any support-group in the region where I live.
In what ways has the internet been a part of your understanding the disease?
The internet plays an important and helpful role in gaining information. This cannot be stressed enough, so I will put a big exclamation-mark here! True, the doctors offered information, but naturally that would have been short and verbal only. I t could not have reached the quality and density of information that my wife and I have collected via internet. Getting explanations and information on MW we do mostly via internet. We do not just gather basic medical information but mainly personal reports from other patients which doctors would not be able to give us. We find it important in judging what to expect in the future. I am a scientist and a lecturer at the university and as such I do not always like the diffuse and unproven pieces of information the internet provides. As far as vasculitis and Morbus Wegener are concerned internet has helped us leave the state of total ignorance. Even medical handbooks like Pschyrembel could not have done that to the extent the internet has done. By the way, I have discussed the information I collected on the internet with my doctors and they acknowledged that the specific information stemms from renowned specialists they could recommend. I use the internet as well to complete and enlarge the information which I get when consulting a doctor.