Patient Profiles
Living with CVID
Gabriele Fehr, is a 45-year old woman with common variable immunodeficiency (CVID) syndrome who lives and works in Berlin, Germany. Here's her story:
In early 2004, I was diagnosed with CVID at the internationally recognized Charité hospital in Berlin. Prior to that, my medical insurance company and my health were under great strain due to misdiagnosed symptoms. But, let's start at the beginning.
As a child, I was considerably more susceptible to infection than my sister. I was always quite delicate and small. I remember, for example, that I missed most of my sixth year of school because of illness and spending time on medical treatment. My first serious illness came when I was 17 years old. I was diagnosed with pleurisy and a respiratory infection with pleural contusion, which led to eight weeks of hospitalization.
After my son was born in 1983 (when I was 21), I was very ill almost once every year, often with long periods of hospitalization for such reasons as pneumonia, bladder infections, uterine and ovarian infections, pyelonephritis, as well as two miscarriages. I took antibiotics at least three to four times a year. Most of the time, physicians, friends and family advised me to take better care of myself. Most of them were simply at a loss and kept asking me "what is going on with you?" In my mid-30s rheumatic complaints were added to my problems. At that time, I was living and working near Koblenz, Germany, where I visited a rheumatologist. He made the diagnosis of lupus erythematodes. I received high doses of cortisone and Quensyl, a medication, which eases symptoms of malaria. At this time, my complaints were less vocal. But the typical side effects started as well—weight gain, water retention, osteoporosis, limitation of my range of vision, and depression, to mention but a few.
After three years, I visited a Lupus self-help group and it soon became clear to me that my symptoms were different than those of the others. My physician considered them typical of this disease and there were no further studies, and I continued to battle with all kinds of infections.
After another two years, I moved to Berlin for professional reasons. Immediately, many of the same rheumatic symptoms started up again and after a visit to the department of rheumatology at Charité hospital it became clear relatively quickly that I was not suffering from lupus. With the aid of a 14-day admission and many studies and treatments in the outpatient clinic of rheumatology, the diagnosis of CVID had been confirmed, along with other diseases such as Sicca syndrome, chronic exhaustion syndrome, spondylosis deformans of the thoracic spine, arthritis and primary hypercholesterolemia. Having learned from all the errors I previously experienced, I then immediately contacted the German Self-Help Organization for Congenital Immunodeficiency (DSAI) and obtained a great deal of information about my disease from them.
At first, my therapy was as an in-patient, intravenous procedure at Charité hospital every four weeks. This intravenous administration of medication was then continued by an oncologist. I really had a hard time even obtaining my treatments at the beginning. For reasons of cost, as the doctor himself admitted, I was being given only very minimal doses at intervals that were much too far apart.
Via the DSAI, I then became aware of a subcutaneous therapy. After long discussions and interviews, my physician decided to use subcutaneous therapy at his practice. But here, too, I received extremely small doses at far too great an interval. I did not receive the medication to take home with me and after weeks without therapy, I was battling serious infections once again. But with the help of the DSAI, I then found a physician who had been prescribing an IVIG therapy for me regularly and in the right doses up to today.
I now carry out subcutaneous therapy at home three times a week. Of course there are problems with my abdomen, and it also sometimes irritates me considerably to always have this obligation in the evening after work. On the basis of the many infections I had in the past, these days I suffer from many chronic conditions, for example, chronic enteritis, rachitis, sinusitis, and abdominal and bladder infections. These may have been avoidable had the disease been diagnosed earlier.
I also have to take antibiotics frequently, and these treatments are also accompanied with a certain amount of side effects. But nonetheless, I am very thankful because my immunoglobulin G value is currently usually a bit over 700. I feel considerably better, and even the infections remain within certain limits.
My rheumatic complaints have been increasing again somewhat recently and I do not tolerate the antirheumatic medications well at all. Bowel problems and hypertension are some of the consequences. But I obtained a tip from another patient who suggested that I try enzyme treatment to control the pain and swelling. And a slight improvement has already commenced.
The infections, bowel problems, joint pain, therapy and doctors' visits put a burden on my everyday life and my professional life and it is not always easy to be able to deal with everything and complete my daily tasks. When a person is also faced with suspicions of abdominal carcinoma it is indeed rather difficult to remain cool and collected. Thank God it was only a small tumor, but it did wipe the smile off my face for awhile. At the moment, I am worrying because it is suspected that my son might also have CVID. And so a person is happy about every positive thing and all help that one encounters.
Since the end of last year, I have been given a certificate of disability and therefore receive a few benefits at work. Of course I am sick more often than my colleagues, but fortunately I have a job where consideration is taken and understanding is demonstrated. Otherwise I would certainly have been terminated long ago on the basis of an illness, without a positive prognosis.
Unlike the experiences of some of my fellow patients, my health insurer has never caused any trouble when it came to the prescription of pumps and medications. This is another thing for which I am very thankful. I met my husband two years ago and moved in with him at the beginning of this year, and that is another reason why things are going very well for me these days. I would like to thank everyone who has always been there for me. There have been some difficulties along the way, but things are improving.