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MyStory
Archive 2004 - 7
Q: How did you find out that you had a primary immune deficiency? My story reminds me of the line from one of Tennessee Williams's plays: "I have always depended on the kindness of strangers." Like many other patients with a history of infections, I had met many medical professionals, but one was truly refreshing for his insightfulness and sensitivity. He was a physician's assistant, working his turn one morning in the urgent care unit. After seeing me two or three times and listening to my medical history, he remarked, "There might be something wrong with your immune system." His observation—which showed his capacity both to listen and to ask questions—has resonated with me ever since. It gave me the motivation to scout the Internet for something—anything—that might lead me to understand the possible source of my symptoms—seemingly ever-present and worsening. In a nutshell, I had spent a great part of my life wending my way through the health-care system, and I was exhausted—in part from recurrent sinus and ear infections, sinus surgery, and the mid-life onset of asthma, and in part from my sense that virtually nobody with a medical degree of any sort was willing to understand or believe that I felt as if I was unable to resist infections in the same way that most people do. That morning, I came home with a prescription for another round of antibiotics and the words "immune system" dominating my thoughts. I went straight for my computer, and my initial searches on the Internet were fruitful. I found the "Ten Warning Signs of Primary Immune Deficiency." I was ecstatic, yet skeptical. I had already seen a chain of specialists, and I had taken my son to many specialists for what appeared to be juvenile arthritis, as well as for type-1 diabetes, and nobody had ever mentioned anything like "primary immune deficiency" as a possible source of inquiry. After finding more information on the Internet, I called the Jeffrey Modell Foundation (JMF), and then the Rainbow Babies and Children's Hospital in Cleveland, Ohio (which was the closest facility to Madison on JMF's list at the time). I was ready to travel out of state if that's what it would take to get an answer to my medical problems. I printed out enough information to fill a big-city telephone book, and I talked with my primary-care provider, a nurse practitioner. She listened. But it seemed to me that she remained skeptical to my claim of my possible condition, as well as to the topic itself and to the treatments. To her credit, she did grant me my request to visit an immunologist in Madison. Fortunately, through a friend of mine—whose daughter had worked as a nurse in critical care and other specialties in the city—I got a recommendation for a specialist at the University of Wisconsin Hospital and Clinics. What luck! I'm glad I had gathered the courage to talk about my health history and to ask for some direction in selecting a physician. What a blessing! In December 1999, I met my immunologist, who is a researcher and clinician. And now I have a diagnosis—after a lifetime of searching for the underlying cause of my symptoms. It wasn't until my mid-40s that I could tell anybody what I have—a primary immune deficiency (PI) called "selective antipolysaccharide antibody deficiency syndrome." And it wasn't until then that I was treated properly with antibiotics to prevent infections. And it all happened, I think, because of the kindness of a stranger—a medical professional I had met just a few times just because I landed in urgent care and just because he took the time to listen and to share. I know there must be other people out there like me who are still waiting for their "stranger"—people who are sick with respiratory and related conditions, but who are not that sick; who know the revolving door of doctors' offices; who try to explain how they feel, but who too often get a lecture on the importance of vitamins and other preventive medicine, with a heavy dose of "you'd better take better care of yourself and cut out the stress"; and who most of the time suffer silently until somebody special comes along. Q: How often are you (or your child) infused? I am eligible for intravenous immune globulin (IVIG), but so far a daily dose of two antibiotics is preventing sinus and ear infections, and my asthma symptoms have become sporadic, rather than chronic. After my hard-won diagnosis, I had my son tested for primary immune deficiency. He doesn't have the disease! However, he does take daily insulin injections for his type-1 diabetes. We both know the importance of good nutrition and exercise, of getting a good night's sleep, and of enjoying each day for all of its glories. I think that I have been able to stay as healthy as I am in part because of the daily antibiotic, but also because of good lifestyle choices and a positive attitude. Someday I might have to depend on IVIG, and I am trying to learn more about the treatment. Q: Describe your experience with your immunologist? I am fortunate to have a well-educated, funny, and compassionate doctor, who helps not only PI patients, but many other high-risk groups, such as those with lupus and severe forms of arthritis. As a researcher and clinician at a major Midwest medical facility, he has probably seen every immune deficiency possible. Q: Have any organizations or support groups helped you cope with this chronic disease? I am proud to say that after my diagnosis of PI, I have become a volunteer peer contact for the Immune Deficiency Foundation (IDF). I have attended a national training session as part of my commitment to the organization, and I have had the tremendous opportunity to travel to Washington, D.C., to advocate on behalf of the IDF and the National Institutes of Health for increased funding for research on primary immune deficiency diseases. My job here in Wisconsin as a peer contact is to provide information and support to other PI patients or parents who have children with PI. I think it always helps to give something of yourself, and in return the work makes you feel better in your head and in your heart. And I have made many great friends and acquaintances in the process. Q: Can you suggest any Web sites where you have found helpful information about primary immune deficiencies and the therapies used to treat them? Oh, there are many good Web sites, including those for the IDF, the National Institutes of Health and the JMF, just to name a few. I would encourage patients and parents to explore the Internet freely, but to rely on reputable sites. In particular, patient forums (or chat rooms) are a great way to feel part of a community of interested and concerned people—just like you and me. But you shouldn't rely on them for medical advice—that's what your doctor is for. Q: What's the most difficult part about living with a primary immune deficiency (or caring for a child who does)? Before I had a diagnosis and a long-term treatment, the most difficult part of daily living was the recurrent infections and subsequent tissue damage, particularly in the lungs. Now, I feel so much better, and it is easier to take care of myself and my son. Perhaps the most difficult aspect remains the lack of understanding of the disease itself on the part of many medical professionals, as well as the diagnostic tests and treatments. This has been my experience. Q: What advice would you give a person newly diagnosed with a primary immune deficiency (or the parent of one)? What advice would you give to that person's family? Love yourself and your family, keep your sense of humor, and get a hobby if you don't already have one. Singing in a choir has been my passion. Laughing can be a real boost, too. So my advice is: Find something that you like and that helps to keep you healthy, too. Q: Describe your experience with your insurance company? For me, insurance coverage has not been an issue. I have been fortunate in this regard. Q: Is there any "silver lining" to having this condition? Of course! Now that I am a peer contact for the IDF, I have met so many wonderful people with similar histories and experiences. Adversity can help to build strong characters, and I have met many interesting and strong characters through IDF. I often think that it is much more difficult emotionally to have a child with a disease than to have a disease yourself—at least that has been my experience. And when I say "difficult" I mean learning to deal with the flood of confusing emotions that can take over and the feelings of helplessness when you can't just fix everything for your little girl or boy. I would say that having a chronic illness has made my son of strong character, too, and he has learned at a rather young age so much about the body and how best to care for it. Of course, though, I pray for a cure to PI and type-1 diabetes. Q: What improvements in your IVIG would you like to see from processors of IVIG therapies? At this point, I am still learning so much. I know that there is a demand for self-administered, at-home infusions. |
Note:
This interview features a person with a primary immune deficiency.
It was not written by a healthcare professional and is not meant
to replace the expert care of a qualified physician. Please consult
your physician with any questions you might have about your health.
