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MyStoryArchive 2004 - 3
Q: How did you find out that you had a primary immune deficiency? Our youngest child was born in 1976. She was six weeks early. She was sick immediately and stayed sick for months, when our family doctor told us something else was wrong. He sent us to an immunologist and he diagnosed her with hypogammaglobulinemia, which is now common variable immune deficiency. I was diagnosed with common variable in 1994. I developed pneumococcal pneumonia in 1992 after exposure to a patient. I was an emergency nurse. I ended up on a ventilator due to respiratory failure. After that I had 18 hospitalizations that all started in the [intensive care unit]. I went from doctor to doctor. I went with my daughter for her check-up with her immunologist and asked him if he saw adults as well. He was a pediatric specialist. He reviewed my charts and told me that I had the same problem as my daughter. All of the test results were there, but no one had recognized it. I have developed low IgA and have antibodies to it. When the IVIG shortage occurred, the hospital changed my brand of gamma and I slowly became as ill as I was before. During a retreat with the Immune Deficiency Foundation, we found out that I was getting too much IgA in the brand I was receiving. We immediately changed back to [my original brand] and I am doing great. Our oldest daughter was diagnosed yesterday with it. However, we caught it early and the outlook is great. I will never take any other product than [my current brand]. I work full-time as a nurse case manager, and I only have minor restrictions on activities due to damaged lungs. Q: How often are you (or your child) infused? I receive 25 grams every two weeks at home. My husband starts my IV and I sleep while it infuses. It must infuse slowly over eight hours; therefore, we start it and sleep while it infuses. I pull the IV the next morning and go on with my daily routine. Q: Describe your experience with your immunologist? We have been with the same immunologist for 26 years. … We have a very good working relationship that is more of a co-op relationship. He listens to me and we discuss all matters until we are both satisfied. Q: Have any organizations or support groups helped you cope with this chronic disease? The Immune Deficiency Foundation is great. Q: Can you suggest any Web sites where you have found helpful information about primary immune deficiencies and the therapies used to treat them? National Institutes of Health and Duke University Medical Center. Q: What's the most difficult part about living with a primary immune deficiency (or caring for a child who does)? I had to give up bedside nursing and I loved it. I try to remember my bad experiences in the medical world trying to get treated with a rare disease and pass that on. 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? Do not let it rule your life. Find your limits and work around them. My daughter danced, is a cheerleader, plays tennis, jazz, gymnastics, and anything else she wants to do. We paid attention to the weather, cold and flu season, and good nutrition and good rest. If you give in to it, you will be miserable and depressed. You can win with a good team approach: you, family, doctor, and friends. Q: Describe your experience with your insurance company? I have gone through three HMOs during my time. We had an indemnity plan with our daughter. They were great. Coverage 100% through [the home care company]. The HMOs have put me through it. They had me go to the hospital for infusions. I spent close to 12 to 14 hours there, between waiting on the medicine to come up and then the infusion. I caught every bug in the hospital. They also changed my brand which made me sicker. They now leave me alone at home and give me the brand that I have to have. It has been one year since I was in the hospital. Yea! Q: Is there any "silver lining" to having this condition? I have met a lot of great people through the Immune Deficiency Foundation. Q: What improvements in your IVIG would you like to see from processors of IVIG therapies? It would be great to have a better method of administration. |
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.