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MyStory
Archive 2004 - 1
Q: How did you find out that you had a primary immune deficiency? Kadye was 2 lb., 1 oz. at birth. She was 9 weeks premature. For the first 3 years of her life, she had 33 ear infections, 2 sets of tubes, chicken pox three times and shingles before her 3rd birthday. My son's allergist recommended that an immunologist see Kadye. After the initial testing, she was diagnosed with hypogammaglobulinanemia; CVID. Q: How often are you (or your child) infused? Kadye is infused every three weeks. She has received IVIG for the past 8 1/2 years and it has been just since March 2003, that we began doing it without the assistance of a home health agency. I was trained by Kadye's first nurse and to date we have had 13 infusions successfully at home and alone. Q: Describe your experience with your immunologist? We have a great immunologist in the Minneapolis area. His staff is always there for us...and he is more then just Kadye's doctor, he has become part of our family. Q: Have any organizations or support groups helped you cope with this chronic disease? The IDF. Our first conference was in 1995, just as Kadye was beginning her infusions. We also attended several other family conferences in Minnesota and most recently, the 2nd IDF national conference in Baltimore. It is like a family reunion!! Having others to talk to who can relate.....is beyond words! Q: What's the most difficult part about living with a primary immune deficiency (or caring for a child who does)? Other people's misunderstandings or ignorance. 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? Take it one day at a time. When they are sick...knowing you are there means the world....and when they are well...enjoy them to the fullest. Q: Describe your experience with your insurance company? So far so good. I went through SSI for Kadye in 1994. Since then I have had to go back through several re-determinations because of their lack of getting all the information necessary. Q: Is there any "silver lining" to having this condition? The silver lining for our family, for Kadye, is that she is here...getting
ready to celebrate Q: What improvements in your IVIG would you like to see from processors of IVIG therapies?
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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.
