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MyStory
Archive 2006 - 1
Cameron, a 13-year-old with CVID
Cameron had a cough every fall and winter since he was two. He had hearing loss, always had a runny nose and had a lot of stomach problems. As he got older I thought he would start growing out of these things. His doctor dismissed me when I complained about his constant symptoms. He was tested for allergies when he was 4 and diagnosed with asthma when he was 9. Last year at age 12 he kept getting sick without any real break. At the end of April 2004, I had him at the ENT doctor who asked if he had ever had his immune system checked. I said no. My allergist/immunologist did blood work and my worst fear came true - my son had CVID. He has no IgA, very little IgM(18) and his IFF was 363 (the normal range begins at 800). Q. How often is Cameron infused? His first two infusions were done in the hospital. They went well except for the long wait for the drug to be delivered. He did not experience any real side effects and emotionally seemed to handle things well. The first in-home infusion was done in Oct. 2004. Cameron plays his guitar during his infusion. It lasts about 3 to 4 hours. Q. What was your experience with your immunologist? My immunologist is my asthma doctor so I had already been going to him for about a year before my son was diagnosed. He is a very smart man that cares greatly about his patients. Any time I have a question he personally calls me, usually within the hour. His staff is great and they also will call me right back. I have a lot of questions. I am very involved in my son's care. I researched everything about this disease and the drugs that are used. My doctor did everything he was supposed to do and then some. I am very lucky to have a great doctor in my area. Q. Have any organizations or support groups helped you and your family cope with this chronic disease? The Immune Deficiency Foundation. Q. What is the most difficult part of living with a primary immune deficiency? Worrying if my son is going to get sick. We were at the ER on Christmas morning with a fever and cough. It is also difficult because people don't know about this disease. When I told his school, they asked me if it was AIDS. I sent them information to pass around. I tell everyone about it. I work with the public and I want people to know. My son doesn't like anyone to know; he tells his close friends. I worry about my son's future and hope for a cure. The disease doesn't bother him as much as it bothers me. I have learned it is now part of our lives. You learn to live with it. I still get emotional from time to time, like now, when I'm writing to you. Q. What advice would you give a person newly diagnosed with a primary immune deficiency? What advice would you give that person's family? They need to get very involved in their own care. Research this disease using the Internet. Get on all the web sites to see what gives you the best information. Research the drug you are taking; know the side effects; know how the drug is prepared - it's different for every brand. I try to remember that things could be a whole lot worse and that this disease is treatable; you can live with it. Q. Describe your experience with your insurance company? In December, my insurance company purchased a pharmacy and they shipped my son's drug. It was a little scary at first. But the people on their IV team are wonderful and you develop a friendship with them because you talk with them once a month. I also had the experience of an insurance company not paying for the infusions. I got on the telephone right away to straighten things out. Always look at your EOB (Explanation of Benefits) from your insurance company. Q. Is there a silver lining to having this condition? Yes. It makes you a stronger person. I always thought if I ever received news that one of my children had a rare disease, I would be devastated. I was at first. But it's not the end of the world. Life goes on around you and everything will be ok. Q. What improvements in your IVIG would you like to see from processors of IVIG therapies? I would like my son to have his fanny pack and IV bag back instead of his IV pole and glass bottles. I would also like a longer usage time after reconstitution - instead of 24 hours, maybe 48 or 72 hours. |
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.
