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MyStory
Archive 2005 - 1
Q: How did you find out that you had a primary immune deficiency? When I was a baby I had pneumonia and couldn't get rid of it. My pediatrician did a CBC and discovered that my white blood count was low. I was diagnosed at three months of age. My father and two cousins also had immune deficiency. Q: How often are you infused? I am infused every three weeks. I used to get my IVIG in the hospital, but now I get it at home with a homecare nurse. I have been getting IVIG ever since I was two years old. I get the infusions through my port (which is the greatest invention of all time). It takes three hours. My dose is 40 grams. During the infusion I usually watch movies, do homework or fall asleep. Q: What has been your experience with your immunologist? I have been to many doctors – more than any one person should need to see in his or her life. The one I am seeing now is the best doctor I have ever had. I met him through my pediatrician. I have been going to him for seven years now. He has helped me get my asthma and allergies under control and has adjusted my IVIG dose so that it really helps. I find that immunologists are a lot more helpful than regular doctors. Q: Have any organizations or support groups helped you cope with this chronic disease? No organization has been more helpful at keeping me up to date on the latest treatments and getting me through school than the Immune Deficiency Foundation (IDF). They have so much to offer. Since this disease runs in my family, we knew how to deal with it. But when it come to explaining primary immune deficiency to others, the IDF website helped me put it in plain language that everyone could understand. Q: What is the most difficult part about living with a primary immune deficiency? The most difficult part about living with PI is that when you try to explain it to people, they either think that you have AIDS or they think it is contagious. I also find that it is really hard when you want to do something, but people tell you that you can't because you are not like everybody else and that you have to limit yourself so that you don't get sick. Q: What advice would you give to a person newly diagnosed with a primary immune deficiency? What advice would you give that person's family? The best advice that I can give is that you should never let anyone tell you that you CAN'T do something because you are sick. I have had PI since birth and my family, and even my doctors, said that I could never be what I wanted to be because I was sick. Well, I am now studying to be a doctor. Yes, things may take longer, but if I want something, I do it no matter what anyone says. To a family member of a person with PI, I must say that the best thing that you can do is to be supportive. It is hard to be sick all of the time. It's hard to walk around hacking or to have an IV pole stuck to you, so just be there for them. Q: Describe your experience with your insurance company. I have had many insurance companies throughout my life, and I
was always Q: Is there any silver lining to having this condition? I always try to look on the bright side of things. If I had to choose the silver lining, I would say you get to meet all kinds of different and neat people. Q: What improvements in your IVIG would you like to see from processors of IVIG therapies? I have been getting IVIG treatments for sixteen years. The only improvement that I would like to see is a product that dissolves faster. |
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.
