 |
   |
 |
|
|
MyStory
Archive 2004 - 2
Q: How did you find out that you had a primary immune deficiency? I've always been really sick ever since I was born. Doctors have suspected it (CVID) but never did the required tests. Earlier this year, I was finally sent to an immunologist to figure out what was happening. She thought it was CVID, but sent me to get a blood test to confirm. We came back a few weeks later and it was CVID. Q: How often are you (or your child) infused? I get an infusion every four weeks, but it tends to wear off after three weeks. The last two times they gave me more, but that doesn't seem to help, so I might go for an infusion after three weeks. My first infusion was terrible. I had a reaction to the type of IVIG they used, plus they had the IV going way too fast. I got terrible headaches and nausea so I was given medication. But for the next week, I had headaches and some of the nausea, so I missed a lot of school. Now they give me medicine beforehand so I don't get sick. We still have problems with getting the IV in. My veins are terrible, they roll. We're looking into Sub-Q. Q: Describe your experience with your immunologist? I've been seeing her for the past several months. Every time I go, the nurses are always very nice and my doctor is completely understanding. She even offered to give me the number of a girl my age who receives infusions, so I could talk to her and wouldn't be as scared. Q: Have any organizations or support groups helped you cope with this chronic disease? My grandfather usually comes to my IVIG treatments, even though I'm asleep, it's nice to know he's still there. My friends are always there for me, too! After my first treatment I went to school the next day (BAD idea) and started feeling sick. I stayed after school for an activity and started crying. My friends were all really supportive and caring. The Immune Deficiency Foundation has a great web site that I use to communicate with other kids my age and read more about my condition. I was so lost about my disease before. Q: Can you suggest any Web sites where you have found helpful information about primary immune deficiencies and the therapies used to treat them? www.primaryimmune.org. That's the Immune Deficiency Foundation's site. Q: What's the most difficult part about living with a primary immune deficiency (or caring for a child who does)? The thought in the back of your mind that you're not being protected is hard. I'm always afraid that I'll get something terrible. But life goes on. If you live in fear then it's not worth it. 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? I'd tell them that it's tough and it's scary but it could be worse. If you have doctors and friends who back you up then it will be so much easier. Don't think of it as something that holds you back, but as something that makes you that much stronger. Q: Describe your experience with your insurance company? My mom and my dad each have separate insurance companies. There are several different types of gamma globulin. One isn't as good, but it's cheaper, so that's the only one the insurance companies would pay for at first. That is the one I had a reaction to. But then they paid for the other type I needed. Q: Is there any "silver lining" to having this condition?
Q: What improvements in your IVIG would you like to see from processors of IVIG therapies? I never really thought about improvements. I'm happy enough already just having the treatments. |
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.
