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MyStory
Archive 2004 - 6
Q: How did you find out that you had a primary immune deficiency? Right after my daughter was born (she is now 5 1/2), I started getting sicker than what was "normal" for me. I always had lots of sinus, ear, and skin infections throughout my life, but it really intensified. I was on antibiotics every other week, and went to countless doctors, but to no avail. Finally, after [I was] rushed to the ER because of a dangerously high fever and diagnosed with double pneumonia, a doctor did the right test and we realized I was immune deficient. Q: How often are you (or your child) infused? I am currently infused every four weeks, via IV, at my doctor's office. I bring my daughter along, since I am a stay-at-home mom right now, so we pack up a lunch, movies for the VCR, coloring books, and crayons. We are there about 3 1/2 hours. We enjoy our "doctor day" time together! Both of us still cannot watch the needle go in yet! My doctor says we look like we are at "camp" in his office! Q: Describe your experience with your immunologist? I now have a wonderful doctor, who is knowledgeable and caring. It wasn't always this way, though, and I feel very fortunate to have found him. My husband works for a large food company and we have been relocated three times since my diagnosis. I have had to find a new doctor and battle the insurance issues in three states. I didn't always end up with the best doctor for my disease, but I didn't know that, at the time. I was lucky to just be able to keep my infusions going so I could stay healthy. I am back in my home state now, where the care is outstanding, and we are blessed to have some doctors that understand PI. As I found, many do not. Q: Have any organizations or support groups helped you cope with this chronic disease? The Immune Deficiency Foundation (IDF) has been a wonderful help. I attended the first-ever national conference they presented in June 2001. I learned so much and met many great people, all affected by a PI. It was great just to know I was not alone. After the conference, I was even more motivated to work to help others with PI in my location and realized there was no local chapter here in Wisconsin. In April 2002, I was fortunate enough to be asked by the IDF to become a "peer contact" volunteer for my state. I attended a training session in Washington, D.C., and got to meet the other person asked to do the same from Wisconsin! Together we organized our first local seminar in October 2002. My goal is to continue to help people in my area diagnosed with a PI realize they are not alone. Q: Can you suggest any Web sites where you have found helpful information about primary immune deficiencies and the therapies used to treat them? The IDF, Jeffrey Modell Foundation, emedicine, National Organization for Rare Disorders, and the NIH are all Web sites I find helpful and visit frequently. Q: What's the most difficult part about living with a primary immune deficiency (or caring for a child who does)? Mostly, it's coping with the symptoms that the medical community has not found answers for mitigating at this time. I, like many patients with CVID, experience gastrointestinal problems that I have no relief from. Many days, I am unable to leave my home, as I am not able to control my stomach issues very well. Other than this, I am overall healthier – now that I receive treatment – than I have ever been in my life, so it's been great to be able to get through a winter without having sinus infections, flu, lung problems, and the like on a continuous basis. 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? You are not alone! There are many of us here that want to help and support you any way we can. The future looks bright, the medical community is making new discoveries every day, and we will only continue to be able to improve our lives with this information. Q: Describe your experience with your insurance company? I have been in an HMO, through my husband's employer, in all three states I have lived in, which has helped keep the costs to me relatively low and has meant I have not had to deal with insurance companies for the most part. As the medical costs keep going up, however, the employers are putting more and more of the costs on the employees. Many of the HMO options are being eliminated, and I fear I will soon be paying much more for my treatments from my pocket. Q: Is there any "silver lining" to having this condition? The friendships I have made and the knowledge I have gained, in areas that I would have never really paid attention to in the past, are both wonderful "side effects" of this disease. Also, as perhaps with any chronic illness, I have learned to take life slower, discover what is really important in life, and be grateful for each day. Q: What improvements in your IVIG would you like to see from processors of IVIG therapies? I would like to see more research on, and wider use of, other methods of delivery (e.g., subcutaneous) of IG. Being able to self-infuse, at home, would be a great thing, and would allow me to have greater flexibility in my schedule. |
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.
