Sunday, January 10, 2010

Childhood and Early Adolescence

I was born with health problems. For the first 2 weeks of my life my parents had to walk the floor with me and hold me upright so I could breathe. Despite repeated trips to the emergency room and an early diagnosis of asthma, I learned to walk and talk at an accelerated pace, and although I was small for my age, I seemed to develop normally.

I had all of the normal childhood vaccinations, as well as a bad case of chicken pox at the age of 5. I also have eczema, so the combination was brutal. Doctors prescribed antibiotics repeatedly for various respiratory infections, but I don't know what type of respiratory infections they were, or how severe.

When I was 7, my family moved to a cold climate, and I had my first major pneumonia during that very first winter. Mom came to wake me up one morning because I'd slept later than usual, and I didn't wake up. In fact, I was completely non-responsive, and she quickly determined that I wasn't just asleep. She and my dad rushed me to the hospital, and the emergency room staff pumped antibiotics into me by IV. They determined that it was most likely a case of walking pneumonia since no one had known that I was even sick. My white cell count was higher than a leukemia patient's, so they knew that I had a raging infection. After that illness, the doctors told my parents that I was going to keep getting pneumonia until I could go 2 years without needing antibiotics, and that even catching a cold would make me going into pneumonia.

I was referred to an Ear Nose and Throat (ENT) specialist at a children's hospital, and she did a second round of allergy tests, tested me for Cystic Fibrosis, and also tried to determine whether the convulsions that I'd gone into during my pneumonia were related to epilepsy. They confirmed that I had major allergies, but nothing else came of the tests. They changed my asthma and eczema medications, and the doctor told my parents (in front of me, because she was angry) that if I continued having such severe asthma attacks and repeated pneumonias that by the age of 30 I'd have the heart and lungs of a 90 year old woman. Because of that, I grew up thinking that I would die before I reached the age of 30, and had a certain fatalism that you don't expect to see in children.

As it turned out, going 2 years without needing antibiotics has been virtually impossible. There were some years where I'd have pneumonia along with ear infections and throat infections multiple times in one year. I would estimate that by the time I was 15 years old I'd had pneumonia over 20 times, and been hospitalized for 2 consecutive years if you put each stay back-to-back!

4 comments:

  1. You are the Bomb. What a great resource for a newly diagnosed patient. I would have studied this constantly to help try to aclimate myself to this new diagnosis that so few people know anything about. That was only about a year and a half ago, and there was even less information then. CVIDers, are starved for information that they can understand and embrace.

    Thank you for your courage and for sharing all that you are learning along this journey. More people than you know are listening and appreciating. God Bless YOU.

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  2. Thank you for your comment, it inspires me to continue with this! :)

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  3. Thank you! I just found this! I'm a mom of 2 and found out something was wrong when pregnant with my second. I haven't had it as bad as you but I'm thankful to you for writing this!

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