Eighth IVIG Treatment

IVIG #8

Saturday, July 17, 2010
Today when I walked into the infusion center at 9:30, Jane (my nurse from infusion 7) introduced me to Christina, who would be my nurse today. She assured me that she'd told Christina to keep the speed at 50 cc/hr or slower. I was happy to hear that because I'd prepared myself to argue to keep it below 75. Christina was sweet, and when she started the IV it hurt less than usual. No blown veins, and no other problems. :)

I started out watching a movie, but I got too sleepy as the benadryl kicked in and took a nap. Mom woke me up at 1:00 because she got worried that it was going so slowly that the nurses were going to give me attitude near closing time, so she asked the nurse about increasing the speed to 75 to make sure that I was done in time. That was when I learned the conversion to calculate the amount of time it takes to do an infusion.

Anyway, the nurse raised the rate to 75, and we finished at 4:55. My next infusion will be August 6th at 8:00 AM. That way if I need to keep it at 50 all day, I can! :)

The 75 rate seemed to work for me. I wasn't dopey after my nap. I finished my movie and spent some time on the computer.

After my infusion I had my mom take me to visit my brother, and we hung out with him, his girlfriend, and a few of their friends for about 3 hours. I had a really great time, and still felt good when we left. I did however, need to leave because they were smoking a lot, and it was really starting to aggravate my lungs. We then came home. My one big concession to resting today has been working on my laptop in bed rather than sitting at my desk. Anyway, it's been a great day overall, and I think I'm ready to sleep. :)

Update

Monday, July 19, 2010 

I had my infusion on Friday, and yesterday (Sunday) I went out with my boyfriend and his son to a park for a play date with other children. Being at the park was fine, except I was a little paranoid about playground germs. I tended to pace a lot because everything seemed sticky and dirty and I didn't want to touch anything. As a result, I probably expended more energy walking around there than I should have and thoroughly exhausted myself. I'd thought that it would be no big deal to go on such a simple outing since I'd had a day to rest, and the infusion had gone smoothly, but I really over-estimated my abilities. Due to the circumstances I was stuck with walking around and sitting when I had to until my boyfriend was able to take me home a few hours later. By that point I was so exhausted that I just wanted to curl up in a ball and cry myself to sleep. I just wanted to do something normal with people that I care about, and that was too much. I know I wasn't fun to be around either.

Another infection and my doctor visit today
Friday, July 30, 2010

I have been so exhausted lately, both emotionally and physically, and for at least the last 3 weeks. I went to my doctor today because I have a sore in my mouth that I knew last night was infected (I still have my wisdom teeth and I'd bitten the inside of my cheek with it), and my sinuses have been stinging for days along with headaches. Anyway, I have the beginnings of a bladder infection, sinus infection, and possibly the beginning of pleurisy. Because I rinsed my mouth with hydrogen peroxide last night and this morning, she said that the sore is not infected, so I'm just going to keep using the hydrogen peroxide on that. She gave me a prescription of Levaquin for the sinus/bladder infection, and I hope it will take care of pleurisy too if that's really what's happening.

We talked about whether it would be wise to have my wisdom teeth removed (no pun intended) because I bite myself a lot, and she said that it's really up to me, but I should have it done while I'm on antibiotics if I want them removed. I'd do it during this round of antibiotics, but I also need to do it soon after an IVIG treatment. I might put it off another 6-mos or year, I mean, I've been putting up with this since I was 17 or so, what's another year?

We also discussed a referral to see Dr. David B. Lewis at Stanford, and it turns out that she knows him! She said she was happy to refer me to him and that I should have someone really knowledgeable treat me, and she even told me that if I want to transfer my care to him that I shouldn't worry about hurting her feelings. I thought that was really sweet, because I was worried about that even for asking for a referral. However, I think that seeing him as my regular CVID doctor would probably be cost-prohibitive especially because he's out of network. I expect that I will keep him as an annual visit kind of doctor or every 6 months. Still, it will be awesome to see someone who's focus of study is primary immune diseases! :)

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!