Tuesday, October 6, 2009

IVIG 9, Our Freezer Mess and Trip News :)

Our trip was wonderful. All the updates are now live at Adventures in an RV and pictures should be added by the end of the week. We came home to find the power out in our garage and all the food in our "outside" freezers lost (we had been stocking up on sales and had a lot of frozen meat, so it was a significant loss) and a horrible mess and smell to deal with as we cleaned it all out. My mom came over for moral support and we documented the whole clean-up process with a camera for our insurance claim. In the end we had to throw away two large garbage cans filled to the brim with stinky, rotting, fly-swarmed food. Knowing how many people are struggling to put food on their tables at all right now, it was heartbreaking to see such waste, but we are thankful that our home owner's insurance is going to cover $500 of our losses.

Physically I did surprisingly well on our trip, I think in large part due to the IVs. Usually I have IG treatment ever 7 days (on Sundays), feel pretty bad the first day or two afterward, then often start feeling noticable improvement by about Thursday or Friday - I still wouldn't go so far as to call these "great" days, but many weeks they are encouragingly "better" days toward the end of the week.

Before our trip I had infusion #8 on Friday, just 5 days after #7, and it was a miserable experience, lasting nearly 8 hours and putting me in bad shape on Saturday and even the day we left, Sunday. But I was alseep before 9 just about every day of the trip (some nights as early as 7:30) and napped in the big bed in the back of the RV ever time we traveled, so between all the sleep and the ability to not be strapped into the confines of a car seat, I did not suffer many of my common phyical issues with extended travel. We used my wheel chair a lot and specifically chose not to do certain things in hopes of being able to more fully enjoy the things we did attempt. I only felt truly let down by my body once, when I was unable to join my family on a hike to try to get to the California tunnel tree, but overall, we just took it slow and focused on having fun as a family. Even with my pressure point bands and bonine, I was pretty miserable (nausia, feeling like I just couldn't take another moment in a moving vehicle) by the time we got to Monterey on Sunday afternoon, but that was the worst of it.

I did not have IVIG #9 until this past Sunday, putting 9 days between infusions this time around. Not only did I have a couple of extra "better" days at the end of the week because I didn't have to jump right back into another infusion so quickly, the infusion itself took only 2 1/2 hours with no complications during the IV!!!

While the infusion itself went quite well, I did have a pretty scary reaction after coming home (about 5 1/2 hours after my benadryl and maybe 3 hours after the end of the infusion) where I began struggling to breath to the extent that we were debating between going to the ER (but were afraid they really wouldn't know what to do with me not understanding my whole history) or simply calling 911 if it got any worse. After a double dose of my inhailer and another round of benadryl, it took about about 45 minutes for the frightening episode to begin resolving, allowing me to breath more freely again. In the meantime I was dealing with violent shaking (I think from the albuterol), ended up eventually hyperventalating (actually what I think finally allowed my body to settle down as I super-oxygenated), my PICC line started bleeding again (got that stopped pretty easily with a sand bag pack) and I had to fight from throwing up due to sever nausia.

The whole time I just kept thinking, "What I wouldn't give for a home oxygen tank right now!" as this felt like almost an exact duplicate of the reaction I had had during one of my early infusions when we first realized the need for oxygen through the infusion process, but without the safeguard of medical care readily available. My primary care physician suggests that it may be because we did such a fast infusion (the only other times I've been able to do it in 2 1/2 hours have been with saline co-pumping, something we learned is a medical no-no) and that next week we slow it back down and that I take zyrtec the morning of the infusion along with the benadryl just prior to infusion. Zyrtec is 24-hour acting and is a different kind of antihystimine so can be paired with the benadryl. All I know is that I hope I don't have another reaction like that one! Only 3 infusions left, they we evaluate if I go for another 12-week round or not.

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