Welcome to my IDF Walk for PI fundraising page! I’m always excited about the walk, but this year is unique because the pandemic has gotten many people thinking about the immune system, which actually helps me to share my story. If you have the time to read for a few minutes, I would be so grateful. When you have a “rare disease,” it’s rare to feel like someone really gets it. Then, if you're inspired to help patients like me, please make a donation. Your generosity supports the IDF and its efforts in education, advocacy, and research benefitting people with PI. Thank you!
There are many different types of PI. The way it works for me: you’ve been hearing about how the COVID vaccine will help you make antibodies to recognize and fight COVID in the future. Or, if you had COVID, you probably got at least some immunity for a few months because your body can get partway to immunity without a vaccine. Imagine your body couldn’t do this, not just for COVID, but in general. You could get sick with the same bugs over and over again. My body is like that, especially when it comes to bacteria. It’s like my immune system has amnesia!
I can make antibodies with the help of a vaccine, but there aren’t vaccines for most bacteria. With viruses, it’s sort of iffy, so that my immune system does generate some protection, but I still may get sicker from colds, stomach bugs, etc. and stay sicker longer. If I avoid you when you're sick, it's not personal.
The only treatment is to add someone else’s antibodies to mine, to do the work for me. How do I get other people’s antibodies? From infusions of “immunoglobulin.” Generous people who donate plasma literally keep me alive. If you’re a plasma donor at a BioLife facility, we’re sort of “blood brothers.” THANK YOU!
I do infusions every 2 weeks, usually on a Friday night. I put needles in my legs and leave them there for a couple of hours, adding 75ml of liquid medication. Then I’m good to go, right? Sort of. Immunoglobulin is a thick liquid that is a challenge for the body to absorb, plus it hops up the immune system. If you got your COVID vaccine and had a typical reaction, I feel sort of like that every other weekend...for the whole weekend.
Fatigue: check. I often sleep 10-12 hours the day or two afterward. The fatigue varies, but when it hits, it hits hard. No choice but to go to bed, otherwise headache and nausea set in. Dizziness: check. It keeps me from bending to pick things up. Moving my eyes makes it worse, so I can’t use the weekend to catch up on reading or do any hobbies that require looking down—like sewing or any other detail work. I also need to “take it easy” in general. Hot/cold: inability to thermoregulate. If it’s too hot, I get physically ill. This severely limits my options during the summer. If it’s cold, I’m drinking tea, piling on the layers, and carrying around a microwaveable warm pack. It’s a little joke around our house: Me: “Where’s my warm thing?” My husband: “Right here,” pointing to himself. 😂
You may imagine that I require some help during these recovery times. You’d be right. I am so lucky to have a wonderful husband (Kevin B.) who picks up the slack, perhaps more than he acknowledges. He also keeps me honest. When I drop something for the fourth time that weekend, get tired of asking for help, and try to quietly pick it up myself, he always knows. It’s like he has telepathy. Even if he’s in another room, he’ll call out, “Are you picking something up?” Me: “No?” Him: “Don’t do that!” Another comical moment in an infusion weekend.
And when I do have a relatively easy recovery and we decide to run a few errands, he patiently waits while I find a bathroom in every single store, the result of hydrating sufficiently to absorb the medication and prevent worse side effects.
Think of all the things you do on weekends. Catch up on housework. Cook meals for the upcoming week. Garden. Work out. Socialize. Attend family events. Travel. Maybe go to church or engage in a religious practice of your choice. Now, give up half of those weekends.
I hope this doesn’t all sound like a downer. Sure, it sort of is. But I feel fortunate because I have responded well to treatment. Some people with PI continue to struggle much more than I do; the immune system is complicated and can malfunction in more than one way. Some don’t respond to vaccines at all. In a pandemic, that’s particularly scary. Aside from PI, many, many people live with chronic illnesses, and they all have their challenges. My goal is to live my best life, challenges and all.