Okay, guys, confession time:
I'm kind of a druggie.
Actually, I think the term my doctor prefers to use is "compliant patient," but come on -- let's call a spade a spade. On a typical day I take pills, shots, and a few drugs designed to be snorted directly up the nose. Supplement that with the occasional (nebulizer) pipe and at least a few binges of hardcore IV drugs a year, and it's tough to make the argument that I'm not completely dependent on the stuff. I'm more than a little grateful for the chance to have all these little treats in my arsenal against rejection, infection, and their old pal cystic fibrosis. And I think it's fair to say that it's come to a point where getting my daily fix is more than a habit -- it's literally a matter of life and, well, breath.
And I'm also pretty lucky, because I can tolerate almost any new drug my doctors decide to throw at me in terms of allergies or side effects. Longtime readers may remember that right before my transplant I was reacting to literally everything under the sun, but in terms of relative severity to many of my fellow journeyers down the CF road, my "no deal" meds list is pretty small, and is entirely limited to antibiotics. Even drugs like the rabbit juice (um, make that "rATG") don't seem to impact me much, and beyond a slight sense of discomfort or irritation I'm generally good to go.
And then I met Campath.
Yesterday wasn't terrible, honestly. They premedicated me with a LOT of drugs, including IV solu-medrol (steroids), a small dose of oral pred, IV zofran (anti-nausea), tylenol, and benadryl. They also ran the drug pretty slowly, with what I understand was 30mgs infusing over a period of 2 hours after a dose of prophylactic IV antifungals. And the whole time I'm sitting there kind of giggling at the process, because I think there is NO WAY I'm going to need all these drugs because, really, I'm pretty darn stoic when it comes to medical stuff. So we start the drug and I upload an episode of Project Runway on my computer (let s/he who is without reality TV show sin cast the first stone), and there we go. Easy as pie.
Easy as rancid, gross, totally disgusting pie.
About 1 hour, or halfway, into the infusion I suddenly felt extremely tired and nauseas. Approximately 30 seconds later I had my head in a hospital basin and things were not looking pretty. My long-suffering mom ran to grab the chemo nurse while I contemplated the truly gross reality that is hospital food the second time around. Trust me when I say that I will never again claim that hospital food "looks like vomit." Been there, done that, ain't going back.
After a few minutes of that awesome activity, my body decided it was done trying to rid itself of IV poison via traditional methods, and decided instead to go into hibernation mode. They checked my vitals as I stared stupidly at the machine wondering what all those pretty numbers meant, and I emerged from complete burnout only long enough to insist I wanted to continue the infusion. Then I conked out for the entire rest of the treatment and then some, which I highly recommend to anyone thinking of receiving this drug. This has reaffirmed my long-held belief that the best way to combat problems you absolutely cannot solve is to go to sleep. Because when you wake up you'll probably see things differently, be refreshed, feel ready to tackle the rest of the day, and um . . . have some really cool looking hives?
Okay, maybe not so much that last one.
The hives didn't show up for a couple of hours after finishing the treatment, which apparently isn't that uncommon with this particular drug. It started with a distracting itch on my leg, and when I went to examine it I found a couple of small red bumps. I wasn't concerned, checked my stomach and scar area only to discover more hives, and chirpily called my nurse for some additional benadryl, which she promptly brought within 5-10 minutes or so of the request. By which time I was a raging ball of hives madness. And yes, I'm serious. It was like 0 to 6 million hives in 5 minutes flat.
I'm still pretty lucky, by the way. In the grand scheme of things, vomiting, aches, fatigue, and hives aren't much to complain about, especially as it seems I got off pretty easy compared to some people. There was no closing of the throat, no scary "oh my God I can't BREATHE!" style moments, and nothing particularly remarkable about the entire event -- unless you count my lifting my shirt right up to my scar line in the hallway to show a member of the medical team (some of) my spots. Classy. Thankfully that too was a relatively minor blip, as the very old man with the walker seemed completely oblivious to my very red, very bumpy midriff at that moment. Can't say that I blame him on that score, honestly.
The truly great news is that I woke up this morning with far fewer spots and hopefully at least a some fewer t-cells. I asked the other day how long it takes Campath to "work" in the body (i.e., how long before I have the desired effect of dramatically lowered t-cell counts) and was told that the drug works actually remains in your system and continues to kill t-cells (and b-cells, by the way) for a long time after you receive it. This is why it takes so long for t-cells to regenerate after this treatment. As for how fast my own counts are going down, that appears to vary some from patient to patient. In other words, I may be taking some of these suckers home with me after all, but they're not off the hook by any stretch.
So there you have it: the good, the bad, and the totally gross. Suffice it to say that I'm pretty sure this drug would have a very low street value if offered to the general public. It is NOT a fun ride, but I trust my team wholeheartedly and truly believe they are giving me the best chance at keeping Donor Bob around for a long, long time to come.
And that, beautiful people, is a habit I'd prefer never to break.
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
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