Friday, June 21, 2013

My Name is Piper...

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.


  1. Hi Piper-
    Awesome post! Feel better! Can I ask a question? Why do so many people with CF seem to fare better then others after lung transplant? I am wondering if trans might be in my future and your blog has made me more and more excited about it but I am also scared of problems. Do you think trans is easier then cystic fibrosis? Is it worth the pain? Sorry for so many questions but I need someone to tell me straight. THX AND XOXOX- Cassie

    1. hi cassie:

      thanks for the sweet message and for reading about our latest, um, "adventures" around here! appreciate the continued support and love more than you guys will ever know.

      as for your question, i'm not a doctor so i'm not sure i can give you a very good answer. my guess would be that different people with CF fare differently after lung txp because people with CF are different people, period. meaning that just because we share the common thread of two mutated CFTR genes, we still have very different bodies in a lot of ways. so my theory would be different bodies + different doctors/medical care + different donors + different environments and exposures to germs + different drug regimens + different personal factors (eating habits, exercise, attitude, compliance, etc) + just different LUCK all play a large role in why different people (CF or no CF) fare differently after txp.

      i do know people with CF have certain shared characteristics that docs look out for after txp to minimize risks, such as infection with colonized bugs from the sinuses, weight gain issues, and CFRD. if you have crazy bugs hanging out in your sinuses, that could probably play into a bumpier ride post-surgery. but again, my guess is that a lot of it is just plain luck and/or the ability of the donated lungs to readjust and make a happy home in the new body.

      whew! great question -- hope i at least started answering it for you! please, please, PLEASE don't take my word for it though. if you're worried about transplant complications, please bring it up with your doc ASAP and see if s/he can help discuss your individual risk factors. good luck and lots of light your way!

  2. Hi Piper:
    I am very pleased to see that you are living well, and to know that your dad and mom are also well. Mike and Kathleen were my neightbors on Oak Hills Drive, in the Springs, and the day our basement floor was poured, with only I and my then husband to manage, they rescued us with warm soup, good friendship, and blankets! It was 32 outside, and a scoop of wet cement weighed half what I did. I have run into your dad over the years, but nor for about 10. I live in Denver. My best wishes to you, so happy you are enriching the world!

    Best wishes for all good things,

    Libby at