On Being Patient

One of the many great "perks" of post-transplant life is that you get to make lots of new friends in the phlebotomy (blood draw) lab. Frequent bloodwork is a hallmark of good care after a transplant because so many of the drugs we're on require specific levels and/or can affect other things, like kidney function. The bloodwork routine seems to be even more aggressive for post-tx CFers, and it's even MORE aggressive after something weird happens -- like, say, when your prograf level suddenly skyrockets to ridiculous heights for no apparent reason.

Adding to the fun is the always exciting game of trying to time any bloodwork so that it falls more or less exactly 12 hours after your last prograf dose. I know that probably sounds pretty simple (show up 15 minutes before the desired time and that's the end of it), but trust me: when you're dealing with crowded labs and misplaced requisitions and overworked staff members and the timing of multiple tests/appts in a single day, it can get kinda hectic. My general strategy is to allow approximately one hour for any given test at my hospital, meaning that if I need PFTs first and bloodwork second then I should arrive about 10 hours after my last med dose.

Most of the time, this works.

Today I needed bloodwork. The bloodwork was due at 11, so I used my one test = one hour formula and arrived at 10. I went to grab my requisitions and was told they weren't there, and that I needed to wait. Fine. Then I was told to sit outside, in a separate little area along with another patient. Okay, fine again. So I do, and I'm sitting, and everything is great until the other patient leans over and tells me I should be careful because he's sick. Not fine. I'm immunosuppressed -- actually I'm OVER immunosuppressed right now -- so that's not gonna work.

I peek my head back into the office and am told they're still waiting. It's about 10:15, so I'm still okay on time, but not so much on seating arrangements. I tell the staff this and they agree I should go to the main waiting room. So I do. And I sit. And I wait.

At 10:40 I decide I should probably start being annoying if I want to get bloodwork done in time. I stand up and start to walk back to the office, but am stopped by a tech who says reception is "going nuts" trying to find me. Um, okay. Go back and it turns out they had looked for me in the original spot, where the sick patient was still sitting. Seriously?

Finally armed with the scripts, I head down to the blood lab and, thankfully, there's no wait. Also thankfully, it only takes 2 tries to get all the blood they need (trust me, 2 tries is nothin'). So now I'm all happy again and the blood tech and I are joking around and then she hands me back a prescription and says "you gave this to us but it's for PFTs." Huh?

Back up to transplant to ask about whether I need PFTs, but no one knows. Reception just printed the slips they said were ordered. A full set of regular clinic slips would also include x-ray, so I know they didn't just print a full set by accident. Did my doctor order PFTs without telling me? Seems possible.

So I email my doctor, head to the PFT lab "just in case" and find it PACKED. Not cool, transplant gods. Not cool at all. Still no response from doctor so I do what any normal transplant patient would do: I take a completely arbitrary poll of other patients I know via text message. Weirdly enough, none of them knows whether MY doc has ordered PFTs for ME today either. Shocker.

Did I mention I normally leave an hour per test? That's not an arbitrary number, guys. That's because, in my experience, every test actually takes between 20 minutes (on a good day) and 45 minutes (on a less good day). Today was not a good day.

Blessedly, after about 35 minutes of waiting my doctor wrote me back and told me I did not, in fact, need PFTs. Getting up to leave I could actually feel the jealous stares of my fellow inmates -- er, I mean patients -- in the waiting room. Looking at my watch revealed that I had been in the hospital 2 hours, less than 5 minutes of which involved actual medical work. I had a strong desire to yell "freeeeeedom!" Braveheart style on my way out the door.

Of course, not every day is like this one at my hospital. For every lost requisition or wasted minute there's an equal story of a comforting staff member or helpful receptionist or super fast appointment. And, of course, the quality of the team is out of this world good -- and at the end of the day that's what truly matters, right?

Then again, I think I know where they got the term "patient."