Katie's BMT Updates

I am feeling a little bit like this little red caboose today. See how torn up and rusty he is? See how he's so tired that he's barely hanging onto the track? I'm looking at him and wondering if he'll ever feel wind on his wheels (I haven't seen a working caboose around in a long time, at least around here). I bet he's looking back at me thinking similar things, too.

We just found out that I don't get to go home today. My oral Tacrilimus or "Tac" (crazy immuno-susspressant drug that allows two sets of DNA to share my body) levels aren't cooperating by rising to "therapeutic" levels (read: bad things could happen). Out of all the drugs I take, Tacrilimus is King. Basically, if Tac's not happy, I'm not happy.

Today, in my more bitter moments, I think I just might be here forever. That, and can you believe my f&*king gallbladder is gone?

The silver lining, however, is that I am becoming a great resource for all of you as you grow older, wiser and frailer. Here's another Top Ten list to stick into a drawer until you need it:

Top Ten Things to Do to in Order to Survive a Lengthy Hospital Stay

1. Don't go anywhere that doesn't have a wireless connection that patients can access. It's helpful if it's a good one.

2. Bring your laptop. If you don't have one, strongly consider getting one; they are a great source of entertainment, acting as a DVD player when needed, and a can't-live-without source of communication ... It's cool when 1, 2, or 3 friends call a day to find out the "latest," but soon it's the telling the story about your sickness that starts making you sick. Consider keeping a blog ... or a daily Facebook update. One nurse even suggested getting an old phone with answering machine, where you or a family member can leave "updates" as the greeting.

3. Invest in a good pair of noise-canceling ear phones. If you have to share a room, they will prove invaluable. (Or, you could just get a immuno-compromised disease like leukemia so you're practically entitled to your own room.)

4. Be your own advocate (and have a friend or family, act as one, too, because honestly there will be some days you'll be glad to not necessarily remember.) Pay close attention to what medicines you're getting and why, what treatments are needed and take care to understand the details, etc. Even in the best hospitals, mistakes are made. When I was first admitted for my gallbladder, I was put in a room with a roommate suffering from pneumonia -- of all things! (For those of you who don't know, getting pneumonia right now could well, like kill me.)

5. Other stuff to do: Even my husband can't be on the computer all day (you know it's true, Ian!!). You should bring a book (just one or two!), a couple of magazines and an empty notebook with a pen. Even if you do really use all this stuff, you can have a friend or family member bring you more. Your room will already be covered with extra cans of soda, Ensures, puddings, etc. and clutter is just depressing.

6. The comforts of home. Bring your own cuddly blanket, underwear, and socks. While you're at it, you'll definitely want a robe and slippers. You could go further and bring your own jammies & toiletries, but that's a call you gotta make. I brought everything the first time ... and found out pretty quickly that you really don't need everything. Imagine being too sick for face cream. It happens, sad as it is.

7. Whenever you can, appreciate your nurses and nurses assistants by doing some of the gross stuff yourself. For instance, there's this weird thing about hospitals where they like to keep track of how much you pee, thus you pee in this plastic bowl they call a "hat" that fits over the toilet (in case you're wondering, it's two hats if they want to see #2 -- ewww!). When I was feeling well enough, I dumped my own pee and recorded the amount on the wipe board so the nurses would just have to write it down. Mind you, it won't always be possible. You'll be too sick to get up. You'll be anchored to your bed by too many tubes. But when -- and if -- you can, make the effort. You're creating a beautiful new relationship with the person who's basically in control of your pain meds, adorns your bed with fresh sheets, answers your calls first from the switchboard.

8. Don't be a sissy. Take the pain medication -- and speak up if it's not working for you. Also, don't be afraid to ask for pain medication. If you wait for your nurse to come in and say, "Would you like your pain medication now?" you may be waiting all day. Plus you're in the hospital, one of the grimmest, most banal places on Earth -- a step up from prison. If you can make your day go by a little faster with a little of the la la's and a lot of sleep, bring it on!

9. Get up and walk every day, if you're able. I know, doing laps around the ward is not that exciting, but it will keep your muscles and cardiovascular system strong. Walking is important for getting well! (Never do this barefoot, by the way. Always wear no slip socks, slippers or shoes.)

10. Change the date on your calendar -- there's one in every room. Mostly, a nurse will do it, but if they get behind, make sure it gets done. You really do lose track of time and days when you're on "the inside."

That's all for now ... Hopefully, I'll really be getting out of here today!

cheers,
Katie