March 1, 2006

"This blog needs an update even if you aren't running." OK, Mom, you asked for it, you got it.

Before I get to an update on me, though, I'd like you all to point your broswers to or download the video file at this link. It is a short video in which Jerry shows-and-tells about the equipment he uses when he jogs. Jerry lives just down the road from me and is a friend of mine. I knew he was hardcore, but this video really spells it out. As a runner, he is HARD CORE.

Also before the update, I'd like to give kudos to Fairway food store. I'm currently doing a show at 78th Street Theatre Lab, and I stopped by Fairway for some groceries before heading home tonight. The problem with Fairway is, you go in to shop for a $20 dinner budget and wind up spending twice that, not just because everything there is more expensive (hey, you pays for quality), but also because they've just got so many neat things that you can put in your mouth. For instance, I picked up a little chunk of port cheddar and a wedge of Spanish fig cake w/ assorted nuts, something I've never had before. You can find something new to try everytime you go in. And their fish department is fantastic.

So. Let's review: I've been sick for about three months. Back in late October or early November, something changed and suddenly I was experiencing a steady decline in my lung function, against which running was proving no defense. Before Christmas, I sought out my doctor's help and for the next two months, it was oral antibiotic after oral antibiotic - none of which had much effect. My lungs kept declining and I found it impossible to keep running. In fact, up 'til last week, even the five-block walk to the subway meant having to stop and rest once or twice and I was coughing the whole way. Climbing UP out of the subways was doubly-hard.

So I called the doc and laid it out: what if the lung infection isn't the only problem? There's also inflammation and asthmatic-reaction to deal with. Could we address those problems too? I asked because any effect the antibiotics may have had was probably being masked by the other problems. So she put me on Advair last week (I'm sure you've seen the ads) and I also have HS and Xithro coming, too. HS, or hypertonic saline, is a CF-specific treatment that started when an Australian researcher noticed that some Australian surfers with CF had great lung function and theorized it was due to inhaling all the salt-water. And the hypertonic saline does seem to work for a lot of Cystics, the secretions break up, clear out, and their lung function improves. Xithromycin is an antibiotic that is being prescribed for its anti-inflammatory effect and is a long-term, low dosage kind of treatment

I've already seen improvement in the last week in my ability to breathe. Seriously, within hours of my first dose of Advair, I was able to breathe easier.

More importantly, I am now on intravaneous antibiotics. It's been difficult getting results from the labs or even interpreting what they send, the doc says. One lab says I'm pan-resistant (borne out by the ineffectiveness of the oral antibiotics, IMO) and another lab says I'm pan-susceptible. I don't believe the latter for a minute. So my doc has me on IV meropenem and will be starting an as-yet-undetermined second antibiotic soon. (The double-punch is always better than a single med.) So here I sit, with a mid-line .... wait, you don't know what a mid-line is? Ah, time for more education...

IVs: A Primer.

There are four options: you may be familiar with the first, a peripheral line, which is a local placement with a short (perhaps 1") catheter, and is held in with a plastic butterfly taped to your arm. If you've ever had surgery, this is what you got. These come in all sizes, even for premies, and are quite comfortable. Unfortunately, they don't last long, as the smaller veins tend to break down quickly and the catheter part often clogs. (The first time I did IVs, they used peripherals only and I went through three in two weeks.)

A mid-line is a second option. A mid-line is placed by an RN and involves setting up a sterile field. The RN must wear a surgical gown and mask. Once the subway-axle-sized needle punctures the vein, simultaneously introducing a plastic shunt, it is withdrawn, leaving the shunt in place. This allows one's blood to flow OUT. Copiously. The nurse must work fast. She introduces a 20-centimeter (or so) catheter and threads it into the vein. Once placed to its base, the plastic shunt is pulled out and peeled apart and only the catheter stays in the skin and vein. The catheter hub is taped to the skin and the entry site is protected with a sterile, clear plastic covering. The tip of the catheter ends in a larger vein that is not likely to break down, so this kind of IV tends to last a while. This is what I have right now. Other options include a PIC, which is an even longer catheter which ends very near the heart and its placement has to be done in-hospital, as the final position has to be checked by x-ray. A fourth option is a port-a-cath, which requires actual surgery and is left in for years at a time, with only a small bubble under the skin betraying the location of the port, which is then accessed through the skin with very small, very short needles. This is a good solution if you're on IVs near-continuously. This document describes the types very well.

Getting the mid-line was quite an ordeal this time. The same nurse came out who did it last time (two years ago) and that was a pleasant reunion. It helps that she has my trust. Unfortunately, I offered up my left arm and previous mid-lines and untold numbers of blood test sticks have left the veins there full of lumps and scar tissue. The nurse couldn't get the catheter threaded. We decided to try a vein on the side of my arm. She chose one I wouldn't have, but I wasn't exactly watching her stick me, so I was surprised to feel the needle going in where she chose. Problem is, it was a very small vein, and she not only went into the vein, but right through it! So after 45 minutes, I was left with a sore left arm (and the second stick site is still tender and is bruised). I offered up my virgin right arm and this third time was the charm. Catheter threaded right in. My only worry is that now I've been having some mild aching up along the catheter and I can envision this fresh vein clogging itself up with scar tissue...I hope we haven't just screwed up this vein for good now, too.

Anyway, here's the part where I get to some concrete physical evidence. Before the Advair started and before the IVs, my PFTs (two weeks ago) were the lowest they've ever been. My best FEV1 was 27%. I was not surprised by this - I could simply feel what the numbers were making plain to the doctors. My weight was down, too, to 116 pounds. So we started Advair. What a difference! Inflammation going down...great.

A couple of days later, however, a Friday night, I had my first bout of hemoptysis, and I'm not just talking a spot or streak of blood in my sputum, I'm talking a lot of blood. My shock at seeing what I coughed up being composed of roughly half blood stopped me cold and I looked at it quite a while under the streetlight. For the next four blocks 'til I got home, I continued to cough up blood, quite a bit and now it was all blood. I coughed up a little more at home, and it all tapered off an hour later. All told I probably coughed up 15 or 20 cc of blood. Very sad. I knew I needed some advice so I turned to...the internet. I posted to a CF list and got some immediate response, re-assuring me that while I should call my doc soon, an ER visit wasn't necessary if (since) the bleeding had stopped. OK. I called my doc Monday morning and told her about it. I've had some spotting since then, but no major bleeding.

(It's worth noting that there are lots of people worse off than me; LOTS. A Steve on the CF list has only 18% lung function; several of those listers deal with hemoptysis regularly, or have had embolizations. And there are people close to me who have their own health problems that make mine look simple to handle, by comparison.)

And now the IVs have started. I've been on them for five days and I tell you, what a pain in the ass. Could be worse, though, I could be on a 4x day schedule instead of 3x day. I've done the 4x day schedule and the problem is you can't get enough sleep! But this schedule suits me fine. And it's neater than shit to be sitting at the tech table or at my desk at Insight doing an IV treatment. I think it's weird for people to see, but they're cool about it. If all goes well, I'll be done with these before tech for the dance concert in late March.

But the biggest physical change of all is a positive one: after weeks of not being hungry, I'm finally getting my apetite back! Hopefully I'll get my weight back, too.

And this brings me back to running. I have eight weeks to train up from scratch for a half-marathon. This is not impossible, I reckon, but it'll be a stretch. I'm not promising a half-marathon in Nashville, kiddies. But if I can get out next week on some warm-ish mornings and try to get in a couple of continuous miles... and gradually work it up to a 10-mile long run before Nashville, then I'll take a whack at it. Whatever happens, I do NOT want to do it like I did my last half-marathon.


Steve said...

You continue to amaze me! All the crap you have to deal with and STILL you push on like its nothing. You're definately an inspiration.

btw.. Im not suprized that the Advair is helping. Its a good drug ( very expensive too).
If you ever need any advise on respiratory stuff, contact me through my email.

I cant wait to hear how you do on your next race!

Danny said...

glad to hear you're getting better finally. it's been a long haul...

it sounds to me that you should concentrate on continuing to get better, and not worrying about running a half marathon in 8 weeks! I little bit of crazy enthusiasm is probably ok, but this might be pushing it. Just see how you're doing, and don't knock yourself if you can't do it.

Finally, even though I'm in the medical field, when you say pan-sensitive and pan-resitant, I think of pan-fried dumplings. Mmmm...

Brooklyn said...

Danny, I knew I could count on you for a laugh! Dumplings do sound good right now. My appetite continues to grow and today I've been eating as much as I could get my hands on.

Stephen, it isn't hard to keep pushing onwards when you've got no choice. While I may take Danny's advice to (continue) to let my body recover before over-stressing it, I also believe some short jogs a couple times a week for the next couple of weeks will help clear out some mucous and further sharpen my appetite. But thanks for the support!

yeon choi said...

Hey, Cris, It's Yeon!
I went and ended up coming here and read what you'd been through with your health probelm. I'm so glad that you are getting better, but gee... you made me worried. I know you are a strong man so I'll stop worry. :)

I was in Cambodia last week (I was having a 3 weeks of vacation there) and saw someone exactly like you! He was on motobike, so I couldn't really stop him... but I doubt it was you.

How's your new apartment and cats?

AddledWriter said...

Sounds like maybe you need a better doctor?