"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 jerrycahill.com 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.

i don't remember doing this

So I get an email from Brightroom: your Kleinerman 10K photos are online.

What?

What 10K? I don't remember running any 10K. Seriously, tho I rack my brain, nothing sooner than the Healthy Kidney 10K comes to mind, and that was seven months ago. So I go look at the pictures:





Nope, not ringing a bell. Clearly I was at this event, but when did I run this? Pre- or post-lung-distress? Well, it's obviously winter in these photos, and I really like the way I look in number 2 there, and from number 3 I was pretty obviously jogging as I crossed the finish line. So WHEN did this happen??

I finally broke down and scrolled through my blog archives and finally found this post and then everything became clear. How could I forget?! This was that tough, but pleasant enough 10K after which I met the blogging crowd. Wow...Brightroom is really behind.

And is it just me, or do I really not have much of a neck?

winter finally arrives

After waiting for four months for winter to arrive, it came today - in a big, big way. Heck, I even experienced my first "thunder snow" - I always thought that was a myth 'til now. Still working on the pictures from the camera, but here's one from my V3. This was taken in an average and unbiased section of snow. Poll error is +/- 3%.



As you can see, we got what in meteorological terms is called a "shitload" of snow, one step up the scale from a "buttload", which we previously dealt with in the great President's Day blitz of '03. This is not to be confused with a "metric buttload" of snow, which is a much smaller - and more concrete- measure, approximating the amount of snow one actually has to shovel to get his stoop and sidewalk clear. This makes me concerned for my "large" and elderly neighbors, who are at risk of suffering the "white death" - or shoveling-induced heart attack. How could anything so pretty be so deadly? (Most of my elderly neighbors seem to have family come over and do the job for them, so don't worry.)

I enjoy shoveling snow. I don't know why, but I do. I guess it feels like good, honest work on which nothing is riding but my own satisfaction. The city demands certain minimum standards of sidewalk shoveling, but I like to go above and beyond. This morning was my first time shoveling here at the new apartment and I learned a lot - like I have a great front area to dump excess snow easily, but that I also have to first dig upward out of my below-grade entrance. I also have an area of the curb where no parking is allowed and that is GREAT for ditching extra snow. Due to the overwhelming amount of snow, I only did one good clear shovel-width along the sidewalk, but that's still more than my neighbors managed.

Unfortantely, I am learning the hard way that perhaps some of my lung problem is just sheer cold. I had to stop and rest several times while I shoveled and I felt out of shape. But even later, just for a quick trip to the convenience store for a decaf coffee and some Bounce, I was walloped with a giant asthma attack, which eased up while in the store, but came on again full-force on the walk back. I really must be more pointed in my questions I put to the doctor. Perhaps, in addition to antibiotics, I need a dose of hookworm. On the other hand, I didn't have that level of asthma while shoveling...perhaps the nebulizers I did in between are responsible for making me more susceptible to a cold-related asthma attack?

In health- and snow-related news, ABC ran this article about snowshoe programs in the Northeast. Apparently, several high schools up here have quietly begun most of the country's 500 snowshoing phys ed programs to help combat childhood obesity during the winter. This is a very good idea! I've never been snowshoeing myself, but if I can ever get my lungs back on track and be an "athlete" again, I would very much like to learn and go on some trips. Snow makes me feel so alive!

Rob Lake to run London marathon

Don't rememeber if I forwarded this to you or not yet. Please please
help support Rob in his efforts! He is a Cystic Fibrosis runner who
has run several marathons. He raises money for England's Cystic
Fibrosis Trust. Someday we'll have something like that here....until
then, let's show our support, hm?

From Rob:
----------
Hey guys, ok Ill keep this nice and short!

As you all should know by now my friend Ash and I are running the
London Marathon (again), and raising money for the Cystic Fibrosis
Trust. This is of course, the charity responsible for bettering the
lives of CF patients across the UK, including me! So I am asking
each of you to put your hands in your pockets and make a donation for
us.

Many of you were incredibly generous last year with your donations,
but of course the battle is not over until we have found a cure for
this life-threatening disease. 3 people still die of CF every week
in the UK!

Ash and I will be running in fancy dress, and thanks to Susan
Crossley at the CF Trust, we have been allowed to run as famous
football team mascots!! Check us out! I will be 'Fred the Red' from
Manchester United and Ash will be 'Stamford the Lion' from Chelsea
FC. Both MUFC and CFC do fundraising for the CF Trust, and so we
should be guaranteed to get on the BBC!! The only problem is that we
are not allowed to talk, so any interviews will have to be done in
sign language!! Hahah!
You can donate in a number of ways:

Online, through this website (You'll need to copy and paste it!):

http://www.justgiving.com/robandash2006

In person: by handing me some money!

By post: Please make cheques payable to 'Cystic Fibrosis Trust', and
send to:

Rob Lake

50 Alum Chine Road, Bournemouth, Dorset

BH4 8DX

UK

Please give generously and help us find a cure. Thank you and much
love to you all,

Rob

_________________________________________________________________
Are you using the latest version of MSN Messenger? Download MSN
Messenger 7.5 today! http://messenger.msn.co.uk

update

I'm coming to realize that this blog is as much a journal of my lungs' health as it is of my running. Not surprising, since the two things are very closely related, eh?

Quick update: ze Septra, it does nuzink! (you have to read that in the voice of Atom Man from The Simpsons -- "ze goggles! zey do nuzink!) I have come to believe that the lab screwed up and sent the wrong person's results in my name back in January, so I've essentially been taking a sulfa drug that treats nothing I've got. The new sputum culture, I'm sure, will show a raging case of pseudomonos, which is what I usually culture. We'll know Monday. At this point, IVs are a sure thing, it only remains which two drugs I'll be on (two is standard procedure).

As for the lungs, they are not good. I am beginning to feel like my brief life as a runner has been nothing but a dream. The possibility of getting trained up for even a decent half-marathon in time for Nashville seems remote at best, but I know that after two-three weeks on IVs, I should be feeling better and have a brighter outlook. My first "big goal" once I can resume jogging is to get to three continuous miles. It's funny how that was the first big goal the FIRST time around, after no running for a decade. And that took six weeks. I only hope that, somehow, the body will remember and be able to train up a little faster this time.

NYFlyGirl posted pics of herself running the first mile of the Manhattan Half, so I went looking for mine. They're not bad, if a little dorky. Didn't seem like shorts weather to ME, dear lady!