Another rock near another hard place

I have a new dimension to my continuously-expanding structure of CF care: yeast infection.

For the last five days, I've had very sore, cracked upper lip and roof of my mouth. At first I thought it was inflammation in reaction to one of my antibiotics, and that's what my doctor was afraid of, too. My upper lip felt and acted very much like a rapidly chapped lip - but this problem is localized, it's not over my whole mouth. So WTF?

After seeing a dermatologist yesterday, I now know that I'm dealing with a yeast infection. Now, yeast infections are nothing new. Anyone with athlete's foot, jock itch, or another feminine problem knows all about this. In fact, I've come to accept that one of the side effects of going on antibiotics is that I end up my mild jock-itch, easily taken care of with routine applications of Lotrimin. After the initial burning, it yields to a gentle warmth in the crotchal region and really keeps the itching at bay. Paired with a lighter, it also doubles as a handy method of killing zombies. A couple weeks after antibiotics, the jock itch will go away completely.

But I digress. Thrush is also a known problem when people go on antibiotics, so it surprises me that I didn't make the connection between my lip and mouth problems and yeast.

I've got some medicine now which, if nothing else, seems to numb the affected areas for awhile, but it will probably take a while to really work. In the meantime, eating is fairly painful and I've started choosing soft foods or letting things like cereal really sit in milk before eating. Even still, my mouth ends up quite sore. I never would have thought that my CF would affect what I can physically shove down my gullet.

Bunny Hop

Oh, what a difference a day makes.

If the Turkey Trot is the gateway to the winter running season, then surely the Bunny Hop, the Easter run, is the throwing open of the doors of the summer running season. In honor of the masses hitting the streets - and in deference to my own health - I went out for another run today. Been a long time since I ran two days in a row.



It wasn't a long run, but it was of significantly better quality than yesterday's. The weather was a major change and I can't tell if it helped or hurt. I wasn't cold, there wasn't any wind to speak of. On the other hand, I was overheating in mid-70s temperatures. In the middle of the first mile, I peeled my shirt off and that felt really, really good. (It's probably a good thing I didn't plan to go long, as I would have sunburned quickly, I think. My tan from last year is so gone that the paint manufacturers are using my belly as "reference white".)

After the first mile, instead of simply turning around, I trotted over another block, consciously extending my run; maybe making up a little for yesterday's shortage. I stopped quickly to buy a water. The look of bemusement and horror the other bodega patrons had as this sweaty, smelly, unshaven, shirtless, ugly, arm-wrapped runner stepped into the store and frantically looked for water was priceless. (Arm-wrapped: I keep my PICC line site and tubing concealed underneath a cut-off sock cuff at these times.)

The trot home was better than the trot out, since most of it was downhill, but I still had to take several walking breaks. I was not only trying to catch my breath, but also trying to take in some water. After my iPhone announced I'd crossed the two-mile mark, I strove to keep my legs moving and put in a good finish and almost managed a 10 minute pace for the last third of a mile.

After the run, I had to hook up immediately to meropenem to stay on schedule. When this is done, I need to take a quick shower to get the salt off, then go pick up laundry and some groceries. Got to finish grading midterms tonight and prepare for tomorrow's classes. Tomorrow will be a very busy day for me.

High Five!

I'm experiencing something new that hasn't happened on IVs before. My mouth and lips are incredibly sensitive. They feel chapped or injured. My lips feel like they're cracking though they're not. Edges of spoons feel like razors and hot liquids are intolerable. I don't know if this is a component of the Vancomycin reaction or an effect of the Benadryl used to counter the Vanco.
As for that particular reaction, I am desensitzing to the Vanco, I think. This morning I took only one Benadryl and though I slept through administering the dose, I don't recall getting the level of itchiness I would have expected. I'll do the same tonight, and then try going without Bendadryl completely tomorrow.

I've got class to teach this upcoming week and am trying to nudge my IV schedule to match up with that. I've also got all kinds of rehearsals to attend, too. Dance concert coming up shortly. Oh, well. We don't get to pick and choose when we get sick or when we need treatment.

So my run today was my first in a week. I can't believe how fast a week can go by when you don't feel good. Or even if you do! This run was brutal. Honestly, I only have runs this hard, this bad, a few times a year. The high winds didn't help, but more than that - I'm just out of shape. I am getting to be what they call "skinny fat". I can't go lift when there's a PICC in my arm, so that's out. I've got to get more exercise in and stop being so lazy about it.

I couldn't quite make it to my intended turnaround point today (though it was in sight about a half mile further along) and I didn't make it to my intended ending point, calling it quits a few blocks short. Still, the iPhone says I went more than two miles. I can certainly believe the slow pace it tells me! I walked large parts of this one. And the cooldown walk home didn't slow my breathing or heart rate any. It took about twenty minutes at home to get my heart rate under 90. I was also dealing with dry heaves. :( But it was bright and sunny and, in the wind-shadow of buildings, warm. And after the cold, grey days of late, that was awesome.

And I had a moment with a fellow runner. Now, I'd chosen a route that most runners simply don't follow - out along 2nd ave in the warehouse district between me and Lutheran hospital. I've written of this route before, with its run-down warehouses, broken sidewalks, even worse streets lined with old railroad tracks, and trash everywhere. But its about the only flat route I've got and I needed that change of pace. Seeing another runner out there is very rare - people usually stick to 5th ave, Greenwood Cemetery loop, or Prospect Park. So I'd already stopped my run and was walking home and just passing Costco when another runner came toward me wearing a very recognizable t-shirt - one from the Healthy Kidney 10K, which I've run many times. This guy looked comfortable and trotted along at about a 9:30 pace I guess.

We passed before I crossed the street, as he was crossing in between cars. On impulse, I threw up my right hand in the universal gesture for "hi five!" It took him a moment to recognize it, but then managed to get his own arm up in time for a messy hi-five. I heard him laugh as he continued on. And I walked home smiling, despite how bad my run went.

There's been so many times I've wanted to hi-five other runners. It's OK if you're cheering along a race route, but out on the road it may be weird. On the other hand - maybe we really do need to encourage each other during these unexpected encounters. It's a little recognition that someone else knows what you're going through, and thinks you're brilliant just for getting out there. It's a sign that we are not alone in a sport that is essentially the antithesis of team sports. That little bit of recognition and camaraderie goes a long way with me; I'm sure it resonates with others, too.

So if you're reading this, and you're a runner, and you got in your weekend workout on this blustery day, consider yourself hi-fived!

Feeling better

So I'm on my 2nd day of IVs. I'm feeling a lot better today than I was yesterday at this time: you could have run me over with a city bus and I'd have felt no worse. It was all the aches, pains, and fatigue of the flu without the fever or chills. But today, I'm about halfway back to where I want/need to be for right functioning.

I don't know why the first day knocked me down so badly. I've had all three of these medications before by IV. I've had the Benadryl before, too. But I was just so out of it. Except for breaks to start and stop my IVs, I slept 'til 3 o'clock yesterday! Today, I stayed awake through the morning IVs, lounging in bed watching episodes of Modern Family on Hulu.com. I'm kind of getting going now and it's almost 1 p.m. Well, better than yesterday I guess.

I'm still not going for a run, despite the beautful weather. Experience has taught me that until my PICC site feels "fine" again, the periodic swing of my arm as I run will only aggravate the site. Hopefully, I'll be ready to run tomorrow and that my PICC site will be a lot less tender. I'm getting some flexibility and usefulness out of that arm now anyway, so I have high hopes.

Coram called this morning, in the middle of my IVs and while I was making a string of phone calls to help facilitate a large donation to the Boomer Esiason Foundation. Coram wanted money. I can't blame them. I automatically put their statement aside until several months have passed from the dates of service, because it takes that long for them and insurance to agree to what I actually owe. I checked my bank account and was able to pay what I owe Coram in full. Well, there goes any hope I had of going to the movies anytime soon. Still, it feels good to get that bill off the table.

Another thing that gives me hope: as I wrap up my taxes, some of what I have to add up for the past year includes mortgage interest. My taxes got a little more complicated this year because I refinanced from a 10/30 interest-only ARM to a 30-year fixed, standard. As I punched numbers in from my statements to my financial software (I know, I know - I should have done that months ago!) I was pleasantly surprised. Whereas before I was paying a flat amount towards principal every month and paying X amount in interest, now I'm paying 10% more toward principal every month than I was, while paying significantly reduced interest - to the tune of a total monthly payment that is $500 less than what I was paying before. Each month I can see the numbers change: principal payment slightly higher, interest paid slightly lower. Very gratifying. Now if energy bills weren't so freakin' high, I might actually feel like I'm getting ahead.

A few things to chase down on Monday, since my primary doctor's office is closed 'til then (Happy Passover guys and gals!). I need to renew my referral to my CF specialist and I need to see the doc or a specialist about my nosebleeds. I went all winter w/out a single nosebleed and now I have blood gushing out my nose every time I cough hard and it takes 20 - 45 minutes to stop. That can't be normal. It makes me suppress my cough and that's not good, either.

PICC line in

I am a pretty princess.

Okay, not really. I am gowned and all ready for PICC placement. I was gowned and ready for close to four hours because the doctor was really, really late. However, I can forgive that, as he was super fast and super efficient placing the PICC. It was literally a five minute process by the time he got started.

The problem with processes like this is that while the actual procedure is fairly straightforward and uncomplicated and often quick, there's a lot of BS surrounding it and leading up to it. I had to be at the hospital by 9 for check-in and have my vitals taken and all that. I had to do the full gown thing, even though it's a waste of time taking one's pants off for a PICC line. They also wouldn't let me keep my cellphone either, which proved to be quite unfortunate when the doctor was running late. Next time, I'll make more of a fuss about what is and isn't reasonable for a PICC line procedure.

I had to have blood drawn because apparently the results from my blood draw two days ago hadn't been faxed over to the hospital. And, of course, the staff keyed in on my diabetes right away, so they had to do a blood glucose test (124, a little high). THEN I had a two hour wait while the coagulant test did its thing. (At least, they tell me that's what the wait is for.)

Finally, about 12:30, the doctor arrived and the nurses started to prep me and the local area with all the needed equipment.

I had a guy named Dr. Huntz Liu, a very professional, nice guy about my age. As he was running late, he got right to work. (I noticed he didn't apologize for keeping everybody held up, nor did he take time on pleasantries after the procedure, but scooted off elsewhere.) I did take a moment to explain to him that while I would prefer my left arm be used, it may be difficult due to scarring from previous PICC lines. I do most things needing strength with my right arm, so it is more natural and easier for me to have the PICC-handicapped arm be the left one. I also want to sort of reserve my right arm as scar-free territory for when it is really needed and there's no other options left. I explained all this to him and then allowed that if he had trouble placing the PICC in the left, he had permission to switch to the right arm. I didn't want to be stuck too many times, nor did I want to be there all day for multiple insertion attempts. The doctor suggested we could try placing another IV - a peripheral - and using that to inject contrast so he could visualize my vein better than he can with ultrasound. Hell yeah! And why hasn't that ever been suggested before?

So after getting strapped to the procedure table and all wired up with heart and pulse ox monitors, and having my arm strapped to a board to my left, the nurse quickly placed the peripheral. I was draped and tucked and generally feeling a lot like more major surgery than this really is, but I know it's all precautions against infection.

When everything was truly prepped, the doctor did his thing. I felt two stings of lidocaine and a few seconds later the doc says, "Ok, a little pressure now" and that's literally all I felt as he put the introducer in. (Introducers are big - and they hurt like hell if you're not numbed up.) He must have evaluated the vein w/ the contrast medium (there's a continuous x-ray going on) and knew exactly where he was going, because one stick was all it took. He VERY quickly threaded the catheter in. This I could feel. It is not painful, just uncomfortable and I'm glad he made short work of it. By the point where other practitioners would be starting to feed the catheter in, he'd already pulled the guide wire, verified placement on the x-ray monitors, and was stitching the base to my skin. Less than a minute later, he pulled the sterile drapes off from around the site; the nurses dressed it, including a new little antibiotic pad I haven't seen before, pulled out the peripheral, and I was on my way out of the room and out of the hospital.


This was VERY neatly done. As far as I can tell, no blood spillage; extremely quick; the dressing is about perfect, and I have a lot less of the residual soreness I'm used to feeling.

Still, I'm very tired. And after having had only one cup of coffee all day (after the procedure - can't eat or drink before it), I have a medium sized headache. I'm now waiting for the home nurse to come so I can do my first doses of my antibiotics: meropenem, tobramycin, and vancomycin. She has to add an extension to that little part dangling down in the picture; and somebody needs to be around while I do the vanco. Despite the Benadryl I'm about to take, I will have a reacting, and she'll need to be on hand to ... I don't know, call an ambulance or something if it gets too severe. Wish me luck!

One last thing: I grabbed that coffee and a muffin at the Dunkin Donuts near the hospital, right after I walked out. Having to dose for the carbs, I found a corner for some privacy, but there was someone else already there. He seemed interested. Turns out his little brother has been using insulin for many years. We talked a little about diabetes and diet and then topics turned to the MTA, Bloomberg, and the like. We must have talked like that for half an hour. It was nice, but ended with me excusing myself for a coughing fit.