Please Pass the Salt

In less than a week my family is flying to Orlando for a big family Disney extravaganza vacation. Flying is one of my least favorite things because it gives me anxiety flying with all my CF equipment and medicine.

Specifically, airport security makes me anxious because they always think my vest machine is suspicious and I have to unpack it, explain what it is, submit to a test to see if it has explosives residue, repack it, put my shoes back on, try not to be a nuisance to the other travelers in the now backed up security line, etc. And honestly, the vest is suspicious enough that I usually don’t get questions about my liquid medications (or my hand sanitizer or Chapstick).

Then I worry about there being enough space left in the overhead bins for my vest, which is always amplified by the flight attendants’ threats to check my $25k piece of medical equipment.

What makes me the grumpiest about flying and having CF is the fact that I must use all my carry-on/personal item allowance for medication and medical equipment. There’s no extra allowance with every airline I’ve ever used nor permission for early boarding simply so I can get space in the overhead bin for my costs-more-than-a-car medical device. I’ve asked and been denied several times. At this point, having a husband is a God-send, because even though he’s not legally allowed to speak for me or help me unpack/repack my stuff in the security line, he can claim/carry/lift/load/stow my vest for me as soon as I clear security.

Anyone have tips for air travel with CF? I have a doctor’s letter listing my medication/equipment that I’ll be carrying with me. I’ve also heard that pulmozyme/TOBI residue is likely what triggers the explosives test on my vest, so I’ll be giving it a good wipe down beforehand. Does anyone else worry that their freezy-packs for pulmozyme will get frowns/rejection by airport security, or is that me just overreacting? I think my anxiety is exacerbated by the fact that the airport we fly from (DFW) has the strictest security line (with grumpiest TSA workers, though Philly might be a tie) I’ve ever experienced.

I welcome tips, but going to preemptively say that leaving my vest at home is not an option I’m willing to consider. Being able to travel with it is the reason I forked over the money to upgrade my behemoth old machine for the cute, small one with rolley travel bag.

Last week, I made the mistake of going swimsuit shopping. I say it was a mistake because there’s nothing quite like feeling totally satisfied with your body’s appearance then having it instantly ruined like trying on swimsuits. It’s worse than shopping for any other kind of clothes in terms of destroying your self esteem.

I tried on swimsuits because I thought as a 30 year old, it might be time to throw in the towel on bikinis. I’ve been feeling like maybe I’m a little too old to show so much skin in public now that I’m 30. I know that this is likely because most 30 year old women who wear swimsuits in public places have a small child (or 2 or 3) with them and opt for the “mom” swimsuit both for its functionality and because having a baby often takes a toll on your midsection’s visual appeal. So yes, society’s social cues are telling me “not so much skin.”

I was on a mission to find a little bit more modest two-piece suit—a tankini—because I felt a little too old for a bikini and am not as slender as I used to be. I might argue that I’d LOVE my body 5 pounds lighter, but my CF doctor (and husband) will tell me the prudence of my current weight. And 90% of the time I’m completely satisfied with how my body looks…until I see it on full display in a dressing room mirror in a swimsuit.

After trying on half a dozen swimsuits, I decided I hated my body and that everyone would ask if I was pregnant if I wore ANY swimsuit in public—conservative or revealing. (I am not pregnant by the way.) So I went home and did something I nearly always regret but knew would be the best for my self esteem—I ordered a swimsuit online so I wouldn’t have to try on any more.

It arrived today. I tried it on and it fit. But today I didn’t feel bad about my body and felt like it was über-conservative. I think I will bring both my conservative new tankini and my old skin-baring one on vacation. Is this waffling self-esteem because I’m now in my 30s? Is body image a valid reason to wish for a CF cure? It’d be nice to not “need” to be heavier than I like just in case I need a weight-buffer if I get sick.

Route: new high school out-and-back
Location: south College Station
Distance: 6.4 miles
Average speed: 14.5 mph
Weather: 90 degrees
On my iPod: A Feast of Crows

Today I felt really tired riding and it wasn’t very fun. Matt and I rode 11.5 miles Saturday (shorter than intended; I was tired/asthmatic) and took yesterday off. Today I really didn’t want to ride, but I’ve been coughing up a lot of gunk today and exercise helps me clear it out, so I made myself go.

My quads and upper body felt like lead. I thought my upper body was sore from housework (silly, since I do it weekly), but eventually I realized it was probably from wearing my backpack when bike commuting last week. My back was a little uncomfortable riding today as well.

I’ve decided I need to stop bike commuting for a few weeks. I think carrying a backpack + the fact that the reach on my commuter bike is an inch or 2 farther + the larger front gear is putting unnecessary strain on my back and aggravating it. I haven’t had back pain or hip tightness for the last 2 months riding and it has returned after one week of bike commuting.

A big reason to dial it back with bike commuting is that my family is taking a vacation to Disney World in 2 weeks. An aggravated Old Lady Back will make me miserable with all the walking/standing at Disney. Then a week after we get back from the Disney vacation, we’re making our annual trip up to Door County, WI to spend a week on the beach at Matt’s grandparents’ cottage on Lake Michigan. I’ve been looking forward to a back-pain-free trip where I can enjoy the great roads and scenery on my bike in Door County.

Anyway, I’m a little frustrated but glad I recognized potential causes of the increased discomfort. Maybe an easy week will be the cure-all?

My bike commute was great! It was cool(er) this morning (73) so I only sweat minimally. I finished all my therapy and was out the door and at work precisely when I planned. All was well with the world…

…except I was hungry. Crazily hungrily. I even ate a bigger breakfast (scrambled eggs) and ate lots of snacks (salted peanuts, chex mix, dried berries/pumpkin seeds, chocolate chips, almonds, a protein bar, and a can of V8). And then when I got home we ordered Mexican take-out (my go-to high calorie dinner). I guess I need to double the volume of the snacks?

I felt really energized after my ride to work, and in spite of some unexpected Monday catastrophes (are they really unexpected on Mondays?), I looked forward to my ride home all day. Because biking is way more fun than working. WAY more fun.

What’s in my backpack:

-Bike lock
-Spare tube, CO2 cartridge, tire lever
-Wallet with ID, phone
-Front and rear lights
-Wipes for clean up when I get to work
-Deodorant, makeup, hairspray, comb
-Work clothes and shoes
-First aid stuff (bandaids, Advil, etc.)
-Lunch
-Double the normal amount of snacks
-Bottle of enzymes
-Nalgene bottle of water
-Salt tablets
-Glucose tablets
-2nd set of bike clothes for ride home
-Sunscreen

Am I forgetting anything?

I am reading a medical thriller book, which admittedly was free from Amazon’s Kindle store so I shouldn’t have high expectations for medical accuracy/plausibility. However, it is written by a doctor (a pediatrician).

I won’t go into details about the plot or even name the book/author in case you want to read it, but one particular detail annoys me: all the children with cystic fibrosis in a remote Mayan village in the Guatemalan jungle are dying when they receive a particular vaccine. Just the ones with CF.

What bothers me is the fact that the author thought it would be possible that there would be several children LIVING with CF in a remote village with no access to medical care. And more than ONE child? And apparently since one child’s parents also died of the same cause, I’m going to assume that the plot will soon reveal that they, too, had CF.

Ignoring the fact that the likelihood of this is pretty much zero, when one child dies of respiratory distress (from his CF), he seemed perfectly fine beforehand. Like, no tell-tale CF coughing. And his autopsy showed nothing visually out of the ordinary with his lung tissue (like, say, gobs of green mucus).

I guess it’s possible that these Mayan children had a mild form of CF that was not really manifesting symptoms yet and therefore no one knew they had CF in this village. And perhaps the dad of the one child was one of the small percentage of males with CF WITHOUT congenital bilateral absence of vas defrens so he was able to naturally father a child. But the unequivocal genetic test that took less than one day to show they had CF still gets me. The scientist in me says it’s unlikely the remote Mayan village in the Guatemalan jungle has had any commingling with the typically Caucasian genes that lead to the more common CF mutations. They likely would have a rarer, more difficult to find CF gene. And the results wouldn’t be conclusive a day later when searching for 1500+ mutations.

Ok. Getting off my soap box and back to reading. I’m still really enjoying the book despite my scientific and personal skepticism of the role of CF in the plot. It’s the writer’s first book. It has all the hallmarks of someone writing a novel about how exciting they wish their life as a pediatrician could be—starring a brave but ruggedly handsome pediatrician with Navy SEAL training. Its probably the same way I would write my first novel.

P.S. I called something related to CFTR a few chapters in as the cause of death. You can just call me House, M.D.

I got the results from all of my blood work from CF clinic on Monday.  I do not have diabetes (hooray!).  My fasting glucose was 90 and my 2 hour was 54.  I’m a little perplexed because it was 109 fasting when I left to drive to CF clinic and then 3 hours later (while still fasting) it was 90.  Also I tested my 2 hour glucose myself after I got in the car before eating anything and it was 75.  Maybe the home glucometer is not very precise or maybe venous blood has different glucose levels than capillary blood (from your finger)?  I think I’ve read that somewhere before.  

Of course, it also would come as no surprise to me that my body would simply act “normal” when being scrutinized for new symptoms.  You know, the “I promise this happens everyday, but for some reason it’s not happening right now” when I’m on the exam table being examined by a doctor.  It’s a funny trick my body likes to play on me: make everyone to think I’m perfectly healthy and simply a hypochondriac.

All the rest of my blood work was normal, except my vitamin D level.  It was 28 ng/mL (low is anything less than 30).  My doctor decided to supplement with 50,000 IU of vitamin D once a week.  Anyone else take this?  It’s supposed to be a single-dose tablet you take once a week.  I’m curious why it’s a single high-dose rather than a lower dose you take every day.  It’s supposed to be a chewable tablet.  It’s not covered by my insurance, but the one-month package is fairly affordable (~$15).

From what I’ve ready online, this is the normal protocol for CF.  Hopefully this will help.  I’ve been getting A LOT more sunshine the last 2 months from riding bikes and I figured the level would be up from last October but it was down.  The vitamin D level is supposed to be representative of the last 2-3 weeks, since that’s the time it takes to break down in your body, so it’s obviously not because I am getting too little sunshine.

I was reading up on CF and vitamin D yesterday and it turns out that there are numerous (and not fully understood) reasons why people with CF have lower vitamin D levels:

1) reduced absorption from diet due to pancreatic insufficiency (even when taking enzymes),

2) decreased metabolism of precursors into the active form of vitamin D,

3) reduced storage of vitamin D in the body due to decreased amounts of vitamin D binding protein,

4) generally reduced amount of body fat to store vitamin D, and

5) generally reduced exposure to sunlight due to being ill or taking medication that makes CF patients sunlight sensitive.  

(International Journal of Endocrinology, Volume 2010 (2010), Article ID 218691, doi:10.1155/2010/218691; http://www.hindawi.com/journals/ije/2010/218691/)

I guess it shouldn’t be surprising that I have low vitamin D levels with this much stacked against me.  I’ve never had low values before, so I’m guessing it has something to do with either disease progression or increased infection load in my lungs.  I wonder if this has anything to do with the way my blood sugar has been behaving the last few months?  I would imagine that if my immune system is working harder in my lungs, then the rest of my body is working harder as well, which might stress my pancreas and get the wonky insulin responses I’ve experienced (frequent crashes and slightly elevated fasting glucose).

I also liked that this article had guidelines for how to treat different levels of vitamin D deficiency in CF patients based on age.  I always appreciate the fact that CF doctors from various hospitals and countries confer about what is the most common and effective treatments for various CF-related symptoms.  It is comforting as a patient to both know that whatever I’m experiencing is common for CF and that there is a set plan of action to remedy it.  I’ve found articles with guidelines about what to do for hemoptysis, pneumothorax (thankfully have never experienced this), diabetes, and now vitamin D deficiency, just to name a few.

And now for funsies, here is a picture of my dog Sadie: