Please Pass the Salt

Monday Cycling Route: Research Park Location: Aggieland,...

Mon, 28 May 2012 11:33:00 -0500

Monday Cycling

Route: Research Park

Location: Aggieland, Texas

Distance: 10.3 miles

Average speed: 14.5 mph

Weather: low 80s and sunny

Number of turtle rescues: 1

Number of frisbee golfers: 3

Number of frisbee-fetching dogs: 1

Number of other cyclists: 5

I did not ride for the last week due to an old lady back flare up. Fortunately the rest time did the trick. Today’s ride was pain free.

Matt rescued a turtle crossing the road. I guess it’s turtle season in Texas because we see them on the road nearly every time we ride lately. As an animal lover (veterinarian’s son), Matt is always compelled to rescue them and move them somewhere safe. He’s such a good citizen.

Even with a heroic turtle rescue, Matt and I weren’t feeling physically in the best of spirits. He was really tired still from whatever stomach bug he had last week (not terrible as far as stomach bugs go, but enough to make him tired/run down).

I was not feeling great either with a terrible acid reflux flare up for the last 2 days. I’m sure the couple of extra cups of coffee I had this weekend traveling to/from my parents’ house and extra glass of wine last night (Matt bottled the 2nd batch of home brew; a borrolo) didn’t help. I’m thinking though that I may have his virus. Thankfully stomach bugs never hit me really bad, but I’m pretty wiped out after this bike ride.

Going to spend the rest of the day being lazy and eating bland food.

Air travel with cystic fibrosis

Mon, 28 May 2012 09:37:29 -0500

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.

Hooray! It's Friday!

Fri, 25 May 2012 12:37:02 -0500

The week has flown by fast. I have not biked since Monday because my Old Lady Back has been bothering me. Is it from biking commuting last week? From the air pressure dropping? Am I just old? I don’t know. Possibly all of the above. I just hope it simmers down soon because…

-We’re driving up to my parents’ house tonight for my little brother’s high school graduation tomorrow.

-And there are 8 days until the big family Disney World vacation. I’m excited. I’ve made my list of things to pack and am waiting eagerly to see if my airplane carry-on strategy will work.

In the meantime, the week has been busy: Matt was home sick one day, we had a new dishwasher installed, a friend had a PhD defense dinner party/celebration, and I’ve been doing some shopping for/sewing of birthday presents for my sister-in-law & 5 year old nephew.

I’m home for lunch and ready to tackle the afternoon just as soon as I finish these scrambled eggs and cup of espresso. Who says breakfast can’t be for lunch?

Body image

Tue, 22 May 2012 19:34:04 -0500

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.

Monday Cycling

Mon, 21 May 2012 21:13:58 -0500

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?

-We grew these cucumbers in the garden. Most flavorful cucumber...

Fri, 18 May 2012 13:04:14 -0500

-We grew these cucumbers in the garden. Most flavorful cucumber I’ve ever had. Could growing vegetables in our garden be the key to getting myself to eat more?

-I’ve bike commuted to work 3 days this week. The rides have been enjoyable and low stress and I always look forward to riding home. I think I have the snack situation worked out finally.

-It’s possibly related to ridding a different bicycle, but I have a hunch it’s not. I’ve been having weird joint aches again. I had them before my last round of oral antibiotics and then they disappeared completely. My hips, SI joint, knees, one ankle and both wrists have been painfully achy the past 2 days. Could be related to the bike I commute on (has a bigger front gear than my other bike). Hopefully the aches will resolve soon because the wrist pain last time was really annoying.

-Matt has been honored as his school’s graduation speaker this year. He was selected by the students. I’m very proud of him. He’s got about 2 weeks to write a speech.

-My little brother graduates from high school in one week. I’m feeling a mix of emotions ranging from really old to really proud of him. I’m 11.5 years older than him and it’s been such a great experience watching him grow up.

-Our dishwasher died. In my Earth Day post, I mentioned that it might save water to not use the dishwasher. A kind reader pointed out that the opposite is true: dishwashers (even my 20+ year old one) use less water than human hands could possible use to wash dishes. So now I’m shopping for affordable Energy Star rated dishwashers and debating whether installation is something Matt should attempt.

My bike commute today

Mon, 14 May 2012 19:19:28 -0500

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.

Bike commute check list

Sun, 13 May 2012 19:39:27 -0500

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?

Saturday Cycling Route: IGN-Straub-Koppe Bridge Location:...

Sat, 12 May 2012 21:02:03 -0500

Saturday Cycling

Route: IGN-Straub-Koppe Bridge
Location: Wellborn & west College Station
Distance: 16.9 miles
Average speed: 15.2 mph
Weather: 81, slight north wind
Number of horse farms: 1
Herds of cows colored like Oreos: 1
Flocks of geese chilling with cows: 1

We had company yesterday & today (Matt’s sister, her husband and our baby nephew). It was a fun visit, ending with Matt cooking lunch for everyone including his grandparents. After everyone left, we went for a ride even though we were rather tired from staying late last night and the lunch party. It’s been rainy the last few days, so we made the most of the sunny day.

This is the same route with the 2ish mile section of unpaved road and the horse farm we rode 2 weeks ago. I’m no longer going to call it a variation of the Dowling Loop (popular local route) since although 2 of the roads are the same, it doesn’t go on Dowling at all.

Each time I’ve ridden it, I’ve had a faster average speed. I’m getting faster and a little stronger on the hills. I was really, really winded today throughout the whole ride. We went faster on the first part so my legs were fatigued early on, plus it has been a more asthmatic day than normal. (It’s grass pollen time in Texas.) We stopped once about halfway through so I could rest a bit and visit with my horse friend. This picture is from the last time we rode this route, but the scene was pretty much the same today.

Wednesday Cycling Route: IGN-Greens Prairie-Victoria Location:...

Wed, 09 May 2012 21:47:33 -0500

Wednesday Cycling

Route: IGN-Greens Prairie-Victoria
Location: College Station & Wellborn
Distance: 13.3 miles
Average speed: 15 mph
Weather: 70s, cloudy, humid
Number of gnats I found stuck to my body afterwards: dozens
Most common wildflower: black-eyed Susan (pictured)

Matt and I had a bike date after work. We haven’t ridden since Sunday. Monday we had dinner with Matt’s grandparents and yesterday it rained (hence the lower temperatures). Felt good to get out and exercise. There were no interesting sights or interesting conversations today. Just plain riding.

I finish TOBI on Saturday. It adds a bit of time to my morning routine in a way I cannot—even as a mature grownup 30 year old—manage to incorporate into my mornings without leaving my house 10-15 minutes later than normal. I just need/want too much sleep.

Anyway, next week I will try bike commuting to work 2 or 3 days. When I first started my job 4 years ago, I solely bike commuted for almost the first year. Then I kind of got worn out/tired/a little run down/less healthy and it began to wane. I haven’t biked to work in well over a year since the attack of the Old Lady Back in the fall of 2010.

I’m ready now. I’ve been waiting til after TOBI is finished so I can work out a new routine that gives me enough time. It will hopefully include packing my clothes/lunch/etc. the night before, waking up the 20 min earlier as if I were still on TOBI, AND leaving my house 30 min earlier than “normal” time. My bike commute takes 20-25 min and I’ll need some time to cool off/clean up before I’m work-ready. I’m excited.

Interim phase 2 results VX-809/KALYDECO

Mon, 07 May 2012 07:48:57 -0500

Interim phase 2 results VX-809/KALYDECO :

Woo-hoo! I wish they had any Texas locations for their trials.

Sunday Cycling Route: Traditions Location: north College...

Sun, 06 May 2012 14:50:49 -0500

Sunday Cycling

Route: Traditions

Location: north College Station & Bryan

Distance: 22 miles

Average speed: 14.8 mph

Weather: 70s, cloudy, a few sprinkles

Company: Matt

Number of hills: 2

Number of ostriches: 2

Number of peacocks (and hens): 6

Number of cows with holes in their sides: 4

Number of anteaters: sadly, 0

Today was a great day to ride—slightly cooler and overcast. We rode through campus and a fancy golf course neighborhoods. On the northwest part of campus all the agriculture and veterinary stuff happens (hence the interesting animals). We stopped for a little break by what is labeled as an anteater pasture, though Matt says there has never once been an anteater visible.

There were 2 hills on the way back home through the golf course neighborhood. The first one was small but the second one was tough for me. Fortunately I had Matt cheering me on. The ride is my longest in a long time and I’m quite tired. I’ll probably sore tomorrow.

what was the name of the book you're reading? the one with the mayans and the cf and stuff? im just curious because i have a kindle too and nothing to read. (:

Sun, 06 May 2012 09:42:10 -0500

Stigma by Phillip Hawley, Jr. But you may not enjoy it much since I gave away some spoilers.

Saturday Cycling Route: MAN Loop Location: College Station...

Sat, 05 May 2012 20:08:59 -0500

Saturday Cycling

Route: MAN Loop

Location: College Station & Wellborn

Distance: 16 miles

Average speed: 15.8 mph

Weather: 86 with slight south wind

Company: Matt

Number of abandoned Mary Poppins umbrellas: 1

Number of turtle murder scenes: 1

Number of exotic deer: 4

Number of donkeys: 3

Number of times I was blasted in the face with a black cloud of exhaust while crossing a bridge: 1

Post-ride refueling: homemade burgers & sweet potato fries

Today’s ride was a salty sweat fest. I guess we’ve already left spring behind in Texas, though 86 didn’t feel all that hot since the humidity was a little lower than usual.

I haven’t ridden since last Sunday for various reasons, including being exhausted from the drive to CF clinic Monday, going to a banquet with Matt Tuesday, and general malaise/old lady back after wearing (rather low) high heels the rest of week.

The ride felt great. I love riding my bike. I’m feeling so much stronger than past years when I thought I was in great cycling shape. I’m setting a goal for a metric century ride (62 miles) in September.

What I'm reading

Fri, 04 May 2012 08:01:12 -0500

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.

What we've been up to lately...

Thu, 03 May 2012 15:01:00 -0500

Yesterday, we went to a friends house and roasted coffee,

enjoyed the beautiful evening, and looked at the moon through a telescope.

We’ve also been gardening. Here’s a picture of the whole garden:

Here’s a picture of the delicious lettuce Matt grew:

And our darling “senior” dog Sadie, in an effort to do something puppy-like and cute, hid halfway under the bed the other day. Just her front half. When we called her name, she pretended she was invisible in her half-hiding place. She did this for an entire hour. After awhile, we started to wonder if she was ok under the bed. It turned out she was stuck and we had to lift up the bed to free her. Under the bed used to be her favorite special hang out spot. Guess she forgot how to crawl out from under it.

Blood work results

Thu, 03 May 2012 10:12:15 -0500

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:

Ug…

Tue, 01 May 2012 14:27:58 -0500

Didn’t my doctor just tell me yesterday I’m basically really healthy? Yes. Yes she did.

And did I just cough up bloody sputum a few minutes ago? Yes. Yes I did.

1) Seeing blood in my sputum always makes my heart leap into my throat and makes me feel anxious.

2) It’s not very much. Just globs in the sputum from 4 out of maybe 10 coughs. Not like the mouthfuls of blood that won no intervention except hydrocodone cough syrup from the ER doctor in January. (Though the hydrocodone was totally worth it!)

3) Matt has a school award banquet thing tonight. This lung-bleeding better not get worse.

I just took some DayQuil I have stashed at work. The cough suppressant in it is usually pretty effective for me. I’ve been coughing a bit more today because I’m having some sinus drainage which is probably why I’m bleeding a little (the coughing, not the drainage). Hopefully the bleeding will stop soon. I’m so annoyed.

Yeah, I go to the Dallas clinic! I have since 1990. Prestige and Brown used to be my doctors when I was younger, I had Rosenblatt for a while, and now I have Dr. Jain- whom I love!

Mon, 30 Apr 2012 18:43:34 -0500

I went there for 22 years. Dr. Jain wasn’t there when I left but I know the rest! I miss Dr. P. the most. Such a nice guy.

CF clinic today

Mon, 30 Apr 2012 15:40:29 -0500

Matt went with me to CF clinic this morning. I always enjoy having company for the drive, particularly on a day like today where I was fasting for my glucose tolerance test. The drive that normally takes a tad over 2 hours was nearly 3 because of traffic. For the first 2 hours of the drive, I figured I could’ve been ok driving myself, but then the crankiness and headache set in and I was glad to have a chauffeur.

All in all, the visit was good. PFTs are stable, weight is good, chest sounded clear. I kind of thought my PFTs would be a bit better than last time because I’ve been working out a lot more and can really feel the improvement in fitness in my lungs, but I can’t complain with stable and good.

I talked to my doctor about my elevated fasting blood sugar (about 2/3 of the time with my home glucose meter) and my frequent crashes. Both she and the resident seemed to think I had nothing to worry about and that I’m wasting my time/energy/stress worrying about the fasting levels. And the crashes. Just change what I eat. I’m a little annoyed that these two issues seemed so trivial to them because they feel significant to me. My doctor seemed pretty confident that my glucose tolerance test would be normal and that I am healthy with high PFTs, no drastic changes and with nothing to worry about.

The scientist in me doesn’t like the idea of being labeled as “healthy” just because I have high PFTs (my lungs are apparently large for my size) and don’t culture pseudomonas (anymore). I work my butt off to maintain my PFTs (my doctor knows and always acknowledges this), which aren’t nearly as stellar as they were 5 years ago. I cough up green sputum daily, which didn’t happen a couple of years ago. I’ve noticed elevated fasting blood sugar levels for the last 6 weeks following an antibiotic course after two hemoptysis episodes (my worst ever; about 1/2 cup each time) in Dec/Jan. To me, it seems like my body is changing. And while I know this is par for the course with CF and there’s not anything practical my doctor can do about my blood sugar and chronic sputum complaints, I feel like I’m being a perceptive patient. Maybe it’s neurotic that I notice such minor changes or even care about them. Perhaps it’s because I’m 30 years old when these minor changes are occurring rather than 15 and can tack some significance to them.

In any event, Matt and I decided it’s a good thing I’m so observant and shouldn’t stop being so. There’s nothing wrong with collecting data (I.e., blood glucose levels). It might be helpful at some point. There’s not really any intervention I hoped to receive from my doctor today apart from maybe talking to the dietician about how to eat more consistently throughout the day (which didn’t happen I guess because I have no real symptoms warranting this?). I also wanted to express my concern about my fasting glucose and find out if it could be a harbinger for an exacerbation—since it was normal coming off oral antibiotics when I felt great with zero sputum. I expressed this concern but it wasn’t greeted with a pat on the back and a gold star for my deductive reasoning.

I sometimes think my doctor thinks I’m overly worried that I’m dying and am overreacting to small changes. That’s not the case at all. I know my disease isn’t progressing quickly and I have many, many more happy years yet to come. I just feel this overwhelming desire to do absolutely everything I can to make sure I have as long of a future as possible with Matt. I would regret it immensely if I missed any warning signs that lead to faster disease progress. I have the skills and knowledge to observe and understand my disease so I’m going to use them as best I can in my fight against it.

Sorry to seem dissatisfied with my visit and doctor’s response. It was a good check up and I was happy to have good PFTs. I really like my doctor and think maybe my complaints might be harsh, considering she deals with CF patients as her daily job and has done so for more than a decade at this clinic. It’s just frustrating that what seems significant to me is not clinically significant or is simply normal for CF.

If you’ve made it this far into my post, I congratulate you and thank you for reading. After my glucose test, Matt and I ate at the Cheesecake Factory in the Houston galleria mall. I love their avocado egg rolls. We realized that this was the first time ever that Matt and I had been to a mall together. How weird is that? After that, we stopped by a huge aquarium store that’s on the way home to look at the fish (tons of saltwater ones). Didn’t buy any but had fun looking. Now we’re home and a nap awaits me…