Typing with Boxing Gloves On

Friday, June 30, 2006 | 5 comment(s)

I was inspired by Scott's post today to float a request for analogies / metaphors
A favorite movie quote:
Young boy: "That's not a metaphor, that's a simile. 'Laying pipe' is a metaphor."
Props to anyone who can name that movie.
/ similies for what it's like trying to "manage" or "control" one's diabetes. Scott quite nicely sums up many of our frustrations in trying maintain all the variables required to manually control a process that SHOULD be carried out at the cellular level.

On the spot, the first thing that lept into my mind was that controlling one's diabetes is kinda like trying to type with boxing gloves
Mittens might be a better analogy, and may imply a little bit more precision, too.

Scott's favorite quote about diabetes is:

"Diabetes is like being expected to play the piano with one hand while juggling items with another hand, all while balancing with deftness and dexterity on a tightrope"
- Marlene Less, 1983.

So put your creative hats on and let's here it in your words! How would you describe this ridiculously complex endeavor of manually controling a cellular process?

H(a)emoglobin Woes

Sunday, June 25, 2006 | 11 comment(s)

WARNING: The author of this post realizes that it is long, detailed, and embarassingly revealing of just how much of a freakshow
Ladies and Gentlemen!
Step Right Up!
Admission is FREE!
Don't Be Afraid!
Kids, don't try this at home!
he is. But if you feel as if you're ready to cash in your chips and click yourself away from here before getting to the end of the post, please check out some questions I have near the bottom that I would love to get some feedback on before you go. "We thank you for your support" (- Frank Bartles).

Ahhhh, the H(a)emoglobin
The Brits spell it "Haemoglobin" but in the States the 'a' is dropped. From here on out, I'll just use "Hemoglobin" but I wanted to give a nod to the folks over there on the other side of the pond. Oh and this is kinda interesting...(man, I love wikipedia!).
A1c Test (sometimes "HbA1c" or even shorter: just "A1c"). Whatever you call it, we are all familiar with it.
At Least…
We diabetics are certainly familiar with it, whether friends and family members (and thus some readers of this blog) are familiar with it, is another matter completely.

For those who don't know, the Hemoglobin A1c test is the 'gold standard' test of how well controlled one's diabetes has been over the previous 3 months. Below 5% is the normal, non-diabetic range, and while the American Diabetes Association suggests diabetics shoot for a reading of <7%, the American Association of Clinical Endocrinologist recommends a more stringent reading of <6.5% as the target for diabetic patients.

More Detail (just in case)
Hemoglobin are protein structures that are contained in your red blood cells. Lab tests measure how much glucose binds to these proteins. Because red blood cells are constantly dying and being created, the HbA1c test can give a measure of how much glucose one has had floating in their system over the lifespan of the red blood cell population (which is approximately 3 months). Since this population of cells is constantly in flux, HbA1c results are essentially a weighted average of blood sugar control. That is: about 50% of the reading represents the previous month's control and then 25% represents the previous two month's control, and the final 25% measures the previous 3-4 month's worth of control.

So I went to my endo appointment on Thursday morning and I got my test result back. As I wrote about previously, I was pretty anxious / excited about getting the test done this time 'round. In that post, I said I'd be "dancing a jig if I [hit my target A1c], and crying to fugues if I don't." Well, I have my result, and wouldn't say I'm dancing or crying, really. Instead I'd say I've got quite a salad of emotions about the dumb number. A partial list of ingredients would include: pissed off, confused, determined, depressed, and sprinkled with a little bit of happy, too (just for the crunch). Soooo... (without any further ado), my A1c reading was 7.1,
I know, I know...
This is a decent reading... a good reading, even. And I may be lambasted for complaining about such a score, and if so, I completely understand. I realize that HbA1c scores can be a sensitive topic (not unlike asking how one scored on a final exam or asking how much someone's salary is). And I've felt this way before too. When I've seen or heard people complain about blood sugars that bounce above 200 occasionally or A1c's that are in the low 6's or even the upper 5's I think they're crazy to be complaining and I get a little angry, too. But I think that largely stems from envy. But overall I'm happy for them, and I respect the amount of discipline they probably must exert to attain such great scores on a consistent basis. And so, I apologize if anyone reading this thinks that I have nothing to complain about, but I'm a wee-bit anal retentive and I've been particularly goal-oriented on this lately. Please excuse me.
and immediately after being told this, I vehemently protested: "But that just doesn't make any sense!"

Like I mentioned before, I've been busting my ass to maintain the best control I can (and I think that I have probably gotten to the best control that I ever have had). I've kept detailed records, tested my blood sugar many, many times per day, I've been eating the right things, I've been exercising, I've even lost some weight, yadda, yadda, yadda, etc., etc., etc., ad infinitum, ad nauseum. So beforehand, I was looking for a conversion chart between what my average bloodsugars have been and what I might expect for my A1c reading. I came across the following table in various formats and in various locations (though this one is lifted from the Children with Diabetes web page on the HbA1c test. And this table seems to originally come from a 2002 "Diabetes Care" article that analyzed data from the Diabetes Control and Complications Trial (DCCT) and I've seen the same table in numerous other places including ADA (which publishes "Diabetes Care") and NIH (i.e., reputable sources).

 A1c (%)    Mean Plasma Glucose    
From Diabetes Care - 26 (Supplement 1): Table 1

Based on this table, my 7.1 HbA1c reading indicates that my average blood sugar has been around 170 mg/dl. But based on the data I've collected with my glucometer, I again have to protest: "This simply cannot be!" Below is a table of data from my glucometer for the 7, 14, 30, 60, and 90 days prior to getting the blood drawn for the HbA1c test:

    Kevin's Average Readings    
   days       mg/dl       # tests       tests/day       S.D.   
7 145 145 20.7 65
14 151 270 19.3 67
30 148 563 18.8 62
60 150 1,141 19.0 62
90 150 1,658 18.4 65

So, a few things: my average blood sugars tend to be around 150 mg/dl (not great, but not awful, either). I test like a maniac -- on average about 20 times per day. And my standard deviation is in the mid-to-upper 60s (I believe I've read that one should be aiming for below 60 in terms of S.D. as there's a bunch of new research suggesting that the amount of glycemic variation one has may be more important than the actual average level in terms of complication risks).

I then took the HbA1c-to-Mean Plasma
This is important
So apparently when a lab takes a sample of blood to perform the HbA1c test, it filters out some of the blood first (though I don't know which parts or why) and only tests the blood plasma. When we prick our fingers, however, we are getting whole blood samples. The concentration of glucose in the whole blood sample is therefore slightly lower than in the plasma basically because the denominator is larger. Most meters these days do a quick internal calculation to adjust for this fact so that the readings displayed on your glucometers are in "plasma equivalents." (I think that almost all glucometers simply multiply your whole blood reading by 1.11 to get the "plasma equivalent").

Until about 6 months ago, I was still using the OneTouch Profile II glucometer. This might be the only meter on the market that still produced results in whole blood values (and in addition took 45 seconds to give up it's results (I really have no idea why it took me so long to upgrade to a more modern glucometer)). But I have actually had arguments with my endocrinologist about the importance of this matter when I originally started to notice a disconnect between what my average readings were telling me and what my HbA1c readings came back as. She basically mocked my concern and told me that there is no difference and that there are no meters that still use the whole blood measure -- two facts that are patently wrong and only a small portion of the list of why I need to find another endocrinologist (but that's a whole 'nother post).
Glucose table and did some interpolating between 6.0 and 7.0 as such:

 A1c (%)    Mean Plasma Glucose    
6.0 135.0
6.1 138.5
6.2 142.0
6.3 145.5
6.4 149.0
6.5 152.5
6.6 156.0
6.7 159.5
6.8 163.0
6.9 166.5
7.0 170.0

Based on this table and my glucometer readings, I was going into the test expecting a HbA1c result in the 6.5 range. 7.1? 6.5? What's the difference, right? (0.6). I know I shouldn't be upset about this, but I am. I even argued about it with my endocrinologist. Since then, I've been doing research on my own and reading medical articles with such riveting titles as: "Effects of Hemoglobin Variants and Chemically Modified Derivatives on Assays for Glycohemoglobin" and "Defining the Relationship Between Plasma Glucose and HbA1c." The later of which seems to be the original source where they analyzed average plasma glucose readings and statistically
Be Thankful
I originally intended to go over the linear regression coefficients and discuss their methods of calculating "average plasma glucose" but that would have required yammering on about arithmetic averages, weighted averages, the "area under the glycemic curve" and then perhaps some integral calculus and THAT would have been overboard.
compared them with HbA1c readings.

*************     KEY QUESTIONS     *************
So before I wrap this up, here are my questions for you:
Do your average glucose readings from your meter fit well with the expected HbA1c readings you get back from the lab (or from an HbA1c meter if you're lucky enough to have access to one at your endocrinologist's office)? Or do you regularly experience a disconnect between what you would expect your A1c reading to be based on what your average blood sugar readings have been?

To make a short story (even) long(er), I actually had a new blood sample drawn to be sent to a different lab on Thursday. In addition to an HbA1c test, I am also having a hemoglobin electrophoresis test done to see if I have any abnormalities in my hemoglobins that may bias my HbA1c test scores. I'll be sure to report back what I find out.

And so I'll wrap up this long-ass post with a selection from
Defining the Relationship between Plasma Glucose and HbA1c:

Several studies have suggested that, although intraindividual variation in HbA1c is minimal, there is evidence of wide fluctuations in HbA1c between individuals that are unrelated to glycemic status, suggesting that there are "low glycators" and "high glycators" (14–16). However, a recent study showed that when multiple observations per patient are used to minimize the effects of assay variation, the interindividual range of HbA1c results in nondiabetic individuals is actually quite narrow, <1% HbA1c (17). Therefore, for any individual patient, a consistent discrepancy between patient-monitored PG determinations and estimated HbA1c should be investigated; there may be other factors causing this discrepancy, such as improper meter use, laboratory error, a physical condition that alters red cell life span, or a variant hemoglobin interfering with the HbA1c assay method.

I hate... laser beams

Tuesday, June 20, 2006 | 3 comment(s)

So yesterday I had the laser surgery for my right eye. Overall, things went okay, I guess (it’s all relative). I wrote about the procedure in a previous post, and my experience yesterday was pretty much the same (in all the places that I mention "my left eye", just switch that with “my right eye”). The doc checked the left eye out before doing the laser on the right eye and said that it looked as if the capillary growth was receding a little (which is a good thing). I’ll go back in a few months to have them both checked again to make sure things are okay (at least for the time being) and no new capillary growth is popping up.

There was, however, one (additional) thing that I have to complain about. As I was waiting for my eyes to dilate I was able to eavesdrop on a conversation that the doc was having with another patient. Unfortunately he was telling her that she was going to need some invasive surgery for her retinopathy. And while (at first) I wanted to hear the details, it quickly became apparent that she was sobbing at the prospect of the surgery and potential vision loss. I then felt completely guilty for listening. Then, I was moved out of the waiting room to wait a little longer in an exam room for the doc to check my eyes just before the surgery. While waiting there, I was able to CLEARLY hear a discussion another doctor was having with the parent of a 36 year old man that had a melanoma in his eye and would likely need to have his eye removed. (I’m not sure it’s considered eavesdropping if listening is practically unavoidable).

Both of these conversations had me rattled, and a bit pissed off about the lack of patient confidentiality and consideration at the office. The least both doctors could have done was to CLOSE THE DOOR before having such conversations (as a courtesy to both the patient they are talking with as well as the patients within ear-shot in the waiting lounges or exam rooms). Had I not been so worried about my impending laser treatment I would have made a complaint, and may still do so the next time I go.

The title of this post ('I hate... laser beams')
Which, for the record, I don't
In fact, I think they're pretty darn cool. And I'm very thankful that a proactive and very effective treatment for retinopathy is available. Certainly seems much better than the alternative.
comes from a line in a Phish song that my friend, Kurt, pointed out to me after I had written to him about my first surgery. Not surprisingly, on my car drive to the first surgery I was playing Paul Simon’s “Boy in the Bubble” repeatedly. Are there any other songs out there with laser references in them that you know of? If so, let me know.

"Boy in the Bubble” By Paul Simon
These are the days of lasers in the jungle
lasers in the jungle somewhere
staccato signals of constant information
a lose affiliation of millionaires and billionaires, and baby
these are the days of miracle and wonder
this is a long distance call
the way the camera follows us in slow-mo
the way we look to us all
the way we look to a distant constellation that is dying in the corner of the sky
these are the days of miracle and wonder
and don't cry, baby, don't cry, don't cry

“Scent of a Mule” By Phish
Kitty Malone sat on a mule
Was riding in style
When suddenly, like the sound of a buzzard's breaking
Kitty felt laser beams being fired at her head
She said, "I hate… laser beams
And you never done see me askin'
For a UFO, for a UFO, for a UFO….
In Tomahawk County”

And as a side note...
Yet, definitely no less important
Yesterday was also my second wedding anniversary. I originally had the eye surgery scheduled for June 5th, but then the doctor had to reschedule and I wasn’t thinking too clearly when it got rescheduled to the 19th. I called back later when I realized what I had done, but the next available appointment would then be in July. Taking care of a visually impaired husband isn’t the most romantic way to spend one’s anniversary, I realize, but Megan was extremely understanding and took decent care of me while I recovered.

We did, however, get out to dinner on Sunday night to celebrate. We ate a fancy restaurant in DC called Buck’s Camping and Fishing. Thankfully, we don’t have a camera phone, and we weren’t taking pictures.

We basically split everything we had down the middle. Although, I think Megan thinks I cheated her a little on the portion size for my main dish -- I don't think I did, honest. I split it 50/50.

The meal was awesome:

* Green bean salad with roasted pistachios and goat cheese
* Beets with sun dried tomato pesto and pistachios

Main Meal:
* A very THICK sirloin steak with white sweet potato fries
* Wood-grilled shrimp and grits

* A “to die for” slice of flour-less chocolate icebox cake
* A “to die for” slice of flour-less chocolate icebox cake (we both wanted it)

I was pretty stoked when I got home and my blood sugar was at 127, and then an hour later down at 86. But two hours later (and still feeling pretty darn full) I was back up at 128 and had a hunch that I would continue to climb over night. Sure enough! I was at 234 at 2am. I took a 2.2u correction and what do I get? 287 at 7:30am. Great, just great. A bit of a downer after such a nice time.


Kool Thing

Friday, June 16, 2006 | 3 comment(s)

Following Kassie’s lead, here’s my list of 27 “pretty cool things" I’ve done in the 27 years since I’ve been diabetic (in approximate chronological order).

  1. Learning to tie my shoes (don’t undervalue the small things)

  2. Going to an amazing elementary school where I learned to love learning (how many people do you know that rave like this about their elementary school? It’s actually the only diploma I have hanging on a wall)

  3. Pitching in Little League

  4. Playing basketball in the street at our new house (out of Philly and into the suburbs when I was in 5th grade) with the older kids in the neighborhood (who I revered)

  5. Making the 7th grade basketball team (but was then cut from the 8th grade team ‘cause I wasn’t tall enough (boo hoo))

  6. Going to college and meeting an unimaginably great group of friends

  7. Realizing that fly-fishing doesn’t just have to be “something to do with Dad” and that it is a really nice way to spend a morning (or actually (and perhaps preferably) a really nice way to spend a late afternoon into dusk after classes when there’s an insect hatch going on around you and you’re actually catching rainbow trout with a size #22 trico pattern… ahhh, now that was nice)

  8. Becoming an uncle (twice)

  9. Studying in Oxford for a summer (though that meant that I had to skip a summer-long driving trip around the US with my friend, Adam, in his VW bus (which I still have some minor regrets about))

  10. Moving to Washington DC

  11. Landing a job with a prestigious public policy think tank
    I was told one of the reasons I got hired was that I had on my resume that I painted lines on parking lots as a summer job, and thus they knew I would be willing to do mindless, repetitive tasks. Whatever gets you in the door, ya know?
    and having the opportunity to work with many smart, friendly, helpful colleagues

  12. Falling in love with the woman in the office next door (one such smart, friendly, helpful colleague)

  13. Reacquainting myself with computer programming after being away from it for so long (I programmed my TRS-80 in Basic when I was in 6th grade, but then didn’t do any programming until my first job out of college)

  14. Living in a group house in Dupont Circle (a great (great!) neighborhood in DC) for 6 years with 9 different roommates (some of whom are very dear friends)

  15. Getting my Master’s degree (although going to school part-time at night with a full-time job during the day might actually be the antithesis of “cool”).

  16. Spending a month in Japan visiting Megan (that smart, friendly, helpful woman in the office next door who was then my girlfriend (and is now my wife))

  17. Finally buying a guitar for myself after years of yearning and playing other roommates/housemate’s guitars (and learning to make pretty sounds with it over the years has been nice too)

  18. Moving into an apartment with Megan around the corner from the group house (i.e., still in Dupont Circle – that great neighborhood I keep yammering on about)

  19. Traveling to Guatemala

  20. Meeting Ira on 17th street and opening us up to yet another great group of friends for post-college, and post-group-house life

  21. Getting engaged after a random Monday night that included a Spanish class, a kickball game, getting drunk and going dancing, a chipwich ice cream sandwich, and a chili dog

  22. Getting married at my elementary school

  23. Traveling to Costa Rica for our honeymoon

  24. Being with my Nana when she died (not really a “cool” thing but an important event for me none-the-less)

  25. Buying a house (in the suburbs (although, this can be (at times) rather soul crushing))

  26. Getting a dog (!)

  27. Starting a blog

And like Kassie says:
Is that a Velvet Underground song?
If you’re reading this, you’re tagged and welcome to play along. There's just one rule: Number of "cool things" = Number of years with diabetes.

It's Outta My Hands (err...Fingers?)

Wednesday, June 14, 2006 | 4 comment(s)

(i.e., the blood is with the lab now).

Now, it’s just a matter of waiting for the results. I’m very hopeful that I’ll hit my A1c target this time around. (And let me tell ya: I’ll be dancing a jig if I do, and crying to fugues if I don’t).

I’ve been working my ass off to get my levels as low as possible, and I really want to see that the effort is worth it. I’ve gone through basal tests, I’ve been eating almost the exact same breakfast and lunch everyday during the week, I test my blood sugar 12-20 times per day (but I’ve been doing that for years, now), I’ve been taking meticulous notes and keeping detailed logs, I've become acquainted
Honesty is the Best Policy
I was tempted to write "reacquainted" there, but to be honest, I have NEVER measured my food or kept track of the quantities of what I was putting in my mouth.
with measuring cups, measuring spoons, and food scales, I’ve started a blog,
Don’tcha think?
Starting a blog should lower one’s A1c, shouldn’t it?
I’ve been biking to work 2-3 times per week (and throwing in a few longer rides just for the hell of it), I’ve lost weight. In summary: I've been a "good diabetic" (honest). Oh, this better work.

I kind of get this feeling like I want to cut loose on my management for a few days after I have my blood drawn. Leading up to the trip to the phlebotomist I want to have my control as tight as possible (almost like I’m cramming for an exam). And then afterwards, I want to celebrate.
Go ahead, kid
Have that ice cream sundae, it’s unlikely to affect your next A1c reading at all.

I know it’s dumb, because I know the A1c isn’t the real test. The real test is everyday.

My New Hero

Thursday, June 08, 2006 | 4 comment(s)

I was at the Children with Diabetes Quilt for Life display in front of the Capital today. I walked by the display on my way into work this morning and found out that the ADA’s Call to Congress was going to be at 10am (certainly worth skipping out of work for an hour for). The speeches were heart-felt and motivational. Jeff Hitchcock, who started ChildrenWithDiabetes, and his daughter Marissa were great. After the speeches, I wandered around the display of over 500 quilts from kids (and families) with diabetes. I always feel like such a goober
"No More Rhyming Now I Mean It!"
"Does anybody want a peanut?"
A peanut? Yup: A peanut.
when I’m around folks at these events. I’m checking out who has insulin pumps on and trying to guess which kid in a family is the one with diabetes, but I rarely have the nerve to talk to anyone. Strange.

Anyway, there were some really great quilts out there (including two from the Diabetes OC: Amy’s and Allison’s) and I got a little choked up at a few of them.

But there were two that really stuck in my head and made me laugh.

First: Rochelle Biancardi. I chuckled when I read “4 FT OF PURE IMAGINATION” and “55 LBS OF RAW ENERGY,” but then I laughed when I realized she was wearing a tie dye t-shirt, a wide grin, and was holding a chicken under her arm!

And my new hero (I think I want to be this kid) is a 7 year-old boy named Kelse.
His quilt says it all:


You can check them all out here.

And then, on my way home from the office, I passed by the tent again as they were loading all the quilts into a U-Haul van. I stopped Jeff just to thank him and shake his hand. He was (of course) very friendly, and encouraged me to submit a quilt.

We shall see, we shall see...

Completely Disorganized

Monday, June 05, 2006 | 6 comment(s)

So I have my quarterly appointment with my endocrinologist at the end of this month. This means it’s time for me to go and get my A1c drawn. The usual deal is I get the lab request at each visit with my doc, take it home, place it somewhere safe where I’ll remember it so I can find it 3 months hence and go get my blood work done for the next appointment. This never happens.

Last Thursday morning I woke up early and decided it would be a great day to go run and get my blood work done before work. I was very excited
Yes, I'm a Freak
I mean, really. Who gets excited about a phlebotomist visit?
about going to get my A1c test done because I’ve been working my ass off to get below 7.0 for 6 months now, and I feel like I’ve been doing so well that this one might be the one where I hit my goal.
Well, actually
My goal is 6.5, but I'm aiming to get there by the end of the year. Baby steps, baby! Baby steps.
I was particularly interested in getting it done last week because I knew that I was going to be going out of town for the weekend
To Pittsburgh
For the in-laws' 40th wedding anniversary (which is a pretty impressive achievement (especially in this day-and-age))
and I’d be all off schedule and my control wouldn’t be as good as it is during the week or even as good as a more regular weekend at home and I truly believe that the A1c score is very heavily weighted toward what your control was like the previous day, the previous week, the previous two weeks, the previous month, the previous two months, etc., et c., & c.
This might be plagerized. I know I've seen David Foster Wallace use "et c." and "& c." in his writing, but I'm not sure whether he's tied them altogether like this before. Just thought I'd be honest.
(you get the point). So I was keen on getting it done before potentially botching
Sure 'nough
I drank too much and ate too much at the party and woke up the next day with a hangover and high blood sugars (sounds like a potential blues song: "Hangover and High Blood Sugar" -- maybe by B.B King).
up my readings and my averages with a weekend trip and a big party.

Unfortunately, my habits around filing medical records are abysmal. I do (at least) have a filing cabinet devoted to my medical records, but there is next to NO system whatsoever(!) within said cabinet. Literally, I have just a few random file folders where all my medical records go – from different doctors, from different mail-order pharmacies, from different insurance companies
I can’t tell you how many of these health insurance invoices I have. And I’m not entirely sure why I keep them all in the first place.
, from different years (it’s a ridiculous mess).

So I’m pretty sure that I made a conscientious decision NOT to put my lab work script in this black hole of a filing system so I could obviate the mad search for it (like last time), but then I couldn’t find the damnable thing anywhere in my house Thursday morning. And after a half-hour of searching the house and all the places I could think of that I would have considered safe and obvious places ("I'll put it here so I won't go through that again! Ha! Aren't I smart?!"), I just gave up and my excitement
Yes, I'm a Freak
I mean, really. Who gets excited about a phlebotomist visit?
(in case you'd forgotten) was completely deflated. So now I have a call in to have them send / fax / leave one for me at the office, but they haven’t called me back yet.

Then, just today, I found this story on a software package that helps keep track of all of one’s medical records. It’s produced by the folks at Thomas Jefferson University Hospital in Philadelphia. It’s free, and I’m thinkin’ I’m gonna try it out.
But I Must Admit
I'm pretty skeptical of all things 'FREE'.
It won’t necessarily help with the paper work, but hopefully it will bring some organization to this part of my life. It really is just so overwhelming, sometimes (on top of everything else).

In my frustration Thursday morning, when I got to work I placed an order at DiabetesExpress for an A1cNow test kit. Looked great: 10 tests for a little over $100, pretty accurate results (in just 5 minutes!), why doesn’t everybody have one of these? (I’m pretty sure I pay something like $19 for my A1c test after insurance, so $11 per test is a decent deal). But then I get a call from DiabetesExpress today inquiring about whether I’m a “professional” doctor, since it is only FDA approved for “professional” use. I’ve thought about lying, but in the end, I’ll probably call them back and tell the truth.

So I’m curious, does everyone else have to go through this process? I’ve heard that the snazzier Endos (i.e., “professional” doctors) have these A1c test kits in house and can have the results done between getting you weighed and your blood pressure taken and then sending you back to the waiting room for you to (um...well...) wait for the doctor call you back and then you can discuss your A1c results immediately. Does anybody have this luxury? The going to the lab a few weeks beforehand, isn’t all that bad (it’s certainly better than going to the doctor, then going to the lab afterwards and waiting for a call or a letter in the mail with your results and no ability to discuss changes), but it’s still a bit of a pain in the ass schleping there twice.

One Down, One to Go

Thursday, June 01, 2006 | 6 comment(s)

The basics are this: laser treatment for retinopathy sucks (plain and simple). It's a painful experience, scary as hell, and I have had some side effects from the procedure, though hopefully they are temporary. I definitely found, however, that of all the fear I had going into the procedure, the fear of the unknown was BY FAR the largest. I write this in detail because that’s what I hungered for going into the procedure – details on what to expect.

Laser treatment is usually done only to one eye at a time. My last exam clearly showed a significant hemorrhage in my left eye, so that’s the one we started with. The appointment started off like most any other ophthalmologist’s appointment: they called me back, a tech puts drops in my eye (only the left eye this time, though) to numb it , another set of drops to dilate the pupil, and please have a seat out in the lounge while the drops open up your pupils, etc., etc. Only this time, while my eye was dilating, I had to sign a rather frightening consent form mentioning potential risks of temporary or permanent(!) vision loss (not the most relaxing things to consider just beforehand). But the doc also came by once or twice while I was waiting to check whether I had any
Which, of course, I did
One question I actually asked was: “how does the laser know to stop and not continue through to my brain?” He didn’t really have a good answer for this, at least not to my recollection.
more questions about the procedure (which was very nice).

So, in general, I was expecting there to be a bit more precision in the procedure than there was. Something like: “Rest your chin here, press you forehead up against that, okay now we’re going to strap your head in place. Don’t move, your vision is at risk.” But no. The procedure involved me being reclined in a chair and him strapping on a helmet with the laser beam being fired from his
For some reason
He reminded me of Godzilla.
forehead. The lights in the room are dimmed to further dilate the pupil and a lens is placed on the eye to focus the laser beams that are to be fired. I think the lens is actually on the surface of the eye, but the surface of the eye is numb with drops, so I couldn't tell.

What those numbing drops do NOT do, however, is numb the back of your eye (i.e., where your retina is). So the procedure begins and he warns me that while most folks can handle the discomfort,
There is, however
the option to get a needle to get a local anesthetic, but this will then require a longer recovery period and the need to wear a patch over your eye for a day or so.
some can not. The laser was indeed bright and while I couldn't feel anything on the first shot, by the 5th shot or so, it definitely felt like someone was pricking me with a needle from behind my eye. Not a pleasant feeling, at all. Both eyes were watering and my ears were filling with tears. I could only stand 5-15 laser shots at a time before I'd need a brake from the procedure. Just a few seconds to catch my breath and to get some blood back into my white knuckles.

The doc started on the left side of my left eye and spent 10-15 min there before giving me a break. The lasers definitely cause
I remember thinking
"Hmm, so this is what it would be like to be blind in one eye," with a truly shocking amount of nonchalance and just pure inquisitiveness.
temporary blindness. Slowly, as the vision returns, everything is
Like looking at the world through rose-colored glasses.
pink. He told me to expect this. I asked him if the pink was due to bleeding, but he said “No.” Apparently, the laser used is an Argon-green laser, and it only destroys the green receptor cones in the retina. Since pink is the complementary color, everything is pink until your able to reach a new equilibrium with regard to the color spectrum. This takes about 10-15min.

He comes back after 10min or so and starts in on the right side of my left eye. At a few points he actually had to place a clamp to keep my eyelid open. And there was one time that a laser actually hit a nerve and that
Reminded me of two movies
A cross between "A Clockwork Orange" and "The Marathon Man"?
hurt like a bitch.

All in all the procedure lasted about 10-15min per side of my eye. At the end, the doc assured me that my left eye is now much better off than my right eye in terms of long-run vision loss prevention. He told me that there was no
In fact
I went to work the next day, even (although I wasn’t all that productive (but then again, my productivity had been taking a beating for the weeks leading up to the procedure as well)).
restriction on what I could do after the procedure and said that it was unlikely that I'd recognize any real changes in my vision. He also told me that the most commonly reported side effect was black floaters in my field of vision while the capillaries are shutting down and possibly leaking a little. He assured me that this is normal, should pass, and is nothing to be alarmed about. (yeah, right).

Like usual, my vision was pretty blurry from the pupils being dilated afterwards. There was still a decent amount of pain and a killer headache that I took 2 Tylenol for, and I went home and napped on the couch afterwards.

Side effects I have noticed

There are two major side-effects mentioned in all the literature on laser treatment for retinopathy:
These are EXTREMELY vague!
What does “decreased peripheral vision” and “decreased night vision” vision mean EXACTLY?! Will my field of vision narrow?! By how much?! Will I be able to drive at night?! These are the kinds of details we want!
decreased peripheral vision and decreased night vision. When I asked the doc about these, he told me that these symptoms generally only show up after repeated sessions of laser treatment (something that has never been mentioned in anything I’ve read elsewhere) and that it was unlikely that I would notice any changes in my vision.

While this wasn’t the case, the side-effects I’ve experienced have been relatively minor. As far as
And Remember
This is just my experience and the plural of anecdote is not data.
my experience, I noticed
But then again
I already wear glasses and things in my periphery (and thus outside my corrective lenses) are already blurry.
no change in my peripheral vision, but I have noticed some minor changes in my night vision.

A few days after the surgery (after the blurry vision started to improve), I checked out my bedroom while I was laying there trying to fall asleep. I noticed that the room seemed slightly darker when looking around with just my left eye -- kind of like it wasn't able to pick up as much of the ambient light in the room as my right eye. I don’t drive a lot, but last weekend I did drive at night for the first time since the procedure. And while I don’t recommend anyone drive down any expressway at night at 70 mph while closing one eye and then the other to try to discern any differences, that’s exactly what I did (and still arrived home, safe and sound (thankfully)). I am happy to report that I didn’t notice much of a difference at all, so I would say that any change in my night vision is rather mild and may even be getting closer to the same ability in my right eye as I get further away from the surgery.

There are two other side effects that I experienced that I didn’t find much in the literature on (but have after some digging) and both freaked me out pretty good. For the few days after the surgery (2-4, maybe), my vision was pretty blurry in the left eye -- but only in the distance. Essentially, my myopia seemed considerably worse. I was extremely upset about this at first, but by about day 3, things started to improve slowly, and I don’t think there’s much of a difference now (though there very well may have been a difference there before my laser treatment – I certainly didn’t check things this rigorously beforehand).

The other side effect I’ve experienced is some visual disturbances in my periphery. I think what I see would be described best as kind of like shooting stars when you’ve been hit in the head, or TV static, or just wavy distortions. Sometimes they’re pink, sometimes yellow, but most often, they’re just white. And they move kinda fast, and come and go kinda quickly. I notice them more when I move my eye certain in directions or hang my head down (like while reading, for example). I’m still experiencing these occasionally, but with less and less frequency. I spoke to a tech at the doctor’s office a few days ago and he told me that this is a common side effect. Some people don’t notice it at all, some notice it for a few days, and others notice it for a few weeks. He said basically there’s scar tissue building up where the retina burns were and that’s what’s causing these little flashes in my periphery. They should clear up when all the healing is finished. (I certainly hope so).

Other minor things I’ve noticed include a migraine headache (which I’ve never really had before) about a week after the procedure, and some sharp pain in the back of my eye (kind of like the original lasers felt like) if I bent over (though I only noticed this for a few days after the surgery – but then I think I just stopped bending over to avoid the pain, as well).

So, I've been a complete freak walking around winking and covering up my eyes and trying to compare and contrast my vision between my left and right eye for a two weeks now, and I’m driving myself crazy. I’m finally ready to just get the other eye over and done with. I originally had the right eye scheduled for Monday, but the appointment was cancelled and pushed back by two weeks (to June 19th).

I know this is pretty detailed, but going in for the right eye to be done will be immensely easier for me because (like I said above) the biggest fear was not knowing what to expect. I definitely think this information is more detailed and useful (at least I hope so) than those generic, cartoonish pamphlets they hand out at the office and not as clinical and obtuse as the research papers I've found on the procedure.