my prematurity story,

So, yes, I am a giant dork [if that wasn’t already COMPLETELY evident], and I geek out about things.  Long story short, Jay mentioned in his post that he was a premie, and I was a premie, and I geeked out,  and then we had a short how many weeks early discussion, since that is what that situation calls for . . . and now his mom has been checking out some other posts . . . how cool is that? [Yes that totally called for that many ‘ands’. Yes.]

Really, this definitely calls for one of these:  HI JAY’S MOM! [Totally reminds me of when I was in high school and people’s parents used to phone them and we’d yell “HI [so-and-so]’s MOM!” through the phone while they were trying to talk. Usually repeatedly.  In the case of my friend Amber’s mom, it was always “I LOVE YOU, AMBER’S MOM!”].

I realize at this point on the blog, too, I have yet to actually mention my prematurity.

NICU picture 2, Weighing 3 pounds.  June '91

June ’91 – sometime within the month or so after I was born, weighing in at about 3 lbs, in NICU.

I was born 10 weeks early, weighing in at 2 lbs 13.5 oz. Like most premies, I had significant lung problems and episodes of apnea [stopped or incredibly slowed breathing] and required intubation twice [if I read the records right, they are kind of not fully legible], and had recurrent episodes of bradycardia [slow heartbeat], along with a heart murmur [which is still slightly present] and a severe patent ductus arteriosus — a congenital heart defect that causes abnormal blood flow to the lungs, and is common in premies because the whole physiology of gas exchange is different prenatal — that closed on its own, meaning that is a done deal.  I developed a staph infection, that caused sepsis [kind of like shock caused by an inflammatory immune response to the infection that affects the whole body… thank you Wikipedia] and joint problems (which lasted).  I also had diagnosed hearing loss [not an issue now] and cerebral hemmorage [common in premies . . . hey, I DO blame being a premie for making me weird, maybe this is an explanation! I also blame it for why I can’t do math.]

So that’s where I’ve come from, but how does it affect me now?

I could probably say that my prematurity doesn’t have that big of an effect of my life, simply because this is just how my body has always been, so I just don’t know any different.  That said, it has probably caused me to adapt in ways that I haven’t even recognized–though, I can share a few examples.

For instance, I always walk with people on my right side [and do this by habit, as one of my friends noticed when we were walking back to school one day in grade eleven], because I have extremely little vision in my left eye due to the retinopathy–glasses don’t help on that side, and all I can see are lights and shadows.  And, I really quite like seeing the people I am talking to!  My right eye is corrected with [very strong] glasses to be fairly normal, but not perfect. I think I have “floaters” in my vision field more often than I actually realize, because they have always been there [for example, I noticed them hardcore on Friday when I was out in the freshly fallen snow, because it was so freaking WHITE out there, but usually can ignore them pretty good].

Long story short, the thought is that my retinas were damaged because the blood vessels did not develop correctly, and thus became scarred [I am in school mode apparently, I have just used the world “thus”], and I am at increased risk for retinal detachment. Additional theory involves the fact that I was mechanically ventilated/on oxygen, which may have caused damage to my retinas (I think this is a pressure related thing, but don’t quote me on that).  I am currently evaluated by an ophthalmologist specializing in retinopathy on a yearly basis, and get to deal with the fun eye drops and that thing that beeps and measures intraoccular pressure. That is fun.*/sarcasm.  See also: this whole vision issue is very likely a contributor for why I don’t like playing sports involving balls potentially flying at my head or whatever, because I can’t see them half the time [okay, I don’t actually like playing sports in general. Except maybe, you know, hockey with people who are not super intense].  And I have not yet investigated whether it would affect my ability to get a drivers’ license, because I am not exactly interested (or perhaps I’m just not interested in them telling me no).

Regarding my joints, I think this has been the biggest of the remaining issues.  They do not cause me any pain [except the hip with insane overuse].  The joint issues only affect the right side of my body–my right hip, elbow and wrist are affected, but as far as I have realized [and compared with my left side], my ankle is fine.  Interestingly, I did not even notice my wrist was significantly less flexible than my left until a year or two ago [I can’t fully remember, but it may have been while I was studying types of movement for the biomechanics chapter of intro kin last year and doing all the examples while sitting in the public library.  See also: first paragraph].  As for my right hip, I am not sure the technical terms for it, but you know the whole sitting “criss-cross applesauce” bit? Can’t do that. Or certain yoga poses, if we want to make this applicable to my current life that does not involve any more criss cross applesauce.  If I remember correctly, that caused several awkward moments sitting on the floor in class/gym class growing up [“Sit with your legs crossed and hands in your lap.” “I CAN’T!” . . . yes.).  Thanks to the hip, my right leg is also shorter than my left leg, as my hips are not evenly aligned [lost points on my postural assessment during seniors lab last term on THAT, by the way].  As is likely fairly obvious, my left leg is much stronger than my right.  I also seem to have developed some kind of irregular curve in my spine due to this [also causing lost points on my postural assessment, dang it, and also questioning from my pulmonologist whether I had scoliosis.  I have not bothered to follow up on this.]

Prior to 2002, my right leg was 6.5 cm shorter than my left, and “corrected” by the addition of a lift to my right shoe, which was accompanied by kids constantly asking why I was wearing two different shoes [I have to give myself props here, I believe I was fairly patient explaining this 4,000 times to every single new person I met].  Additionally, I still walk with a slight limp (see also: reported by other people).  In 2002 [age 11], I had an operation done on my left knee to remove four growth plates and slow down the growth of my left leg to allow my right to “catch up” while I was finishing growing.  By 2004 [I think], I moved from the outer lift on my shoe to one that is inside my shoe [which now allows me to own multiple pairs of shoes and any shoes I want to pending they, you know, cover my entire foot], and therefore I typically only get the “You’re limping, are you hurt?” question now, and not very frequently.  Currently, the difference between my left and right legs is 2.5 cm.  I was followed by a pediatric orthopedic surgeon and x-rayed incredibly frequently, especially in the planning stages before my surgery, because it had to be timed so exactly to correlate with my growth to avoid the chance of the difference in lengths just switching out.  I believe I was discharged from his care when I was fifteen or so, and it was honestly a bit sentimental as he had followed me my entire life.  I remember him telling me “Well, Kerri, you were a very sick little girl, but you are doing fabulous”, and then freeing me. [He was awesome, by the way, he and my mom were basically on first-name basis and he made frequent-flyer jokes sometimes when I came into clinic, and often came through the back door to x-ray looking for us when I had appointments].

In turn, obviously the joint issues affect my athletic ability.  I run slow [and did so even before the asthma became an issue, although that may have been present longer than recognized], and definitely believe that because these anomalies have probably caused my muscles to adapt a bit differently, I definitely get tired easier [I often wonder how much the differences in range of motion affect the amount of energy required by my muscles in my legs, and in turn how this affects the asthma [can I take this moment, once again, to redirect to the first sentence, please].  I throw [and catch] left handed because that arm is stronger, so baseball is actually hilarious.  I golf and play hockey left handed [and by golf, at this point, I mean mini-golf. Though I keep saying I am going to try golfing, and also because since I joked so often about joining the golf team in high school, maybe I should actually try it. I have clubs, who wants to go?].  As for badminton and tennis, I think I am actually STILL confused which hand I play with.  [Due to all of the above, I am also fairly useless in volleyball as my arms don’t line up].  On a positive note, because my right arm does not straighten fully, when fully extended it is perfectly angled for an upper-block in self-defense type things.

Day to day, I think the biggest way my joint issues affect me is in putting socks on and tying my shoes. Seeing as these are obviously fairly critical activities, I’ve adapted for that.  Think about how you put your shoes on and imagine not being able to put your foot on the side of your opposite knee, and THEN when you think of just bending forward to put your shoes on, remember that one arm does not extend fully . . . and you will kind of understand what I mean . . . it is doubly tough with socks!  [I will fully admit tying shoes can still be tricky considering I am fairly impatient. I think the most frequent phrase my friend Tara said to me in high school was “Your shoe is untied AGAIN”, it got to the point where she just grabbed my leg and retied my shoes daily and finally got me in the habit of double-looping and double-knotting.  Simple things = big difference.]

Currently, my biggest day-to-day challenge is, of course, the asthma.  My care team has mixed feelings on how the prematurity may have affected my lungs, considering I didn’t develop asthma until I was sixteen.  My allergist has thoughts that there may be a correlation, whereas my primary care doctor and former pulmonologist did not. A respiratory therapist/asthma educator I saw a few years back believes that my asthma, or at least the way my lungs behave and PFTs look, is likely related to my prematurity [example: increased reactivity in my small airways].

At this point, the why doesn’t really matter as much as owning it does!  For me, owning it happens through understanding it, treating it, and doing my best at dealing with the stress that may come along with chronic disease effectively [stress = increased airway reactivity = not good!] and keeping my body healthy through regular exercise in spite of the exercise induced asthma, working at the nutrition thing [I’m definitely guilty about things like not eating till noon and sucking at eating the good stuff . . . for a vegetarian, I kind of suck at the vegetables aspect sometimes] and doing my absolute best to avoid picking up any gems [a challenge that involves lots of hand washing when I work with 55~ elementary school aged kids, as well as pre-schoolers, and too many incidents where I’ve seen university students walk out of the bathroom without washing their hands . . . and this guy] which can make my asthma much worse.

I currently take three control inhalers per day–an anti-inflammatory corticosteroid inhaler [Qvar] twice a day, a combination corticosteroid + long acting beta-2 agonist bronchodilator [Symbicort] twice a day, and an anti-cholinergic inhaler [Atrovent, which is another variety of bronchodilator that works differently than the beta-2 agonists].  This is in addition to my blue rescue (short acting beta-2 agonist bronchodilator) inhaler [aka Ventolin] as needed and before and after exercise, and Ventolin via nebulizer when I feel really bad [not too often unless I am sick, fortunately!].  It’s a lot, and that sucks, and it took so long to come to this combination that WORKS, but at this point, I DO feel healthy most of the time, which is something I couldn’t say for at least a year and a half after my diagnosis in 2008.  So whether that is linked to the prematurity, especially now that I have learned I have family history of asthma [my grandma was diagnosed at 75, and her dad had asthma], who knows, but it is the more significant of the things I deal with on a day-to-day basis.

It is a ton better than it was.  I remember all-too-frequent occasions in my first year of university fighting to make it through class, often half hunched over my desk, holding out till we were dismissed to go take my inhaler. I still have the odd class like that, but they are few and far between. (While I am very okay talking about my asthma when I feel fine, I really struggle with letting people see/know when I am not okay. The only times I can remember taking my inhaler in public are all exercise-induced things when I wanted to keep going [during races/that time I crapped out at the gym [I did not keep going that time, I think I freaked my friend out too much]/that time I was riding a half marathon on the stationary bike and I refused to quit before the 13.1 were done. I’d say about 98% of the time I do the inhaler in the bathroom to avoid people staring/freaking out].

Out of all of the above, the asthma is evidently what affects me most in terms of what I blog about and advocate for, because it wasn’t there fromt he get-go, and I’ve had to consciously adapt for it.  In the day-to-day, inhalers, spacers [AeroChambers] and peak flow meters clutter my bathroom [drives my mom crazy]. There’s pretty much a permanent inhaler bump from my Ventolin in my pocket, usually the right one [in case you cared to know].  Often, the other inhalers spread beyond being contained in the bathroom–I keep a Ventolin inhaler by my bed [because there is very little more annoying than having to wander around to find one on the rare occasions my asthma wakes me up at night . . . and not being able to find one is the worst!]–there is usually one in my backpack too, but that one seems to have been transplanted elsewhere [I really need to replace that one before lab starts and my classes move into the gym!]. If I go out for more than a few hours, the Atrovent usually tags along.

In exciting news . . . I am working at scheduling a trip to Pittsburgh in August to be a participant in a research study led by world-renowned pulmonologist Sally Wenzel called the Severe Asthma Research Program.  Though my asthma is tricky, it is not severe–I am wishing to join as a comparative participant and hoping to contribute so that 1) people don’t have to go through what I went through in trying to increase control over my asthma, 2) I can use my silly lungs for good and 3) HOPEFULLY learn some more about my own asthma!  More on that to come . . !

Back to the prematurity bit . . . it’s been one heck of a journey from the note in my NICU record stating “this baby is a sick baby”, to where I’m at now.  And even if it hasn’t been all positive, it definitely helps explain me, and helps me to see things differently . . . Who wants to be part of the norm, anyway?