advocacy / health + fitness / health advocacy / life / wellness

the aftermath: B[e] positive. give HOPE.

• by kerri

One year ago today, I was in the emergency room receiving a blood transfusion.

A year ago Tuesday, I received my final blood transfusion of 2013, following surgery that [finally] removed the uterine fibroid that had repeatedly caused my hemoglobin [and blood volume] to drop, leading to the 10 units of red blood cells I received in 2013.

This coming Tuesday will be 365 days after I went from crashing in the emergency room, being taken to resuscitation for hypovolemic shock and rapidly being infused with IV fluids, and then into surgery. And it’s a day I am trying to reclaim as my own. Nearly to the hour of when I was taken to resuscitation, I will be once again on the donor end of the process for the second time in my life. And now I don’t just want, but need, to be on that other side again. To bring that hope full circle. To reconceptualize that surreal feeling of knowing the only reason you might live, is because someone who has no idea who you are or what potential there is for your life if you life—when you live—wants to be the difference between hope and the alternative. I need that day to no longer be about me, no longer to be about that I lived, but be reminded B-postive is far more than my blood type, it’s my nature—and because of these things, someone else will experience hope.

As difficult, as messed up as last April through September were, in many ways, it was nearly as hard as the after has been. And once I make that first blood donation, take that first step, I move forward into further reclaiming my life. The first year is a year of waiting—the aftermath is always about waiting. This time, there is less for me to wait for in anticipation. Unlike 2013, a year at risk of abandoning every plan because maybe my body had other ideas for which there was no plan, I was able to embrace 2014. I actually started embracing 2014 in December, when I finally started getting my head together following the aftermath of my five months of hell—which took two months in itself. I think this is probably a process that, though extremely variable in speed, is probably true for most blood recipients: whether you are receiving blood because of “pure” anemia, or cancer, or following a traumatic injury, or any other number of conditions, the aftermath is similar—we remain in limbo, waiting for a potential sign of recurrence, or adjusting to life as it continues on a totally different path than anticipated, yet we owe the fact that we are alive to a person or people we can usually not thank ourselves.

My limbo, is not knowing what’s going on inside my body: an impossibility without medical imaging. I had a follow-up pelvic ultrasound done in early July. I spent a bit over a week, part curious and part agonizing, about the results. I phoned Alaa’s office—Alaa, who had taken me as a patient when my own primary care doctor refused to refer me—and said it was okay for his staff to leave the results on my voicemail. They actually did. July 14: “Dr. Awadalla said it was an excellent report, only a tiny 1.2 centimetre fibroid noted—otherwise a very good report.” That small fibroid, dependent on its location, could be where this story started: or, it could stay that size for years, and remain totally innocent. I am now simply trying not to think about it and live my life—even more true now after phoning last week to figure out the plan. As I anticipated, I simply continue what I am doing. I am not going to get to come off of oral hormone treatment (the inappropriately titled, in my case, birth control pills) anytime soon—I could be on these pills at least another 20 years if nothing changes, and as backward as it seems, clearly I hope this is the case. Yet, if anything does change, I go in to see him right away (and I’m sure they will get me in right away—they called me twice last week to tell me what the plan was, and the second time was at 7:12 PM) and we discuss probably putting a hormone intrauterine device in (specifically, the Jaydess IUD) to, I assume, better target the hormones. So, some of the lingering anxiety has been eased, because I know that getting taken care of isn’t just a front anymore—I know Alaa cares, like all doctors should. The psychological aspects of much of my experience in 2013 is far more of a burden than the physical aspects are: doing what I can, having a team that engages with me as they can to address me as a whole person, is what makes the difference between using the (sometimes hidden) gifts contained in my transfusions, my team, my experiences… and wasting them.

And in this, also, is my hope. The hope that is only alive in me, because I made it through 2013, because of people. 

If you are an eligible blood donor, please consider donating blood with me on Tuesday, like my friend Heather (who is not even in the same country as I am, so no excuses :]), or any day soon. If you are not an eligible donor, consider volunteering at a nearby blood donor clinic for a few hours: you can still make a donor’s day by being that person to hold their hand through the needle insertion, or being the awesome person hanging out with the juice and cookies afterwards, or providing a financial donation to support the work that organizations like Canadian Blood Services, Hema-Quebec, and the American Red Cross do to help people… like me.

I’ll even buy you a cupcake next time I see you.

Since there are few other ways I can show my appreciation of your gift to others—because that gift is far beyond time or blood or money–

It’s hope.

adventures / advocacy / friends / health + fitness / health advocacy / life / on the road / social media / stuff bloggers do / wellness

Tour de Good Things: People. | #medx 2014

• by kerri

The Tour de Good Things was a way i could summate the crazy journey I took to culminate August and begin September—both on an extremely high note. It has been nearly impossible to come down from the high that begun prior to Medicine X 2014 at Stanford University [disclosure], especially since the journey encompassed 7,227 kilometres (or about that). The last Thursday in August, I got into a car with a 60L hiking backpack of necessities and a drawstring backpack of medications, my only “prepared” travel document being my passport, and left home for 12 days. I arrived back into Winnipeg by plane last Monday after a red eye flight via Minneapolis—my initial destination.

There are many posts in here waiting to be written, and a video to come. But as many, many others have summated, the power, the magic, the amazing of Medicine X is in the people: This is a theme that would cover the entirety of the Tour de Good Things.

Minneapolis.

This kid (my cousin, Dean) headed down to University of Minnesota to start becoming an engineer of the probably civil variety, not the train variety [though, train engineers are probably also very civil]. So thanks to him I got a really long ride to the airport.

I also had grilled cheese and an awesome conversation on the parallels of asthma and T1 diabetes with these lovelies, Scott and Heather.

SFO. All over the East Bay. Santa Cruz. Davis.

My awesome aunt, Linda, and my grandma dropped me off at MSP after a 4.5 day drive to the airport […okay, the airport truly is only 8 hours from home. Not that that’s close.] and a four hour flight, I hit ground at SFO and was swept up into my “Cali-bestie” Steve’s truck, where (after picking up pizza), I FINALLY got to meet his long time partner and now husband, Doug (finally. On my third visit to the Bay Area—third time’s the charm, right? Doug is, of course, to a tee of how Steve describes him, and a total sweetheart just like Steve). We headed to Santa Cruz the next day, and San Jose where I finally got to meet his mom, Claire, his sister Sheree, and Sheree’s husband, Dan, who had us over for lunch on Monday.

The next day we headed over to Davis to get Steve’s new bass set up by a cool dude named Harrison.

San Francisco.

Steve drove me out to SF on Wednesday [because he is the best] to ensure I made my connection with my friend Carly (whom I met at MedX in 2012!) at the Twitter building. Carly’s friend Samantha was [at the time] working for Twitter, and had invited Carly for lunch—and opened up the invitation to any of Carly’s friends who wanted to come, too, which was beyond awesome :). (Samantha on the left, Carly—our link!—in the middle :].) Thanks, ladies!

Carly and I made a brief stop in Japantown after lunch and our tour around Twitter with Samantha, and then headed for Palo Alto. Not long after arriving, we had a spontaneous MedX ePatient gathering by the pool—meeting, and reuniting, with a lot of kickass ePatients—friends.

Carly and I (left, of course), [fellow Canadian!] Annette, Liza, Meredith, Dee, Marie (from Ireland!) and Michael (from England!) at the Sheraton. (Thanks to the Sheraton team member who ran out to take this shot for us!)

The next day, the fun really got started when Dr. Larry Chu [the beyond awesome MedX Conference Director!] introduced us to the Selfie Stick [here’s a professional picture (source) of Leslie, Emily, Karen, Rachel [TEAM CANADA!], myself, and Nikki selfie-ing with a selfie-stick on pre-conference workshop day!]

Of course, Ryan had to give it a go once we hit MedX full-stride—he had to make himself short for me so that a) I could adequately put my arm around his shoulders, and b) because he is too tall and was blocking the world medicine :).

No selfie stick for Brett and I, though (…everybody is SO TALL). He yelled “Oh hey, it’s Kerri!” in the corner right by the selfie station, and then we hugged, and I was like “okay we need to selfie so we don’t forget!” :]

We don’t always selfie in front of the selfie wall—sometimes we selfie in front of the gold badge door. Not only was Devon, below, a hit among the crowd at MedX, I was super excited to find another lunger on the scene [I mean, asthmatics DO hide everywhere, but… they hide].

Devon spoke on a panel about “the non-smartphone patient”, and has COPD. And, though he seemed adamantly against it before I showed him everybody tweeting his quotes, I did get him signed up on Twitter!

My super sweet roomie, Karen, and behind us, her poster presentation on the metaphorical dance that is chronic illness. Karen is a sport psychologist from Mexico and is generally amazing, so we never had a shortage of fun things to talk about :).

And on the subject of roommates, my 2012 roomie, Kim, and I—clearly in the club, and not at a medical conference. #ClubMedX

And, Miss Zoe Chu. While puppy, and not people, she lovingly made MedX granola for me and we had selfie times, so she clearly belongs on this list :].

Joe from Eli Lilly’s Team of Good People and Awesomeness (aka Lilly Clinical Open Innovation) and I—we look less like a painting in person. Probably. 🙂

And, Jerry from Eli Lilly, who was in the elevator on Thursday morning before Partnering for Health when a bunch of ePatients yelled my name and hugged me as I got on the elevator. Except we didn’t know we were supposed to know each other yet, and then he sat down beside me at Partnering for Health and identified us as the people from the elevator and said he was wondering if we were Medicine X people. Because I am all class, I was like “Yeah, we were the people yelling and hugging in the elevator—did you feel left out?! Do you need a hug!?”—he accepted this crazy Canadian’s hug, so we are clearly meant to be friends. Also, he’s awesome. And broke into a presentation during Partnering for Health when all the patients were very confused on Twitter.

Alan, Britt, Leslie, myself and Julie (Photo grabbed from Britt via Facebook!)

Sarah—one of the awesome ePatient advisors—with her CANADIAN SCARF, Rachel and I, after the closing ceremony of Medicine X.

And below, Britt (on the ePatient advisory team), Marvin—who is super sweet and I didn’t get to connect with nearly enough! :)—Rachel and I. 

And, my own ePatient advisor and friend from 2012, Chris (he’s laughing about attempting to hug me with the giant hiking backpack on)—just before Joe (below!), Marie and I headed to the airport (where I almost lost my phone and Joe totally provided an amazing Joe-hug to alleviate my stress, and told me how I could get the Delta people to bring it to me to avoid having to go back through security, since I’d left it at the check-in kiosk). 

These people—and ALL the people I met and interacted with at MedX

(I can’t even source those photos anymore :])

—are not the entirety of the story of Medicine X: but they are the part that matters most. As are the people that preceded my arrival for Medicine X to my own part of the journey, and the people who engaged in #MedX via Twitter: WE belong here.

(Photo of photo cred to Joe Riffe)

And here isn’t always a place: often, it’s a state.

And I love each and every one of you, and I hope our stories continue to connect in a way that makes a difference: Remember to not lose sight of where you were—where we were—hold on to that feeling.

We’ll change the world together.

advocacy / friends / health + fitness / health advocacy / life / social media

stanford #medx: from your couch!

• by kerri

Stanford Medicine X is “a medical conference for everyone”.

Everyone includes a lot of patients—including myself, and people like my friends Kim and Carly [and many others!] who also attended #medx in 2012 and will be back this year.

Cherise, Kim, Chris and I in 2012!

More importantly right now… everyone includes YOU—or, anybody who is chilling at home on their couch, or at their kitchen table, or anywhere there is internet, thanks to the Medicine-X Global Access Program! Through the Global Access Program you can join the main stage fun of Medicine X, check out how technology is evolving and changing healthcare, and how that is becoming more and more accessible to both patients and care providers*. Med-X is taking place from September 5th through 7th [with workshops happening before as well].  And, it’s free! [I know right?! Free is my favourite price, too]  If you’ve never attended a conference virtually before, Carly is a master: she has even written an amazing virtual conference attendance how-to guide to help make the most of your experience.

Remember: Medicine-X… is for everyone. Everyone who participates in Medicine X — whether in person or online — is there for similar reasons: We believe our stories can make a difference; we recognize the potential technology has to improve healthcare—to improve patient outcomes; to change the way we think of–and manage–our own stories that involve chronic disease or another circumstance that has caused us to more deeply invest in healthcare; in changing our own outcomes and interactions within our care. And we all believe that we can be part of a bigger story, where the patient truly becomes the centre of care—not the system.

I guarantee Twitter will be on fire, so if you’re watching from home [or work… Not that I’m encouraging that :].], ensure you jump on that before the conference if you’re unfamiliar. [My soon-to-be-roommate, Karen, even tweeted last year in both Spanish and English—clearly she is magic. She’s also a sport psychologist and also has asthma, so we were totally meant to be roommates and I’m beyond excited to meet her.] And, while I could tell you what I’m excited for on the main stage, we might be here all day: so check out the program here and get stoked yourself!

Curious? Check it out. Register. [Remember, it’s free.]

And if you have questions, ask away below, or on twitter at #medx—we’ll help you out.

 

*Access to technology among providers in the Western world probably varies much on your geography/medical system. Just because it’s available, doesn’t mean that—for example—iPads are popping up in Canadian hospitals. Here in Winnipeg, electronic charting is sometimes either a) a new thing, or b) not even happening yet.  Which is among reasons why having international input and attendance at these conferences is so important: we can’t improve care through technology we don’t have access to—and, beyond financial constraints, knowledge of value in application is the other huge barrier to integrating technology to improve patient care, or improve the lives of all people. Knowing what I know, I shouldn’t have been shocked when my new-ish gynaecologist, Alaa, pulled up my pathology report on his computer at my first appointment. And I should probably stop being so shocked when I find someone I know wearing a Fitbit or using MyFitnessPal. And, for those of you Canadians who are in this boat with me, don’t worry: there are a handful of Canadians in the crowd, and we’ll do our best to get our voices out there, too.

advocacy / asthma / badassmatics / friends / health + fitness / life / wellness

a year ago today

• by kerri

A year ago today

I surfaced at work after being gone for over a week because I couldn’t move. I’d been getting sicker and sicker for months and I couldn’t keep up anymore.

I went back to school to start Spring term, and right before class got a call from my doctor’s office telling me I needed to go to the ER because my hemoglobin was 54.

Today marks a year since my first blood transfusion of 2013—three units from amazing donors that kept me alive, to be followed by another seven in the next four months.

it’s been a bombs and guns and fire kind of season
oh, i need a reason for all of my bleeding tonight.
i’m going to break it out, i’m going to make a scene if i’m right

Day before I got sent to the ER. Note that there’s basically no colour in my face/lips. [I felt like I had energy, but in reality my body probably had just adjusted to being super depleted of hemoglobin that I was able to sit up again.]

A year ago yesterday.

 

World Asthma Day 2013 [May 7th] 365 days ago today.

About 36 hours later, after three units of blood and a bunch of saline.

(And the friggen Lasix. I still don’t understand this combination of saline and Lasix.)

Yesterday.

let the revival rattle me
and open my eyes
it’s so good.
revival, the rocket summer

And today—365 days later.

World Asthma Day 2014. Wearing the same t-shirt I got my mom to bring to the hospital before heading to work early in the morning.

Donald, Mike, Sam and I gave out over a hundred Asthma Society of Canada resources for World Asthma Day.

…Then went to Wal-Mart with the intention of playing Marco Polo. Because that’s badass, right?

I thought about where I was this time last year today—purposefully at some times, fleetingly at others.

Thankful that it won’t be every year that these two days are the same day so I can reflect on each for its own reason. Thankful for the people who choose to spend their time with me—the people who stick by me.

Simply: thankful I’m still alive.

advocacy / health + fitness / wellness

“i’m moving forward now: the thought of a ghost brought me to life”

• by kerri

–i swear this place is haunted, a skylit drive.

It’s been four and a half weeks since I last blogged. Apparently losing a week of your life/near death experiences suck a lot more time out of life than just that one week.  For the record, I am staying more-or-less in-tact academically which is [very] surprising. I only needed to get one deadline pushed back, which was a deferral on my Sport in the Ancient World midterm. Six extra days to work through the things I missed meant I got a 78% on that test, which was much better than I’d anticipated even had I not gotten sick. I’m sitting at 100% in my Developmental Studies class (SERIOUSLY.) and got 63% on my Disability Studies paper (I am fully intending to argue that one).  As soon as I got back on my feet, I had to start drowning in school again. I had a full three days of all day work and nights till 3 AM on the two aforementioned papers that were the same week as the Sport in the Ancient World midterm was SUPPOSED to be (had my amazing instructor not granted my test deferral I’d have been screwed).

Other than academics, it’s been a hell of a few weeks. Two of the chaos producing things are so worth it: getting my Special Olympics season off the ground (six confirmed athletes, two unknowns, two coaches and five program volunteers: I need more athletes!) and planning a Team Asthma event for Sports Day in Canada. Things are fortunately falling into place but I now have five weeks to promote this event and get things off the ground. It never stops (thank God).  One of the two other chaotic things, however, was not anticipated and not a welcome situation, and I still have yet to figure it out.

I saw my primary care doctor two weeks after surgery. To say it sucked would be an understatement, and I am looking for a new doctor. To start, we discussed nothing much relevant to my post-surgical state–had I not been as angry as I was, I’m sure we wouldn’t have discussed it —at all. I went in and tried to stay civil, and asked about flu shots. Flu shots are civil topics of discussion. I then asked if she would refer me to Alaa, the doctor I saw at the hospital who did my surgery. Through the whole multitude of gynaecologic related shit, my gynaecologist had been very available and more than happy to see me any time I needed–what he wasn’t, was action driven. He also had the ability that is probably very helpful in dealing with pregnant ladies to make a person very calm (and perhaps he should reconsider a career in something like criminal negotiation because it’s near impossible to get mad at the man), which makes it a bit hard to get mad at a person. However, he also dismissed my questions regarding the fibroid, saying that it was small and shouldn’t be causing my problems. Considering under his care I received multiple blood transfusions, that in itself should be enough to warrant a referral elsewhere. It wasn’t, apparently. My primary care doctor refused to make the referral until she “receive[d] the pathology report indicating [I] need ongoing care,” but apparently I didn’t have to see my old gyn again if I “didn’t want to”.

This is where I lost it on her. “I don’t CARE what some report says, I WANT ongoing care. He was apathetic towards finding the root of the problem from the beginning, and even once it was evident refused to deal with it and book surgery until my mom called him. That’s not okay. This time I almost fucking died. I shouldn’t have to spend ten hours in the ER prior to going into hypovolemic shock less than two days after a blood transfusion, and require resuscitation before I get proper care. How is that acceptable? That’s absolute bullshit.”

That about ended the appointment. I can’t say she really responded to any of it, but it certainly didn’t get me a referral anyways. I briefly discussed the weird inspiratory pain I’d developed following surgery (I was betting and she agreed that it was just a muscle strain from coughing) and requested to go for a chest x-ray to rule out anything bizarre–honestly, she refused, and asked about pain killers at which point I lied and said I’d tried the go-tos (I’d really only tried Naproxen which did nothing), telling me “Take two extra strength tylenol every four hours for three or four days–if it still hurts, come back in and I’ll send you.” Seriously? Not going to happen. Why on earth would I OD on OTC pain meds for really minor pain?

I got a requisition for blood work, but I left without booking a follow-up appointment and hoping I never had to go back in there. I got a call the next day saying my hemoglobin was 93.  The downfall of chronic disease is I need asthma medicine to live–and I kind of need a dealer.

—–

Given the inability to secure a referral from my doctor, I called Alaa’s office myself the next day. I left a message not anticipating anything, explaining who I was, that I’d seen Alaa in the hospital and he did emergency surgery on me, that my primary doctor refused to make me a referral, and that I would really like to see him for ongoing care.

Two hours later I was shocked to see “DC OB/GYN” pop up on my caller ID, saying “Dr. Awadalla would be happy to see you for follow-up and ongoing gynae care.” I have an appointment on Tuesday.

I began the quest to find a new primary care doctor, which has been quite futile. I have a bit of a deadline of December 5th [when I apparently long ago booked a follow-up appointment] unless Alaa or my psychiatrist will refill my asthma meds for me (ADHD meds appointment with a side of bronchodilators?).

—–

Last week, after the appointment being pushed off for nearly a week, I saw my old gynaecologist. Ready to give the man shit except, damn, he’s too nice.

“So, they removed a fibroid, eh?” I told him he had certainly been informed of it.

However, he gets huge props for the fact that the second question of the appointment, which certainly made me soften a bit: “Is Dr. Awadalla taking over your care?” When I said yes, he replied “He’s a very good doctor.”

“Yeah, I really like him.”

At this point I had to start answering him in more than a few words. He, I swear to God, asked “Have I seen this ultrasound? Who ordered it?” I reiterated that he had seen the ultrasound as both myself AND my mom brought it to his attention. “A submucosal fibroid–in over thirty years of practice, I have never seen that type of fibroid in a young person–they’re rare.”

Then, he apologized.  He apologized more than once. If you are going to majorly fuck up despite being a kind and skilled person, there is no way you can fix that: a sincere apology, however? It’s as close as you can get sometimes. He told me once again “I’m sorry we put you through all of that”, and I could genuinely tell he did feel really bad about what had happened–what he had missed, what he had overlooked.

“I accept that. But the only reason I came in today was so that I know that you know exactly what happened: so that you realize a week after you told me I didn’t have to come back for six months I was in resuscitation for hypovolemic shock. It’s not okay: it may not be the typical, but it happened–I’m proof of that. So next time you have a young person in here, presenting like I did, please consider it. Because I don’t want anybody else going through the hell that I had to go through.”

With that, we left the room.  And I even said “thank you” on my way out.
I booked it down two flights of stairs, finally feeling free.
I dug my iPod out of my backpack, and scrolled through.
freedom is mine, and you know how i feel: it’s a new dawn, it’s a new day, it’s a new life for me . . . and i’m feelin’ good.
feeling good, nina simone [muse cover]
Shuffle, ever appropriate, interjected:

but i am the reason that i will stay alive […] every now and then, i think about you: it’s bringing me closer to closure–every now and then i know it’s over. […] take everything you need and move on. we are the answer to the broken breaking through–take everything from me: ’cause i’m not dying, no i’m not dying today.

the energy, audiovent

Because never again do I want to be where I was.

the thought of a ghost brought me to life.

I was that ghost.

I’m moving forward now.

i swear this place is haunted, a skylit drive

Here’s to moving forward.

Again.

Always.