can you tell me how this story ends? […]

and i feel like i’m a battle tank, but there’s peace for every pound of strength /  i’m waiting for the enemy, while she plugs my machines back in…

[…] i’d be lying if I said this was my plan […] / see I’m trying but I just don’t understand why i can’t predict the weather past the storm.

diane the skyscraper, jack’s mannequin

This is not the story I planned.

Unlike last time I ended up in the emergency room, I am struggling to make sense of this, or find any sort of silver linings in the situation. This time, through tachycardia, hemoglobin drops and another blood transfusion, I cannot make any sense of it at all. But, as there always is, there is hope.

970475_10152872251595375_81629199_n.jpg

After Friday’s double-stick blood work, which measured a pretty good hemoglobin level.

I was supposed to get on a plane to California on Saturday morning. Friday night, knowing that things were definitely not right with my body, despite a freshly drawn hemoglobin of a beautiful 108, my mom and I cancelled my flight to San Francisco (with a lot of tears), and I was absolutely crushed. As I mentioned in part 1 of this saga, we know the root of the problem (super messed up periods–also if you are not into a bit of TMI, stop reading now) but not the cause of it. The first try to fix it, Provera, has only made things worse (this is where I should mention that I tried to get in touch with my gynaecologist last week because things were okay and I just wanted some direction. The issue was, he was not available all week, thus I had to solve problems myself. See also: not a doctor.]

I was experiencing significant tachycardia (high heart rate) on Saturday but I really didn’t realize how bad it actually was until I checked into the ER early that afternoon. My mom parked the car, I got out and walked into the ER (climbing a hill on the way). Vitals were done, bracelet placed on my arm, and the triage nurse said “Can I get a wheelchair out here?” My heart rate was 168 (and I tried to convince them I could walk), and I was promptly taken to the back, where blood was drawn, an EKG was done.

I spent the next 8 hours hooked up to telemetry (which meant my heart rate and oxygen saturation were measured continuously, and my blood pressure was automatically taken at regular intervals, which frequently made me jump). We did a couple walk tests around the ER to see how my heart reacted early on and to catch some arrythmias (fun), so basically things were going all over the place. Between my blood work at 9:30 AM on Friday in the outpatient hematology clinic, and Saturday afternoon, my hemoglobin had dropped from 108 to 88. Any hope of rescheduling my flight was ripped out of my hands as soon as I set foot in the ER.

Winnipeg-20130609-00485.jpg 1004025_10152878166760375_1993994189_n.jpg Winnipeg-20130608-00467.jpg7153_10152878166810375_1942653664_n.jpg 971984_10152878166825375_640865637_n.jpg

When the doctor finally came in (“Nobody’s seen her yet?! The chart says ‘Treatment in progress’!”), she ordered fluids to get my heart rate down, and an IV was started (where they gave me a wicked bruise).

996787_10152878166820375_415078930_n.jpg

Winnipeg-20130608-00465.jpg

(Wouldn’t be an ER visit without giving the camera the finger, yeah?)

Winnipeg-20130608-00449.jpg

Still looking pretty pink! By about 10:30 PM, my heart rate was down to 92 at rest, and they let me leave.

Winnipeg-20130608-00466.jpg Winnipeg-20130608-00469.jpg

Sunday morning, things had reverted to how they had been. My heart rate was still way too high at rest, and after procrastinating the inevitable a lot, a reading of 137 prompted a return to the ER. On the way there, I had this really weird feeling that my body was really hot, when apparently it wasn’t hot in the car–my mom dropped me off at the door to the ER, where I walked inside, and immediately walked into the bathroom and puked (I felt totally fine after that, so I am not sure what the deal was). My heart rate at triage was 160, and while they didn’t make me get into the chair this time, I got pulled from the waiting room into a treatment room really quickly. The electrodes from the day before were still stuck all over my chest and stomach, so I saved them some time and they hooked me back up.

Winnipeg-20130609-00478.jpg

I was quickly hooked back up for another EKG with all the sticky things still securely in place, but they didn’t make me do any more walk tests. My heart rate spiked up a bit whenever I walked to the bathroom, but it came down pretty quickly.

The ER doctor on Sunday was a lot more conservative in his treatment, and a lot more thorough in his assessment. I was actually only monitored and not treated in the 6ish hours I spent in the ER. My hemoglobin was 79, so I was on the verge of being okay. I was given the option for transfusion or to simply go home without treatment. Considering I was still tachycardic and we had not yet addressed the cause of the hemoglobin drops in treatment, I opted to do the transfusion, however, I was also given the option whether to stay overnight or return in the morning to do the transfusion either in hematology/oncology or in the ER, wherever they had space. No decision needed, I opted to return home and to sleep in my own bed.  The doctor gave me the pros and cons, and it was a really hard choice to decide to repeat the transfusion. However, the ER doctor who treated me on Saturday night came in to see me when she saw I was back in, and she and the nurse who discharged me said that I’d made a good choice.

I went home for the night, peeled all of the electrodes off my body [the ones on my chest were easy to peel off, the ones on my tummy hurt]. Seriously, the amount of adhesive that pulls up when these things are removed is wild.

Winnipeg-20130609-00486.jpg

Monday morning, I returned to the ER to check in for my transfusion. After a long wait, a volunteer kept asking the desk where I was going and when (sidebar: hot male nurse at triage. Bonus!), and they eventually got a move on.

Winnipeg-20130610-00493.jpg

I ended up being transfused in the back of the ER with an awesome nurse named Alexa taking care of me. Alexa was an IV-inserting rockstar, and not only did she get it in on the first shot, it barely hurt worse than a blood draw. New favourite nurse EVER. She, like the ER doctor and the nurse the night before, agreed that I’d made the right choice about the transfusion.

Winnipeg-20130610-00501.jpg

Four days later, Alexa’s insertion left very little bruising–check out this bruise from Saturday–a failed insertion attempt.

Winnipeg-20130610-00538.jpg

The transfusion…

Winnipeg-20130610-00512.jpg Winnipeg-20130610-00527.jpg Winnipeg-20130610-00513.jpg 998888_10152881885675375_1523459235_n.jpg

(During these visits to the ER, I’ve learned to fix a bulk of my own alarms. Alexa wasn’t too impressed when I got tired of the IV beeping after the first unit and silenced the alarm :]. I was also fixing my own alarms whenever the SAT probe stopped reading on Saturday and Sunday by changing fingers, and I’ve mastered fixing occlusions. Oh, and no Lasix this time!)

During the transfusion, the nurse who triaged me on Saturday found me and checked in–she had been trying to figure out what happened to me [because “it’s not very often you see someone in their twenties with a heart rate that high!”], which was so sweet. All went smoothly with the transfusion, until the pump signalled the end of the second unit. Alexa came to check the IV . . . and the bag was still half full of blood! I’d been watching the minutes count down on the monitor, and I was so frustrated when she told me that my transfusion wasn’t actually over! She had no idea why the infusion stopped, but she got the remainder into me in record time (I had my celebratory cupcake too early, which was a downer!). One final blood draw, and I got to go home [via Starbucks, which is a thing–like wearing that t-shirt during–that I do following transfusions, apparently).

Check out these vitals (note that my blood pressure didn’t fluctuate much from the other days, but my heart rate is much lower. Yay for being young?)

1000814_10152881808360375_164598775_n.jpg

I’ve been running since a long time / I’ve been hiding from the truth / I been battered, been broken, been buried now and death proof / and i’ve been known to take a big chance / but i can’t waste another shot at redemption, no / i’m ready, don’t let me go passing through the wrong hands.

my confidence is in crisis mode / your fingertips, well they know the code / release me / take another piece of me and there won’t be another left / come on release me / take another piece of me and there won’t be another left unless you let go.

i’ve been waiting for the sun to shine / another winter ends / the winter’s starting over / we met beside a landmine waiting for the wind to blow / and i’m in trouble with these friends of mine / change was in my blood, i lost my sense of direction / i dragged us to the bright light / life was like a tv show.

[…] i’ll be nothing but sand falling down / through your fingers to the ground below. / i’ve been running, i’ve been running, i’ve been running such a long time.

release me, jack’s mannequin

When I thought it was all over, Sunday evening I experienced yet another bad bleed [sure, right after we put all that new blood in!]. My mom called the 24-hour answering service and my gynaecologist, who was on call, called right back. If the bleed lasted more than two hours, I needed to go to a different ER, if it subsided, he would see me the next day. Well, my mom didn’t listen to me OR the doctor, and carted me back off to the ER of the big downtown hospital, which was packed, smelled like booze, and was going to be an extremely long wait. Very soon after we got there, the bleed subsided, and after triage my heart rate was “only” 101. I managed to convince my mom to let us leave–it would have been, I am sure, 5-8 hours before I entered the treatment area, and I figured I was better off laying down where my heart rate probably wouldn’t be in the triple-digits.

I need to say RIGHT NOW, that my gynaecologist is friggen AWESOME. He walked in yesterday afternoon and said “Are you still bleeding to death? We need to get you fixed!” We had been trying to get this to subside without using combined hormone pills [oral contraceptives], because of my retinopathy, but at this point we have no choice–they are safe medications but not without risks. Bleeding to death, however, I suppose is also a pretty significant precursor to actual death, so that was our first step of the day.  After he examined me, he didn’t think there was anything abnormal, so the good news is that the hormone pills should get things re-balanced and it’s “just” a hormone imbalance causing all this. Then he did a minor, in-office surgical procedure that will hopefully alongside the pills lessen [and stop] the bleeding. I think initially he didn’t think I was going to get through the in-office aspect of it, because I was really shaky and kept tensing up, because he said “Okay, we’re going to try this, but I might have to get you in for emergency surgery tonight. Have you eaten anything today?” [I was like “Fuck, so now it gets serious? Have I not just been in and out of the ER all weekend?]. We kept going, though, he talked me through it really well, and apparently I did a lot better than most women do (and thank God, didn’t have to set foot in another emergency room).  My gyn is also super funny, so that made the unpleasant experience significantly better (“I had a hundred year old lady in here awhile ago! I was like, ‘If I’m a hundred, I don’t CARE if anything is wrong with me!'”). I also confessed that I’d screwed around with the Provera the week prior, because he wasn’t there to advise me–he was SO good about it–“Well, I wasn’t here and how were YOU supposed to know? It’s okay, we’ll get you fixed!”  Seriously, this guy might be my new favourite doctor.

So, it could be a bumpy road ahead, but hopefully we are on the right track to a resolution.

I fought  a war to walk a gang plank / into a life I left behind . . .

994283_10152885971970375_138228488_n.jpg

I need to extend a huge thank you to the people who took care of me the last few days. I can in no way provide a comprehensive [or accurate] list of all of the ER staff who took care of me on the various steps in this journey–however, among them are “Dr. Dan”, Dr. Derksen, Susan – RN and Alexa – RN (Specialty Nurse – Critical Care).

An extended thank-you to Dr. Campbell from May’s ER stay, who referred me to hematology to ensure we are getting a comprehensive look at what may be going on in my body; as well as to all of the amazing Emergency Department staff at Seven Oaks Hospital who played a role in my care whose names I cannot recall amongst the chaos.

Thank you also, of course, to my friends near and far–especially Steve and Danielle for being unwavering supports–and to my family.

Photo+on+2013-06-10+at+14.28+%232.jpg

The biggest thank you I have to extend, though, is the people who volunteer to donate blood. I have been blessed by this gift twice in five weeks, and to selflessly give a component of your own body to help someone you do not even know is extremely generous. These situations come with certain ironies, and this time, the irony is that it is National Blood Donors Week . . . and I could not be more thankful for people who make the choice . . . to give life.

Photo+on+2013-06-10+at+14.52+%232.jpg

Creative awareness: I am all about it.

Elisheva sent me a link to a Kickstarter project the other day. I have never backed a project so quickly in my life (I couldn’t remember my password, which caused issues but ALL BECAME WELL). To say that this project intrigued was an understatement. Essentially, I immediately was trying to figure out how to get in touch with the creator of this project so we could talk more about it.

Brandon Vosika is in the process of creating an art book called Shake Well Before Use: A Book of Paintings About Asthma. Each book will be professionally printed and then hand-bound by Brandon, resulting in a really special and unique compilation of original art focused on asthma.  Brandon and I are only a couple years apart in age, and I was stoked to find someone my age also pursuing asthma advocacy in a creative way. Within 12 hours of finding out about the Kickstarter, Brandon and I threw multiple e-mails back and forth, and put this Q&A post together so that more people can learn about his project.

Thanks, Brandon, for jumping on board with this!

—–

Shake Well Before Use – Art by Brandon Vosika.

Kerri: Hi Brandon, thanks for collaborating on this with me! So, because Shake Well is an art project, I guess we’d better start with the basics: when did you get involved in art? What started that part of the journey for you?
Brandon: I started painting very silly things about 8 or 9 years ago, in high school. From then to now I’ve taken several long and short hiatuses to record music or do other creative sorts of things like that but it’s always come back to painting. The start of this journey of my art came in a rather cliche way actually… I was quite sad and didn’t know what to do with myself. So I decided to start painting. This is the case with many people, I know. The only difference for me what they I never stopped and was able to grow and mature and my silly sad art grew and matured with me (thank god) because now I don’t find what I do sad anymore. Maybe a little silly still… I don’t know. I like my work.

KM: I love when things that start out of places of desperation truly come to be big markers of personal growth (growth is a big theme around here, too). The other component of Shake Well is obviously the asthma. How does asthma play into your life? What’s your asthma story?
BV: Well, I’ve had asthma for 22 years, I’m 24 years old now. My mom and dad separately tell me little horror stories about my wheezing and doing constant nebulizer treatments and having to go to the hospital and whatnot when I was a baby. I’m so glad they’re good parents! But yeah, it’s an every day thing for me.. I’ve always got an inhaler with me wherever I go. Thankfully I don’t have to use it all of the time but it is something that I need at least once a day. It’s Advair before I go to bed and depending on how I feel when I wake up, maybe in the morning. You learn to make allowances for yourself and learn what you need to do for your particular case. I have allergies as well so I take claritin, allegra or zyrtec most days. Vacuuming often, air purifier, keeping things clean, trying to be active but not to over do it (I have “sports induced” asthma) – that’s a big part of my life.
 

KM: I think there is a lot to be said about the balancing act that can be asthma and everyday life–and, I think

Our Lungs – Art by Brandon Vosika.

being a young adult only complicates things as per usual!  To connect the asthma to the art . . . What made you decide to create Shake Well Before Use?
BV: I decided to do the paintings about asthma after I had a bad attack and was forced to visit the ER. My week or so of recovery was a good time for the art to form. I realized that almost no one was making art about a disease I’ve had all my life and that over 300 million other people have around the world.. I decided to try and change that.

KM: That’s fantastic. It also alludes to something I often mention (do we share a brain and not know it? :)) in that “10% of the population has this disease . . . but where are they?”. Sometimes I feel like nobody is really doing anything about asthma–that’s why projects like Shake Well that literally paint asthma in a different light are so fantastic.
Aside from watercolour, what other mediums do you like using? Are you into any other types of art other than visual arts?
BV: Watercolor with pen or pencil is the medium I use the most but second to that would be mixed media collage. Using anything from sawed/sanded/painted wood to antique magazine or paper clippings to paint and ink. I also enjoy a little sculpting, recording music, writing and general crafting.
Film and music are two definite passions of mine. I work in a record/movie store for a day job. I love new stuff, older movies, strange film bits.. I wont go into it but cinema is gorgeous. Music is as well obviously. Nearly every young person these days seems to live for music though so that seems boring even if it is the case. I love music!
KM: Completely true on the music thing–I’ve definitely encountered that too! Of course, there’s a big difference between simply being “into” music, and being a musician and creating music! What other things do you enjoy doing in your spare time?
BV: As life goes by you find new things to spend your time doing. you leave the old behind and start with the new. It’s the things that are always with you that really matter, I think. I spend my time painting, appreciating film and music, hanging out with good friends and trying to travel a little. Oh and time is spent helping customers at work (where I also get to hang out with friends all day). KM: Sounds like a great way to live :]. I have a similar work situation in which work is almost as fun as not work! Wrapping up with a little philosophizing here, what’s your favourite quote?
BV: “Life is great. Without it, you’d be dead.” -From the movie Gummo.

—–

Images used with permission from Brandon.

Want to learn more about Brandon’s project and give him a hand? You can back his Kickstarter project for as little as $1, and receive cool incentives from $5–at as low as $20 you’ll receive a copy of the art book upon completion–I am very excited to receive mine!

Learn more about the project by visiting the Kickstarter page.

To wrap up Asthma Awareness Month, I thought it would be interesting to vlog a day with asthma to give an idea of what things can be like. Though I’ve been sharing guest posts from my friends with asthma, they capture the big picture but not the finer details of the day to day intricacies of living with a chronic disease.

Asthma, though, can look immensely different from day to day and from person to person. I am extremely thankful for the willingness of some of my friends to rise up and join me in sharing what a day in their lives with asthma looks like (and, on very short notice)–and of course, if anybody else wants to contribute, by all means, please fire a video off to me!

Super special thanks to Steve for getting a video off to me on really short notice!

Steve and I filmed these in an overlapping block of time, so we really had no idea what the other person was doing. However, our perspectives really overlap in certain parts of these videos, which just blew my mind. Steve has really severe asthma, but if you know any part of his story, you’ll know that he truly rolls with it, does what he has to, and lives a really vibrant and active life regardless of his asthma.

However, despite “asthma” sharing a common name, and Steve and I having common passions . . . you will see that Steve’s day is dramatically different from mine.

(By the way, I’m convinced Steve is a pro video blogger in disguise. And I think he needs to do this more often. Also, Steve, I like your hoodie.)

Asthma: it’s a six letter catch-all.

It can have a host of symptoms from coughing, to shortness of breath, to wheezing, to chest tightness.

It can be asymptomatic, or relatively mild, or severe enough to require treatment in the intensive care unit.

It can be treated with inhalers and nebs, pills and injections.

It can affect somebody for two minutes a year, or twenty four hours a day.

It can be anything but simple, and there is no such thing as typical.

But most importantly . . .

It can be owned,

it can be lived with

. . . and it can be thrived with.

Despite the fact that my online friends and I often live thousands of kilometers apart, sometimes we are lucky enough to meet one another in person when the right series of events occurs. Back in the Fall of 2011, Dia (who I really hardly knew at the time!) happened to be in town for work . . . and then we clicked so much I ended up skipping Issues in Sport to continue hanging out with her in Second Cup due to the effects of #kinwin (kinesiologists: we get it).

On occasion, Dia blogs at Respiratory Situation. Today, I’m stealing her and she’s sharing her story here! (And, if you have any questions on the science-y things, I’m going to have to refer you to her!)

—–

A big thank you to Kerri for asking me to guest post on her blog

Happy Asthma Awareness Month everyone!

Here is a bit about my asthma story; I had what has been described as childhood asthma but the experts have debated that it might have really been some kind of bronchiolitis. I was asymptomatic for decades until I got a cold, which became pneumonia in 2008 and things were never the same. My family doc mentioned that my “asthma” was exacerbated and I remarked ”…but I have not had symptoms in decades” how can this be asthma?” That question began a journey of  tests, doctors, meds, more tests, more doctors ( world  renowned docs), 2 counties , different  meds, participating in  research, novel treatments, becoming a more informed patient and  developing an excellent working relationship with my doctors.

The heterogeneity of asthma

The asthma umbrella incorporates tons of different shapes, sizes, and abnormalities…etc. We are not all round, trying to fit into a round hole.   I know for sure that I am a SQUARE! My respirologist once told me that none of his patients were the same.  They all have variances from each other. This is one of the things that makes asthma so complex.  Some patients are coughers, wheezers, produce sputum and others don’t.  Some respond to certain kinds of treatment and others respond to something else. ( There are lots of journal articles on asthma phenotypes, endotypes and personalized medicine , you can also speak to your Respirologist about this topic.)

My “Square Peg was finally identified after wading through a sea of “ its just asthma, use your rescue inhaler and we don’t really have any ideas, why you are not getting better so, lets just keep you on prednisone.” Btw:   I am yet to be convinced of the wonderfulness of long term prednisone use, much to the chagrin of my Respirologist , even though we are trying everything to get me off that posion.

My Peg involves a significant eosinophilic component, mucous hyperseacretion and severe airway hyperresponsiveness. There are limited options for my specific abnormalities.  Name the inhaler, add on therapy and I have probably tried it.  I have also tried a few out of the box therapies with mixed success. It does get discouraging but you just have to keep pushing forward. This fall was the most ill that I have been in nearly 2 years and it was scary, but you get through it.

What to do as a “Square Peg”?

Arm yourself with knowledge, read everything you can, ask questions, be willing to try something different, participate in research, be pushy but also be respectful of your care team (they are people too and are often just as frustrated as you are), be an ACTIVE participant in your care. Keep pushing for better treatment, better awareness and find/develop a network of asthma peeps to help you through the journey.

A network of Asthma Peeps

There are times when asthma and lung disease suck beyond belief. When you don’t bounce back, despite all the treatment under the sun, when people don’t understand what you are doing, is the best you can with what you’ve got. Be responsible for yourself, change your perspective and be willing to try.

Remember that people are cheering for you to be successful (get better, push new limits…etc) I encourage you to find a group of people who understand (speak to your doc about speaking with a therapist who deals with chronic illness or directing you to a support group). There are also online communities that are awesome and you can meet some wonderful people (Like Kerri!) through them but you should be willing to be an active participant in that relationship.  Why not start a grassroots based support network?

To my support network and asthma/lung team, THANK YOU for everything.

You can find me at http://respiratorysituation.wordpress.com

Resources that I find helpful (Of course nothing can replace human contact!).

Badassmatics on Google+

PURR at FIRH , Pulmonary Research Registry 

Severe Asthma Research Program

http://www.amazon.com/Fishmans-Pulmonary-Diseases-Disorders-Set/dp/0071457399

http://www.ncbi.nlm.nih.gov/pubmed

The Asthma Society of Canada

A couple months ago, I connected with Breanna through the Asthma Society of Canada’s Team Asthma Facebook page. Breanna has severe asthma, and is looking into bronchial thermoplasty as a potential treatment option–today, she’s sharing a bit of her asthma story here for asthma awareness month. Thanks Breanna!

—–

breanna1.jpg

I am a 28 year old female and was diagnosed with mild asthma at the age of 19, to be honest never really thought much of it. I carried an inhaler when I remembered and used it as needed. In November of 2009 suddenly my asthma became severe. I realized that I had taken it for granted, started a controller inhaler and singulair. Unfortunately things didn’t improve and I started seeing specialist. I am currently on my third specialist, first one being an internalist and the last two being respirologists.

Every visit seemed to bring on new medication, new tests and frustrations. I went from going to emergency every 2 weeks to once a month and currently about every 6 weeks I have landed in emergency. I have been intubated, triedc-pap and many medications. Currently I am awaiting an appointment in Hamilton to see about possible bronchial thermoplasty. I have very atypical asthma, I cough continually and do not wheeze, however all tests point to asthma.

Asthma has taken so much from me, I am currently on disability from my job, it has taken some of my friends, some of the sports I played and activities I loved such as camping. However asthma has given me so much, I found out who will support me through all the frustrations and doctors appointment. It has also given me a new appreciation for those who strugglewith chronic illness.

I have made new friends and a new support system. As I am not working I am able to help friends out when I am feeling well and also slowly exercise to try to build up my lung tolerance. I am also able to take some university courses through distance education.

Asthma is a difficult disease it takes and gives and not many people understand the severity of the disease. On World Asthma Day I hope people take a chance to learn and educate themselves about the severity of the disease. It is even important to learn about triggers, I react strongly to scents, chemicals, smoke and weather changes. If you see me covering my mouth and hurrying away from where I am, please look at the amount of scent you are wearing.

Asthma is now a part of who I am but it does not rule my life.

–Breanna Harms