The Gift of Blood

We dragged a patchwork blanket onto the front lawn and had a “read under a tree” date. Ever since she was little my daughter has loved to read under trees, and since being inside is getting a little old after two months of quarantine, this was a perfect afternoon activity.

We read a chapter of Peter Pan out loud (so good! If you have never read it you are seriously missing out) and then settled in to our own individual books for a bit of quiet. She opened a favourite comic book and I returned to Fearfully and Wonderfully: the Marvel of Bearing God’s Image. Every chapter gives me so much to think about, it’s taking a while.

This day the chapter was about blood.

Blood is something I am well acquainted with as a diabetic. Until a few months ago (when I got new technology) I would prick my fingers up to 10 times a day to test the glucose in my blood. The sight and taste of my own blood is familiar and reassuring. It’s part of me and interacting with it is no different than washing my face or brushing my hair.

Diabetics everywhere rejoiced when a recent emoji update included a syringe and a bright red blood drop. Finally one of the biggest parts of our daily routine was represented in this new language on our phones.

When my sugar is high my blood feels thick and poisonous. I ache all over. My movements are slow and exhausting. I know from reading about diabetes that when my sugar is high my blood can become acidic. I know from experience that if it gets high enough it makes my kidneys hurt.

All of this makes me appreciate the blood that flows through me, keeps me alive, and warns me when things are wrong.

When I underwent plasmapharesis to stabilize my Myasthenia Gravis before surgery I saw my blood in a new way. With tubes in each elbow I watched dark red blood come out one elbow, enter a large loud machine, and return to my body through the other elbow. Large glass bottles, filled with plasma the colour of champagne, hung at the end of my bed and were quickly drained as they were added to the mixture going back into me. When I got up after three hours I’d see the bag of my old plasma hanging above the head of the hospital bed. Cloudy, like homemade apple juice with particles still in.

I hated that process more than anything in my life and it made me appreciate my kidneys and the way my body cares for my blood on a daily basis.

As I lay reading in the sun on the lawn I came to the middle of the chapter where Dr. Brand starts to write about transfusions.

He explained how transfusions work. He explained how vaccinations and inoculations work. That they take the “blood of an overcomer” and introduce it to a sick body to lend it the strength it needs to fight infection.

As I lay in the sun I was very aware of my infusion kit lying beside me, of the needles taped to my bare skin where my shirt had risen up, of the antibodies pumping slowly into me. Other people’s blood, processed and refined, mixing with mine. Lending me the strength to live.

I am so grateful for those who willingly give their blood for people like me. They don’t know the stories of everyone who may benefit from their gift but they recognize the powerful potential of their blood, not just for themselves but for others. And they give freely.

Amazing.

My chart

This post is brought to you by the pain in my back during a fancypants gala event with my husband’s work. I’m laying on a church pew in the hallway while the party continues. I might as well write.

Last week I had an appointment with my endocrinologist. Usually I get bloodwork done one week prior so we can discuss the results, I bring a week of glucose readings written out to examine, and I carry a list of various other questions. This time, due to various life circumstances, I showed up almost empty handed. And that was fine because my endocrinologist is phenomenal.

She wrote me some prescriptions, completed the paperwork so I continue to receive government grant money (have I mentioned that I love the health care system here?), and said it was fine for me to go down to the lab after our appointment to get that blood work done.

I thanked her and said I’d call her secretary in a week to get the results.

And then she changed my world.

She told me that the Ottawa Hospital has started using a program called MyChart. Patients get an PIN from the hospital and enroll online. That sounded pretty good so I set it up before I left and logged in online a few days later.

I saw my most recent blood work (not great but okay) and then I scrolled down and realized I could see every piece of information that the hospital has written about me over the past year.

I saw the records of all my IVIG infusions and all my plasmapheresis treatments. I saw the results from every time they did blood work. I read assessments done by physiotherapists, respiratory therapists, neurologists, haematologists, immunotherapy doctors, anaesthetists, surgeons, and the pathology lab.

I read a minute by minute account of what happened during my thymectomy in January and as I was reading about all the manipulation my body went through while I was unconscious I though it was no wonder I was so sore when I woke up. They cranked my body into an optimal position for surgery using an inflated bag and various other props. There were multiple steps to removing my thymus and although I only had a few steri strips on my outer incision my insides were covered in stitches.

Picturing myself positioned like that, exposed, intubated, and with my eyes taped shut, I felt very vulnerable. I closed the website and went back to work.

Over the rest of the day I was haunted by that sense of exposure, invasion, and vulnerability. But that faded as I realized how grateful I was to have access to all that information. And then I felt empowered.

More empowered as a patient than ever before. This is a huge step that the hospital is taking. The former hierarchy of doctor patient relationships is being replaced by a more equal, lateral, relationship. By giving us access to our information in such a transparent way they are explicitly stating that we are partners in our own health care.

I love it!