Sunday, 19 February 2017

I hope everyone has dug out of their house by now! We've gotten so much snow in such a short period of time here in the Maritimes. Based on conversations at the library, I seemed to be one of the few people in Springhill enjoying the storms. It helps that we don't have to shovel our driveway or go anywhere on the terrible roads.

I went out snowshoeing and cross country skiing a few times on the trails around here. It's really nice to be able to walk from the house and get on the trails.
I think I could ski to Amherst if I had that much energy.
And I've been downhill skiing several times this winter at Wentworth. It was a bi icy before this snow hit but now it's gorgeous. I went out last Wednesday while Isaiah snowshoed up the hill (on a snowshoe trail, not up the ski trails). The conditions were amazing! There was so much fresh snow and while only some of the trails were groomed, I stuck to those ones and it was wonderful.

I was zipping along one of the trails and was thinking about avoiding the snowboarded in front of me, the next thing I knew, I was sliding down the mountain on my face. I must've hit a soft spot or some moguls, I'm not even sure. What I do know is that I landed on my knees because I could barely stand up. I somehow made it down the rest of the trail but as soon as I got inside, I knew that was it. I've been icing my knees since then and they're slowly healing but it'll be awhile before I get to enjoy the snow again.
It was such a beautiful morning.
Now this is all I can do.
In the meantime, I had my monthly pft's done last week and my fev1 is 70%, so the same as before. On the new requisition the doctor only requested my fev1 and not the other tests they had been doing. So now it's less than a 5 minute visit.

Now I'm off to Halifax for my 9 month post-chemo check up on Tuesday. I got my bloodwork drawn on Friday and that's all they want for this appointment. I'm sure she'll check for lumps but other than that, it's kind of a waste of time. At least it gives me an excuse to go to Halifax and visit some friends. We were planning on skating on the Oval but seeing as it hurts to stand up for too long those plans have been axed. Maybe a coffee shop and some board games instead.

Sunday, 12 February 2017

Art!

Part of my New Year's plans for this year was to create more arty things each week and not worry so much about the outcome. And so far it's going well! I've spent more time being creative and doing the activities I always say I should be doing but put off. That's what New Year's resolutions are all about, aren't they?

I went on a bit of a sewing paper-piecing kick and sewed some silly things from patterns I found online. I'll square them off and turn them into cards eventually, that part just isn't as fun. I'm also learning that it's hard to get eyes even on these things.


I've also been drawing more. I got a few kids "How to Draw" books from the library and have been having fun drawing nonsense monsters, bugs, and dinosaurs. The lady bug is a bit creepy looking.

I also spent an afternoon playing with paint and dreaming of zooming along on my bike.

Hopefully more to come!

Sunday, 5 February 2017

Living without lungs

At work on Thursday, several people asked me "Did you hear about the woman who lived without lungs for 6 days?!?!" Then we had a great chat about organ donation and the amazing-ness of science.

If you don't know what I'm talking about, here a summary of the story as reported by UHN:
"Melissa, then 32, was brought into TGH's Medical Surgical Intensive Care Unit (MSICU) in early April 2016, sedated and on a ventilator to help her laboured breathing. For the past three years, Melissa, who has cystic fibrosis, had been prescribed antibiotics to fight off increasingly frequent chest infections. 

As Dr. Niall Ferguson, Head of Critical Care Medicine at UHN and Mount Sinai Hospital, describes it, the influenza "tipped her over the edge into respiratory failure. She got into a spiral from which her lungs were not going to recover. Her only hope of recovery was a lung transplant.


...A team of 13 operating room staff, including three thoracic surgeons – Drs. Cypel, Keshavjee and Waddell - removed Melissa's lungs, one at a time, in a nine-hour procedure. Her lungs had become so engorged with mucous and pus that they were as hard as footballs, recalls Dr. Keshavjee. "Technically, it was difficult to get them out of her chest."  

But within hours of removing her lungs, Melissa improved dramatically. She did not need blood pressure medication, and most of her organs began to improve.

To keep Melissa alive, she was placed on the most sophisticated support possible for her heart and lungs. Two external life support circuits were connected to her heart via tubes placed through her chest.

A Novalung device, a small portable artificial lung, was connected by arteries and veins to her heart to function as the missing lungs. Working with the pumping heart, the device added oxygen to her blood, removed carbon dioxide, while helping to maintain continuous blood flow.

At the same time, another external device, extracorporeal membrane oxygenation (ECMO), which has an external pump, circuit and oxygenator for the gas exchange of oxygen and carbon dioxide, also helped to circulate oxygen-rich blood throughout her body. 


Six days later, a pair of donor lungs became available and Melissa was stable enough to receive a lung transplant in late April 2016.

"The transplant procedure was not complicated because half of it was done already," noted Dr. Cypel, "Her new lungs functioned beautifully and inflated easily. Perfect."

Did you catch the description of the lungs when they came out?  "...so engorged with mucous and pus that they were as hard as footballs." I think I just threw up a bit. Cystic fibrosis is the worst. We need  medication so our lungs didn't get to the point where they're filled with mucous and pus and hard as footballs. Something to think about while you watch the Super Bowl today.
 
While research for CF may not be at that point, it is amazing what medical advances we have made. Yay science and research funding! And hurray for doctors and families willing to take risks! But maybe it's not such a risk when there are literally no other options. When you or your family member are only a few hours from dying, I think you take whatever the team is willing to suggest. But it must've been so confusing for the family at first. "You want to just take out her lungs with no replacement?"

If your life is in the hands of a doctor, you want those doctors. At least one of them on that team also did my transplant which I was told was quite technical and required skill. I saw a few of the other doctors post-transplant in the hospital and clinic. They are some of the best.

Melissa's recovery after the transplant sounded much harder than mine after she spent 6 days in a coma with no lungs. She didn't complain about it in the interview but I read in one article that she was in the hospital for several months afterward. Her body must've felt so beat up. Plus having to wean off the ECMO machine must have been hard.

I was on the ECMO machine for a few days post-transplant to help my body get used to my new lungs and Amy kept harassing the doctors to remove it. It's important not be on it too long because the longer you're on it, the harder it is to remove. Our bodies are lazy and if a machine is going to exchange carbon dioxide and oxygen with no effort on our part, that's very easy to get accustomed to. The chances of being able to successfully wean off it are between 50 -70% (studies vary). 50% is not high!


The real key to this story is that 6 days after Melissa's lungs were removed, a set of lungs that matched her became available. The doctors don't know how long she could've remained on the machines but it wasn't indefinitely. At some point she needed someone to be an organ donor so she could live. And it happened but it very easily could not have. Unfortunately, people still die all the time while waiting for organs. I hope everyone reading the articles got the lesson to be an organ donor.

All in all, a great medical success story. 


For more information about Melissa and the surgery:

CBC's As It Happens interview 
CBC News article
Everything you ever wanted to know about the ECMO

Sunday, 29 January 2017

Happy 10 years, Isaiah!

This weekend is approximately Isaiah and I's 10 year anniversary and instead of the traditional tin, we're getting the car a new set of brakes. We're romantic that way.

I don't talk a lot about our relationship but we've been through quite a bit over the past 10 years. If a couple can stay together through the stress of a transplant and cancer, I think it's a good set up for the rest of their relationship. If nothing else, we have checked the "in sickness and in health" part off the list.

I can't imagine having gone through all my medical nonsense without him around. If he had a fear or dislike of hospitals at the start of our relationship, he never let it show or quickly got over it. He sat by my side during countless hospital admissions, brought me home-cooked meals, and took my 2 a.m. panic attack phone calls.

We may not always have the most romantic relationship but having someone around who knows me well enough to leave me alone when I'm being injected in the spine with needles is exactly the relationship I want. Something the nurse should've picked up on when she saw him sitting in the corner instead of hovering over me and kept rubbing my arm for "comfort."

Not to say it's all been easy, of course we had issues figuring out the changes in our relationship when he had to take on more and more of a caregiver role when I got progressively more sick. It's hard to find a balance between being a partner and being a caregiver when one person is chronically ill. I think we did a good job but it took a lot of communication about what each of us needed at that time.

I was so scared he was going to burn out that I kept harassing him about it to the point where I probably stressed him out looking for signs of depression. Studies have found that caregivers tend to have increased rates of depression, ptsd, and increased isolation when their loved one is hospitalized, even if the person gets better. A reminder that even if you're looking after someone, you need to look after yourself first. As the airlines always reminds everyone: put on your own oxygen mask before assisting the person beside you.

A recent article in the Canadian Medical Association Journal talked about the importance of caregiver supports and preventing caregiver burnout. They quoted a study from the New England Journal of Medicine that concluded elderly caregivers have an increased 3.7% chance of dying in the year after their spouses are hospitalized. Isaiah isn't elderly so I wasn't worried he was going to die, just that he may burn out and need to run away for awhile.

It's stressful to be the caregiver of someone who is chronically ill. It's also hard to need someone to take care of you. It's especially hard when the person taking care of you didn't exactly sign up for that role. Isaiah didn't go into this relationship 10 years ago thinking he would become proficient at medical lingo, cancer talk, and learning how to navigate hospitals. I had a lot of times where I second guessed our relationship and wondered if he stuck around just so he wasn't the jerk who ran away from a sick partner. That doubt puts stress on the relationship that can be hard to deal with especially when other issues may seem more pressing.

I think the lesson is that relationships are hard, no matter what you're going through and I'm so thankful he's been by my side for all of the past 10 years.

Sunday, 22 January 2017

Recipe: Stuffed Acorn Squash

I haven't shared a recipe in a while so here is a stuffed squash I made this week. We had 6 squash left in our cold cellar from October and for some reason the acorn squash had started to turn yellow so we thought we should cook one. It was fine on the inside and not soft, just a bit yellower. 

It was my first time cooking an acorn squash because Isaiah doesn't like them but he wasn't at the farm on the day I bought all the squash for winter so now we have some.
Why did it suddenly start turning yellow?
I cooked the squash whole, with some salt, pepper, butter and brown sugar for a half hour because it was too cute to cut in half.
Look how tiny it is!
While that was baking, I fried up two sausages (I cut them out of the casing), onion, garlic, and spinach and mixed that in with a cup of rice, salt, pepper, oregano, and sage. 

Then I stuffed it into the squash and baked the entire thing for another 30 minutes and when the squash still wasn't completely cooked through, I cut it in half and finished baking it that way. Next time I'll just start off by halving the squash and save myself some time. It was delicious.