Sunday, 10 December 2017

Cuba!!

The Watson family is off on vacation! It's part Aruba lung celebration do-over, part Christmas celebration, and part taking advantage of David and Cindy being back in the Maritimes for a few months.

It's obviously my first Caribbean beach vacation since my transplant so I've packed a suitcase of sunscreen. I'll be the one on the beach in the shade or wearing pants and a long sleeve shirt because I'm terrified of burning. I burn so quick on my anti-rejection medication and I'm at such a high risk of skin cancer that sunning on the beach isn't a good life decision. I'm sure I'll still get plenty of sun when I'm snorkelling or around Havana.

I'm sure the vacation will be a lot of fun and super chaotic with 8 people making dinner decisions. Can't wait!

Sunday, 3 December 2017

Toronto three year assessment

We had a great visit to Toronto. We had a quick nap after landing and getting to our B&B and then spent the rest of the day walking around the city. We visited the Kensington Market, all the fabric stores on Queen st., the athletic stores on King st., and then over to Younge to the game store. My feet were so sore by the end of the day. I had coffee with a friend in the afternoon and we had a great visit with family that evening and then I was up early for blood work Tuesday morning.
View from our B&B
I think Tuesday was the quickest appointment day I've ever had in Toronto. I took some knitting and managed to knit a total of two rows all day. Every department moved right along which meant I was able to leave between appointments and actually made it for breakfast at the B&B. 

I made it 698m on my walk test. So close to 700m! I may have gotten there if I hadn't detoured around the man lingering in the hallway. I should've run him over. Or maybe I shouldn't have spent Monday walking 11km on pavement. Either way, it's still up a bit from last year and I know I'm doing well physically so the physiotherapists were happy.

The doctor didn't have much to tell me. My x-ray looked good, my blood work is stable (although my cholesterol is still a tad high), and he was happy with my lung function test results. 

My lung function numbers were the same as they've been in Amherst which is up from last year's Toronto numbers. The doctor did not seem to think much of my "high" in June and July and said the change in percentage is all statistically similar. Boo to doctors crushing my highs! Although that does mean that I haven't really dropped since the summer which is a good thing. Maybe I don't need to jog as much as I think I do.

After the appointments, I had a nap and didn't want to go anywhere so Isaiah got us greasy Thai take-out for supper. We spent the evening eating greasy food, played the board games we bought, and watched X-men. 

On Wednesday we had a quick trip to the St. Lawrence market and the Distillery District Christmas Market before our flight home. 

It was a short and sweet trip! 
Great lunch spot! 
Christmas Market! Everything was adorable. 
Good-bye Toronto! Until next time!

Sunday, 26 November 2017

THREE YEAR LUNGIVERSARY!

IT'S MY THREE YEAR LUNGIVERSARY!!!!!!!!!!! WOOHOO!!!!! Three years since a family made the decision that their loved one would be an organ donor and because of that, I'm alive today. Thank you donor family! Thank you also to everyone who has supported me over the years! Whether through sending me supportive messages, or playing games at the hospital with me, or feeding me, or sending Isaiah and I to plays, we appreciate all of it.

This last year has been fantastic. I ran a 5km in May, spent the summer hiking and camping all over the Maritimes, and was able to leave the country for the first time in years! And, unless something happens in the next month, this will be the first year in eight years where I haven't spend a night in a hospital!

Talking to someone on Twitter yesterday about my lung transplant experience made me realize that the trauma of three years ago is never going to leave me. I still remember waking up from surgery disorientated and panicked. The confusion and my crippling anxiety attacks during my recovery will always be a strong memory.

While the emotion behind the memories have softened over time (writing about it has been the most therapeutic thing I could have done), I hope I never forget how far I've come from before and immediately after my transplant. Nothing about a lung transplant is easy but everything I went through was worth it.

Before my transplant, I never dreamed that I would be now three years out and physically stronger than I have been in a decade. Or that I would be excited about buying a treadmill so I can exercise inside during the cold winter days. I will never be able to thank my donor and their family enough.


We're off to Toronto tomorrow for my three year assessment! It is one full day of appointments and no bronchoscopy (woohoo!). Just a lot of blood work, full work up of lung function tests, walk test, x-ray, and doctor appointment. Nova Scotia has stopped sending some people to Toronto for follow-up assessments after the two year mark if they've been stable. However, with my complications I guess the Toronto doctors wanted to see me, so off I go! I'm not complaining, it's a trip to Toronto!

My lungiversary present to myself was to drag Isaiah out in the cold to the middle of Elgin last week and have a photo shoot under the stars with the talented Alyssa Martin of Alyssa Martin Photography. The pictures turned out even more amazing than I had been hoping.
We're so tiny in this vast ever-expanding universe.

Sunday, 19 November 2017

Discovering the history of diabetes

Last week I listened to the Memory Palace's latest podcast about Elizabeth Hughes and it made me interested in the history of diabetes research and treatment. Like most things, I've only become interested in diabetes research since being diagnosed myself. I was ignorant of how doctors use to treat people with diabetes before the discovery of insulin until last week.

Since reading about how the treatment has been developed, I realize that like most of the medicine keeping me alive, I'm lucky to be born in this era in Canada where double lung transplants happen on a regular basis and insulin is readily available.
Elizabeth Hughes was another person who, like me, was fortunate enough to be born at the right time. Unlike me, whose treatments have been around for years and have been studied and tested on those who came before me, was treated at the exact moment when insulin became available to the public.  
Diabetes has been known to doctors since 869 AD when the pancreas was discovered but no one knew what it did. Progress in understanding the body and diagnosing diabetes was made over the years as doctors recognized the patient's sugary urine and that food played a role but there was no treatment. The life expectancy after being diagnosed with diabetes was one year, if you were lucky. 
A major break-through happened when French physician Apollinaire Bouchardat realized his diabetic patients had fewer symptoms, and actually improved, during the food rations of the 1871 Franco-Prussian War. He developed specialized diets to try and curb the symptoms. Fasting became the new treatment.
Dr. Allen of the Rockefeller Institute in New York took the fasting idea to a new level where children with - what we would now call type-1 - diabetes were hospitalized and basically starved to death for their health. The life expectancy after diagnosis went from one year to possibly three as the children no longer died from their diabetes but instead starvation.

I can't imagine how hard it would've been for the doctors, nurses, and families to slowly starve their children to death out of a willingness to keep them alive an extra few months. All in hopes that a treatment would be around the corner. One child, having gone blind from diabetes, requested some song birds to keep him company as he wasted away in the hospital. His request was granted until he was found to have sugar in his urine and it was discovered he was eating the bird's birdseed as a desperate attempt for food. The birds were taken away and he eventually died of starvation.
Elizabeth Hughes, the daughter of wealthy US senators, was one of these patients admitted to the New York hospital in 1919, at the age of 10 under the care of Dr. Allen. She lived at the hospital for three years and weighed 45 pounds and was eating 405 calories a day by 1922.
In 1921, the breakthrough that everyone had been hoping for finally happened. Dr. Banting and Dr. Best (from Canada) discover that an extract from cattle pancreas lowered the blood sugar of dogs who had been given diabetes (by having their pancreas removed). This meant a supply of cheap insulin was suddenly available and it worked.
The first patient to receive an insulin injection was Leonard Thompson, age 14, at the Toronto General Hospital, on January 11, 1922. Not much is known about him but he, like Elizabeth Hughes, had been hospitalized three years prior, weighed 65 pounds, and was drifting in and out of diabetic comas at the time. His father agreed to the experimental treatment in an attempt to save his life. The first injection didn't do much to improve his health but the second, a more pure injection of insulin worked. His glucose levels were restored to normal and he lived another 13 years before dying from pneumonia at 27.
With that success, Dr. Allen rushed his high profile patient, Elizabeth to Toronto in August 1922, to begin injections. She responded immediately and began to eat a normal diet and gained her weight back. She died at the age of 71.
I feel for all the children who were starving in hospitals who would've died during that window from between when insulin was discovered to when it became widely available in October 1923. Only the families with contacts like Elizabeth were able to get treatment. 
Life is so delicate that the balance between life and death can be such a tight rope that we don't always recognize. It often just comes down to being born at the right time, in the right country, to the right parents.

I sometimes think of all the treatments and medications that are currently being developed and wonder if I'll be around when they become widely available. What treatment might I miss by a year or two that would have changed my life dramatically. And then I realize I need to be thankful that I'm alive in a time where CF treatments were available, and lung transplants, and chemotherapy, and, of course, insulin. 
I took it all for granted when I was diagnosed with diabetes and was given an insulin pen and a glucose monitor. I don't have to draw up insulin in vials, or check my urine for my glucose levels. It's all done with machines that have the capability of connecting with a phone to chart the results. 
Another part of the history of diabetes that I thought was interesting and had long-term effects on the culture of medicine for everyone was that diabetes treatment was one of the first times patients wrestled their care away from doctors. 
"The notion of allowing patients to test their own urine for glucose and calculate their own insulin doses was outlandish to most doctors. Diabetes was the first illness which forced them to cede some medical authority to the patient, said Jean Ashton, one of the exhibit’s curators. With insulin, diabetics suddenly acquired both the right and the responsibility to maintain their own health."
- New York Times, 2003




Sources for this blog post:

http://thememorypalace.us/2017/11/elizabeth/

http://www.nytimes.com/2003/03/16/magazine/the-way-we-live-now-3-16-03-body-check-the-bittersweet-science.html

Sunday, 12 November 2017

Amy update!

Since people keep asking me where Amy is on the transplant process, I thought I would do an update. 

The update is that she's no longer being assessed for a lung transplant and all the earlier assessments that were done has expired. Last year we all thought she would be moving to Toronto within the year. Obviously we were wrong. 

Since being off work, her lung function has stabilized around 30% of the predicted value. Clearly that isn't great but it's now too high to be considered for a lung transplant. The official criteria in Toronto is that your lung function has to be less than 30% and a few years ago Amy would've qualified for a transplant. However, in the last few years the wait list in Toronto has gone from long to longer with more and more people needing transplants and a very low donation rate in Canada (roughly 30% of the population is registered as an organ donor and 20% of families veto the organ donation choice  after their loved one has died).  

Amy, thankfully, has been able to stay relatively infection-free since no longer working which has meant no more hospitalizations. Because her lung failure is a result of scarring and general failure rather than an active infection, there is no feasible way to improve it without a drug like Kalydeco or Orkambi becoming affordable (currently cost is $300,000/year and developed for our CF mutation).

While Amy tries to keep her lungs stable as long as possible, she'll keep drinking coffee and finding cliffs to stare off dramatically.