Saturday, October 24, 2009

Organ Donation, some facts

Organ donation is quite close to my heart since as I write this my sister is waiting for a double lung transplant. But if I think back, I have had a number of run-ins with the need for organs in my immediate circle of friends and acquaintances. A coworker a number of years ago needed a bone marrow donor and never received it and passed away from the cancer. A friend of mine generously donated a part of her liver to give a anonymous child a chance to live (one of the most incredible acts ever to be honest). And now I have someone that needs a transplant to simply continue her life. It is that simple for the 4000+ Canadians that are waiting for organs and Natalia and I have met a number of them while attending her physio sessions at TGH. These are just people that want to continue with their lives. Some are like Natalia, who has known that one day she will need a transplant while most developed their disease later in life. This happens and it happens in a lot of families, yet organ donation is almost never discussed in a family setting.

I think that needs to change. In my very unscientific study, I really believe that most people are in favour of organ donation, and want to donate their organs at the end of their lives, but few sign their cards or even better, discuss their wishes with their loved ones. This will make all the difference in my opinion, and one day that decision will give someone a chance to live. Very few acts, especially ones that are this simple, can have such drastic outcomes, sign a piece of paper - one day a bunch of people live. Wow.

I also think that our governments need to treat this topic more seriously, as we all live longer and longer, I think the need for organs will increase will dramatically increase. Some countries have gone with the automatic opt-in system, meaning that unless you explicitly specify, your organs will be donated. Most countries are have not done this and like Canada depend on the very very few that donate. Here are some stats about organ transplants in Canada (2008)
  • There were 4330 people on the waiting list for an organ transplant.
  • 215 people died while waiting for an organ transplant.
  • 2083 trasplants took place. 1541 of those transplants were made possible because of deceased donors.
  • 80 people can benefit from a single donor.
  • Canada consistently has one of the worst organ donor rates of industrialized countries: about 13 donors per million people, compared with 20 per million in the U.S., and more than 31 per million in Spain (and Canadians think we are better than everybody.... i am not a doctor or a statistician, but this number of 13 is too low by many factors)
Those seem like quite low numbers to be honest, in a country with over 35 Million people (and i remind you that everyone dies at some point), I think there should be plenty of organs available for the 4000+ that are waiting. This Wikipedia article addresses a lot of the statistics worldwide.

So... go speak with your family and make sure they know and respect your wishes. It could save someones life.

Tuesday, October 20, 2009

3 Weeks today... Sweet God.

So it looks like 3 weeks from today i will be a father. I have known that this day is coming for quite sometime... 8 months roughly, but really until you get close, it doesn't quite sink in. The only feeling like this that i have ever experienced (fear, mixed-in with excitement) was when i was doing the Ironman (by the way i am not comparing a pregnancy to a stupid triathlon). I trained like crazy for a very long time, was anxious about the race, but I just kept doing the training not thinking about what the race really is. Not even before the race did it really dawn on me what i am about to do, swim 4k, bike 180k and run a marathon, 42k. The specific moment that reminds me of what i am feeling right now, is about 175k into the bike, when i thought, NOW i have to run a marathon.... I knew what i had to do and was ready, but the reality didn't really set in. This feels very similar, i really knew that i was having a baby, girl, but now, 3 weeks today it suddenly feels incredibly real. I am so excited, going through the last 8 months, watching Angie change a little bit each day has been amazing. During this time, natalia welcomed Scarlett into our family and this has given me some exposure to babies, and let me tell you that i am by no means a natural. I really don't know how i will manage this first little part, but I am very happy that Angie has the confidence and experience. I have got to spend a fair bit of time with Scarlett over her first 3 months and even fed her once or twice and these experiences have been traumatic for me, I am sure this will get better, but I have a feeling it will be a funny start during which i sit and watch the baby sleep to make sure everything is ok. At this I have considerable experience as I have spent a nite or two at St. Mikes watching Natalia sleep. For many hospital visits I have been the Night Man.

I am very eager to start and learn and be totally involved in her life. I have always wanted to be a father would have had children 10 years ago, but was never in a situation that felt right. I am now, and couldn't be happier about what is about to happen 3 weeks for now. I am already in awe of the fact that we have managed to create life and simply can't wait to meet my daughter (there is only so long you can talk to a belly, but i have put in some good hours of "conversation"). So that's the update for now. I just can't wait, so please wish us luck.


Sunday, October 18, 2009


Happiness in my opinion is a very funny thing. When you have nothing in life to be unhappy about, well, during that time a lot of us are quite unhappy. Only when life hits you and shows you what real unhappiness could be, only at that point, you realize that you might have wasted a bunch of years. Perspective is key to seeing all this, and taking joys in life when they are there is very important. Over the last number of months, happiness should be difficult to find, with Natalia at war with her CF, the seemingly endless wait for those lungs, you would think that these would be miserable months... and don't get me wrong, things are really tough, and so tough for Natalia who is in the middle of all of it. BUT, also these last few months have had so much joy, with Scarlett joining our family, Angie joining the family officially yesterday (yes we got married) and our daughter on the way in 5 weeks. These months have made us all closer, all focused as a family. I have seen my niece way more than i would under other circumstances, and have spent some great times with Natalia going to her pre-transplant physio at TGH. I really looked forward to each of those sessions, and i really hope that Natalia regains her strength and we can go and continue the workouts.

A good friend of mine, that i won't name here, went through a very traumatic near death experience in his immediate family (out of nowhere). He said something a few weeks ago that really touched me: "life happens when you are making plans".... Crazy, we are always planning for the future, chasing stuff and we ignore a lot of things that are happening today. I wish we didn't need near death reminders to think about life and what is important.

Get some rest sis and lets keep praying for those lungs.

Friday, October 16, 2009


This is my first blog, i have been reading my sister's blog for quite some time, but really have no idea what i should write about. She has an incredible blog at As you can see i am really quite creative taking Wow, this blog might be awesome :( I will be shocked if i ever have more than 3 people reading this.

So a little bit about me, i am in my mid 30s and have thought about doing some blogging for some time, mostly because of my sister. Reading her blog has brought me a lot of great moments, as well as many very sad ones reading about her struggles with Cystic Fibrosis (CF). CF is a tough little disease, you can find out more about it on Wikipedia, but i would just describe it as relentless and unforgiving, it just keeps going at your lungs and other organs and it doesn't give up. As a brother of someone who fights this disease every day, i have a lot of weird feelings about it, to start, i am the one who got lucky in the Genetics Lottery that is life. My parents both being carriers had me first who was perfectly healthy (3 of 4 chance), and my sister who wasn't (1 in 4 chance). Well, that is just not fair and my parents didn't have any way of knowing that especially if your first child is healthy. I don't feel guilty about it, but that thought, of the sheer luck in that, has been a huge part of the way i live and the way i think about everything. It is just luck, not up to you at all.... sometimes you win, sometimes you lose.

I think you should be happy when luck is on your side (but don't take too much pride in it) and when it isn't (which happens to all of us at some point in life), fight and hope that you have some good luck next, that's about all you can do.

My sister's life has truly been incredible through all the complications, hospital visits, treatments, physio, IVs, Emergency Rooms, month long hospital stays, etc, etc, that come with having a Terminal Disease like CF. Despite that, she has managed to build an incredible life that includes a great husband and a stunning daughter (you can read all about it on her blog, i wouldn't do it justice). All that is something to be very very proud of.

So at this point as her battle against the late stages of CF continues, we hope for some good luck, in the form of a lung donor. She is listed and waiting for a double lung transplant and has been on the list for over 2 months and now waiting it out in the hospital. These are tough times, but i really do think she will get lucky on this one.

In future blogs, as i get better at this, i will discuss what it's like being a sibling of someone with a terminal disease and since I am getting closer and closer to becoming a parent myself, i am sure i will talk about being a parent. Thanks for reading my first blog, i hope this gets easier.
Copyright 2009 John and Angie. Powered by Blogger Blogger Templates create by Deluxe Templates. WP by Masterplan