When a doctor tells you you have heart failure several things go through your head. The first is an overwhelming sense of relief that SOMEONE FINALLY knows what’s going on, but the second thing is… WHAT?!? That’s exactly what went through my mind and I expect what my husband thought too. After speaking to other patients this seems to be the normal course of things.
So, you may be thinking, well what is this scary thing we know as Heart Failure? The clinical types around you will say it is a condition in which the heart cannot pump enough blood to meet the body’s needs (citation). Reasons why this happen are varied from congenital (genetic) defects, to viral infections, postpartum onset, a result of heart attacks and heart disease, damage from cancer treatments, or in my particular case …. they have absolutely no idea. Although heart disease is in my family, there has been no instance of sudden death and all tests we have done, and all medical systems that we had to compare in the past, thus far have not revealed any secrets.
Over the years I have come across all of these lists that talk about people at risk for heart failure and every one of them always state ‘over the age of 65’. I was diagnosed at 28. So, really, a list of risk factors are just that, a list. Just because you don’t have any of the risks identified on the list, does not preclude you from potentially getting the disease. As a warning, or a message of hope, here’s something about lists of risk factors you should know. Malcolm Gladwell famously wrote about this idea in his book ‘Outliers’:
“Outlier” is a scientific term to describe things or phenomena that lie outside normal experience….In the case of Outliers, the book grew out a frustration I found myself having with the way we explain the careers of really successful people. You know how you hear someone say of Bill Gates or some rock star or some other outlier—”they’re really smart” or “they’re really ambitious?” Well, I know lots of people who are really smart and really ambitious, and they aren’t worth 60 billion dollars. It struck me that our understanding of success was really crude—and there was an opportunity to dig down and come up with a better set of explanations. (citation)
Our crude understanding of success is no different when applied to medicine. Or for almost anything for that matter. This is an exact parallel to the current research in cardiology of which I am intimately aware. Even with all of the technology available, the research being done and procedures being developed, our understanding of the heart and how it works, especially in concert within the body, is still relatively crude, since there are many illnesses that can affect the body. Sure, we know alot about it’s function – at least relative to the fact that its soul purpose is to move oxygenated blood around our body, but our knowledge of HOW it does this and WHY it sometimes fails is pretty limited. Further, ‘successful’ treatment options focus mainly on managing symptoms – much like a cold. So you see, there is plenty of opportunity for doctors to try and ‘dig down’ and come up with a better set of explanations as to why my heart is failing. Of all the doctors I have seen and tests I have taken, from St. Paul’s Hospital to Harvard Medical School I am left with “we have no idea”. I guess I am comforted to know that my care here in BC is just as good as at Harvard ;). All joking aside – my team of doctors are incredible. They are as frustrated as I about all of this. They are only human, after all.
Since my official diagnosis is ‘idiopathic cardiomyopathy’, which in plain English is roughly, “your heart doesn’t pump well and we don’t know why”, I have had to embrace the uncertainty of my illness and of life in general. As a result, Nick and I have thus chosen to keep living our life the way that we want to – without any hesitations – and only minor modifications. Risks are welcomed, resistance is futile. Because, guess what? Everyone’s life is also uncertain, the only difference between us is, we know it.
November 20, 2013 @ 11:10 pm
So, how can we help?
November 19, 2013 @ 11:36 pm
Hi Dan – Thanks for stopping by and reading. Your support means alot!
Here’s what everyone can do: Sign your donor registry form (https://transplant.bc.ca/OnlineReg/bcts.asp) and educate others about this gift.
Learn all you can and share the incredible stories of what the gift of life can mean to others: See http://65redroses.com/ for an incredible story of a young UVic student, Eva Markvoort. I have lots of examples, but her story is particularly touching and inspiring.
Also, if you prefer reading or audiobooks – Dick Cheney’s new book Heart: An American Story is really quite remarkable. I can relate to much of what he has gone through. Placing his politics aside (which are not really discussed in the book) his story is quite inspiring and really shows how he didn’t let his illness define him.
Other than that? Keep doing what you are doing.
🙂
J
November 21, 2013 @ 12:34 pm
Little Jill, So well put, I also have heart dieses and although I have made moderate changes in diet and exercise, I am following your,s and Nicks lead and am living life with out much thought of the dieses. I am proud to you and all of your family. Keep up the good fight. And as they say? “live long and prosper”
November 20, 2013 @ 11:20 pm
wow. this sucks.
thanks for sharing. your perspective is fantastic.
live until you can’t. that is what I am trying to do and I am (knock on wood) a little bit healthy.
malcolm
ps….I follow you on twitter….the post is what led me to your site.
November 19, 2013 @ 11:39 pm
Thanks for your comment Malcolm and welcome! Once I got past the initial shock of it all, and began to process what it means, I now see it as a blessing that quickly cleared the fog from my path. So rather than sit on my laurels and thinking about what I wanted to do with my life. I decided to DO what I wanted to do with my life. I am eternally grateful that my husband wanted to share the same journey.
J
November 21, 2013 @ 10:58 am
Jillianne, You have both of our love and support. Keep living your life the way you want and I know you will reach other milestones.
November 26, 2013 @ 8:45 am
Jill,
You will always be one of the strongest people I know and love. I admire everything about you!!! We should all live life the way you & Nick do. You are truly an example to be followed. Not only are you the cutest couple but the love you have for one another is a medicine for the heart you cannot buy at any drug store. I am glad you have shared your journey & I hope & pray you get a healthy heart soon so your lives can get even better. Love ya sis
Ang
November 26, 2013 @ 10:22 pm
Thank you, Ang. I am speechless… xo
November 27, 2013 @ 5:24 pm
My Darling Girl….you have carried this burden with such grace and taught those who know & love you so much. You are my inspiration to live life with more care & love. Always the teacher…;)
Mom
December 3, 2013 @ 9:21 am
Hi Jill,
I am so inspired by you and I also feel so helpless as I wish I could do something more for you. I have been so lucky to have you re-enter my life as a friend and colleague at UVic. You were one of my highlights from my time spent at the University of Alberta and you are a highlight at UVic now that you are here.
I have had to look life right inbetween the eyes when my mom had and then passed from cancer after two years when I was in my 20s. I also had my father go to the edge with “multiple co-morbidities” about 5 years ago only to have a quint-bypass surgery and he miraculously came back 100% and now is working full-time as an engineer at the age of 80. From those experiences, I learned to live day to day and I think I’ve lost some of that – especially as our job can suck us into politics as you know too well. Know that you are a beacon for positive life changes in others. You make an impact on the lives of others and how we live is inspired by you. You have one of the biggest and most honest hearts around.
Now, I’m not the hippy type, but I was dragged to a tea leaf reader for fun by a friend. The reader told me I had a friend who had some problems internally with one of her organs. She said she has a big heart and cares too much. She then added that, not to worry, she will be ok and will get better. Now, again, I’ve never put much into those things until she predicted that I’d have a fall… and we all know how that went down. Especially poor Nick!
I am always here for you. I am registered as a donor and will make sure my children are registered as well.
Hugs with love,
Valerie
December 3, 2013 @ 1:32 pm
Val,
What can I say?
No words…
xoxo
J
December 8, 2013 @ 11:58 am
Hi Jill,
You are applauded for your courage and determination, never giving up when the going got rough. Just know that we are there for you and you have our full support.
Lowell
December 10, 2013 @ 9:41 pm
Hi Lowell,
I would be nowhere without my family, especially Nick. He is an incredibly courageous, passionate and caring person who has stood by me through all of this. Truth be told it was he who never gave up and if I got close he was there to push me through. I believe all of this is a direct reflection of how you raised him and for that words cannot properly express how eternally grateful to you and to Stan.
Your support means more than I can say.
Love,
J