So I had a Blalock-Taussig Shunt so I'm going to explain this procedure a bit. All the definitions and information are from CACHnets term dictionnary. http://www.cachnet.org/achd_index.html
Blalock Taussig Shunt:
A palliative operation for the purpose of increasing pulmonary blood flow, hence systemic oxygen saturation. It involves creating an anastomosis between a subclavian artery and the ipsilateral pulmonary artery either directly with an end-to-side anastomosis (classical) or using an interposition tube graft (modified).
Palliative operation:
A procedure carried out for the purpose of relieving symptoms or ameliorating some of the adverse effects of an anomaly, which does not address the fundamental anatomic/physiologic disturbance. Contrasts with "repair" or "reparative operation".
Anastomosis:
An anastomosis is a surgical connection between two structures. It usually means a connection that is created between tubular structures, such as blood vessels or loops of intestine.
http://www.nlm.nih.gov/medlineplus/ency/article/002231.htm
Subclavian Artery:
The right subclavian artery extends from the brachiocephalic artery to the right side of the body. The left subclavian artery extends from the aortic arch to the left side of the body.
http://biology.about.com/library/organs/heart/blsubclavianartery.htm
Brachiocephalic Artery:
The brachiocephalic artery extends from the aortic arch to the head. It branches off into the right common cartoid artery and the right subclavian artery.
http://biology.about.com/library/organs/heart/blbrachioartery.htm
Ipsilateral :
On the same side.
http://www.medterms.com/script/main/art.asp?articlekey=4041
So now you know!
From my heart to yours,
Colleen
Wednesday, February 25, 2009
Monday, February 23, 2009
Dedication
As you have maybe seen, the heading of my blog has changed to include a dedication, this post elaborates on it...
This blog is dedicated to a number of people and organizations that have changed, influenced and continue to influence my life in the terms of my Cardiac Condition.
1) The doctors, nurses, surgeons, technicians, play-room staff and so many others in the department of Cardiology at Sick Children's Hospital in Toronto Ontario. Thank you, for saving my life and supporting me and my family for eighteen years. Your dedication and care astound me and I will be eternally grateful!
2) Everyone who prayed for me and my family over the years, especially the members of Tabernacle, St. Matthew's and Eastminister United Church who were there during my surgeries. You're prayers are much appreciated and the strength they provide both me and my family was and is exceptional.
3) CHASE, though no longer in effect this group made my parents feel like they could get through and gave valuable information and support.
4) Edward J. Madden Open Hearts Camp and its staff and participants. The times that I had at this camp were some of the easiest in my life, there was no struggle to fit in when that was all that mattered and the environment was easy, fun and refreshing. To everyone I met there, we may talk rarely but you will all always be very close to my heart, because you guys kinda know what it really looks like! If there is ever a moment where you need a fellow heart patient to lean on, give me a shout and I'll talk, listen, whatever you need, because I know you would do the same for me.
5) The CCHA, Canadian Congenital Heart Alliance. As an adult we tend to get lost in the shuffle, the CCHA works hard to make sure that doesn't happen and supports adult congenital heart disease patients. The conferences that have been organized by the CCHA as well as the links fostered by this group have made me feel less alone in a hard time while I adjust to the adult responsibilities and roles that my life is taking on and compromising that with my CHD.
6) The Toronto Congenital Cardiac Center for Adults. I receive wonderful care here thanks to the doctors and nurses at this clinic. Special mention to my fab cardiologist Dr. A. Redington!
7) The community of CHD patients and parents that I have met on facebook. Oh yeah, you all are so awesome!!
8) Every child that is born with CHD and their parents. Your bravery is mind-blowing.
9) My readers, whether you are CHD, a CHD parents or just a friend or observer, your interest is why I am writing. Thank you for reading!
10) God, my faith may be shaken from time to time but it's so strong. I believe you put me here for a reason and I will stay here and do what I need to do as long as I need to be here and not a moment sooner. This is scary for me but I trust you.
From my heart to yours,
Colleen
This blog is dedicated to a number of people and organizations that have changed, influenced and continue to influence my life in the terms of my Cardiac Condition.
1) The doctors, nurses, surgeons, technicians, play-room staff and so many others in the department of Cardiology at Sick Children's Hospital in Toronto Ontario. Thank you, for saving my life and supporting me and my family for eighteen years. Your dedication and care astound me and I will be eternally grateful!
2) Everyone who prayed for me and my family over the years, especially the members of Tabernacle, St. Matthew's and Eastminister United Church who were there during my surgeries. You're prayers are much appreciated and the strength they provide both me and my family was and is exceptional.
3) CHASE, though no longer in effect this group made my parents feel like they could get through and gave valuable information and support.
4) Edward J. Madden Open Hearts Camp and its staff and participants. The times that I had at this camp were some of the easiest in my life, there was no struggle to fit in when that was all that mattered and the environment was easy, fun and refreshing. To everyone I met there, we may talk rarely but you will all always be very close to my heart, because you guys kinda know what it really looks like! If there is ever a moment where you need a fellow heart patient to lean on, give me a shout and I'll talk, listen, whatever you need, because I know you would do the same for me.
5) The CCHA, Canadian Congenital Heart Alliance. As an adult we tend to get lost in the shuffle, the CCHA works hard to make sure that doesn't happen and supports adult congenital heart disease patients. The conferences that have been organized by the CCHA as well as the links fostered by this group have made me feel less alone in a hard time while I adjust to the adult responsibilities and roles that my life is taking on and compromising that with my CHD.
6) The Toronto Congenital Cardiac Center for Adults. I receive wonderful care here thanks to the doctors and nurses at this clinic. Special mention to my fab cardiologist Dr. A. Redington!
7) The community of CHD patients and parents that I have met on facebook. Oh yeah, you all are so awesome!!
8) Every child that is born with CHD and their parents. Your bravery is mind-blowing.
9) My readers, whether you are CHD, a CHD parents or just a friend or observer, your interest is why I am writing. Thank you for reading!
10) God, my faith may be shaken from time to time but it's so strong. I believe you put me here for a reason and I will stay here and do what I need to do as long as I need to be here and not a moment sooner. This is scary for me but I trust you.
From my heart to yours,
Colleen
Sunday, February 22, 2009
Success!!
So this is a pretty big deal for me. First of all because lately I have been rather out of shape but also because even in the best shape I tend to have troubles. My friends and I went to Montreal yesterday, which was super fun by the way, and we spent a lot of the day walking. Walking up hill, down hill, on slight inclines and declines, on very straight paths, on cobblestone and up and down stairs. Safe to say, there was A LOT of walking...
But here is the success...only twice do I remember being out of breath and not once did I have to stop for what I tend to call a "heart moment" where I needed to take a break. The truly sensational thing about it, is that I had only had three or four hours of sleep the night before (but twelve the night before that). This is HUGE for me. I don't know if anyone without a heart or lung condition can understand this. I hate having to take time to stop and feeling like a burden to the entire group. But from what I can tell, I kept up all day. I was never really lagging behind either, it wasn't as though I was moving super slow.
I get a rep for complaining a lot. Especially about being tired and/or hungry. The thing is, when I am complaining it's because I truly am very tired or I am starting to feel light headed or something. I don't want to be a whiner so this is why I am so happy about this.
Although, I also know, this was just a good day because not every day is like this. Today, I may walk to the bus stop and be so out of breath my heart is pounding in my chest. I never really know. I wish I could.
Oh and, I may have managed to walk all day, but as soon as I got on that bus on the way home, I was out. Guess I was a lot more tired than I had thought!
Friday, February 20, 2009
Scars Scars Scars
I have three major scars, two on my back and one on my chest. I find it interesting that these scars have been nicknamed zippers and the pride that many have stating that they are part of "the zipper club". I have friends that do not have CHD and certainly do not have zippers that have started referring to these scars as zippers as well. This always makes me smile as I feel that they are really trying to enter my world.
The thing with scars, especially the chest scar is that many people are not proud of these scars. For many, this mark on their bodies is not only unwanted but shameful. This really does cause me some distress because I cannot imagine how horrific it must be to live with a mark on your body that you hate, or that makes you feel ugly. It's not the same as the extra weight, the acne or the too small or too big breasts, this is a mark of survival! It makes me think of what my parents told me as a child, this is a badge of honour, this is the only mark of a lot of hard work that surgeons did to keep me alive. When I think of it that way, as the signature of some of the most talented artists on the planet, it just seems beautiful. My heart is a masterpiece and a miracle and my surgeons signed it and left an eternal mark on their hardwork. I am proud to wear that signature!
Even I though have had days when I just wish I had no scars. They don't come often, in fact they are very rare, and usually show up when I am the lowest of lows for some other reason but they occur. This is a poem that I wrote on one of those days, it's called, You Think I'm Not Beautiful:
My scars are power,
unique, life giving,
life saving, bravery,
fear, love, pain,
beauty
But you don't see that,
You stare at them,
You think they are horrendous,
You wonder what terrible accident caused them,
You pity me,
You make me a monster
You want a clean slate,
A clean chest, a clean back,
normal,
beautiful,
safe,
Your thoughts have finally blinded me,
For the first time made me ashamed,
You mask your own insecurities,
by making me feel insecure,
Well **** you!
Look what you've done to me
And if this is not enough,
you also think I am too fat,
to tall, to hairy and too flat chested
You pigs, you should be ashamed of yourselves,
but you're not,
but I'm ashamed of me
I am lucky to not feel like this very often at all. In fact, I tend to tell my girlfriends I like my chest scar because it gives the illusion of clevage. This makes them laugh and me too. See there are plenty of benefits!
I tend to think that my scars are more obvious than they really are. I am sure this is true for many others as well. I think that if I wear a low cut top people are going to see the scar for sure. It doesn't bother me, I like it actually, I like to answer questions and the scar seems to promote them. The thing is, many people don't see it, and if they do its not until I say something about my heart condition. The only time people really notice is when I am in my swimsuit because they see the back scars too. They are more obvious, as they are older so they are slightly more crooked and there are two of them, side by side. Even then, people don't see them right away. This astounds me. I am sure they will see them right away, but they don't.
As a child I was always being told to keep my shirt down. Stop showing off your scar to everyone. I loved to. It generated such interest. I am still this way, although I cover up somewhat. I did post pictures of my scar on facebook however. Many people told me I was brave because of it. I just thought it was cool. I'm going to post my scar pics here as well. Cause, I mean I talked about them enough I really should. :P
There are so many scar stories I could tell but I will leave them for other days. Please, tell me your stories though, or how you feel about your scars. I would love to know, and I am sure other people would too. You're being very brave if you are sharing. It's hard, especially if you are not used to sharing.
From my heart to yours,
Colleen
The thing with scars, especially the chest scar is that many people are not proud of these scars. For many, this mark on their bodies is not only unwanted but shameful. This really does cause me some distress because I cannot imagine how horrific it must be to live with a mark on your body that you hate, or that makes you feel ugly. It's not the same as the extra weight, the acne or the too small or too big breasts, this is a mark of survival! It makes me think of what my parents told me as a child, this is a badge of honour, this is the only mark of a lot of hard work that surgeons did to keep me alive. When I think of it that way, as the signature of some of the most talented artists on the planet, it just seems beautiful. My heart is a masterpiece and a miracle and my surgeons signed it and left an eternal mark on their hardwork. I am proud to wear that signature!
Even I though have had days when I just wish I had no scars. They don't come often, in fact they are very rare, and usually show up when I am the lowest of lows for some other reason but they occur. This is a poem that I wrote on one of those days, it's called, You Think I'm Not Beautiful:
My scars are power,
unique, life giving,
life saving, bravery,
fear, love, pain,
beauty
But you don't see that,
You stare at them,
You think they are horrendous,
You wonder what terrible accident caused them,
You pity me,
You make me a monster
You want a clean slate,
A clean chest, a clean back,
normal,
beautiful,
safe,
Your thoughts have finally blinded me,
For the first time made me ashamed,
You mask your own insecurities,
by making me feel insecure,
Well **** you!
Look what you've done to me
And if this is not enough,
you also think I am too fat,
to tall, to hairy and too flat chested
You pigs, you should be ashamed of yourselves,
but you're not,
but I'm ashamed of me
I am lucky to not feel like this very often at all. In fact, I tend to tell my girlfriends I like my chest scar because it gives the illusion of clevage. This makes them laugh and me too. See there are plenty of benefits!
I tend to think that my scars are more obvious than they really are. I am sure this is true for many others as well. I think that if I wear a low cut top people are going to see the scar for sure. It doesn't bother me, I like it actually, I like to answer questions and the scar seems to promote them. The thing is, many people don't see it, and if they do its not until I say something about my heart condition. The only time people really notice is when I am in my swimsuit because they see the back scars too. They are more obvious, as they are older so they are slightly more crooked and there are two of them, side by side. Even then, people don't see them right away. This astounds me. I am sure they will see them right away, but they don't.
As a child I was always being told to keep my shirt down. Stop showing off your scar to everyone. I loved to. It generated such interest. I am still this way, although I cover up somewhat. I did post pictures of my scar on facebook however. Many people told me I was brave because of it. I just thought it was cool. I'm going to post my scar pics here as well. Cause, I mean I talked about them enough I really should. :P
There are so many scar stories I could tell but I will leave them for other days. Please, tell me your stories though, or how you feel about your scars. I would love to know, and I am sure other people would too. You're being very brave if you are sharing. It's hard, especially if you are not used to sharing.
From my heart to yours,
Colleen
Tuesday, February 17, 2009
Tetralogy of Fallot
Definition:
Tetralogy of Fallot is a combination of four heart defects that often happen at the same time. The defects include a hole between the ventricles (a ventricular septal defect) which allows oxygen-poor blood to mix with oxygen-rich blood; narrowing of the outlet to the pulmonary artery (and sometimes an abnormal pulmonary valve) which partially blocks blood flow from the right ventricle to the lungs; an aorta that straddles the wall between the ventricles, allowing oxygen-poor blood to flow through the ventricular septal defect and into the aorta, and thickened and enlarged heart muscle tissue in the right ventricle.
Tetralogy presents with cyanosis except when it is Pink Tetralogy of Fallot where there is increased pulmonary blood flow and less cyanosis.
Pentalogy of Fallot includes everything that is found in Tetralogy of Fallot along with ASD or PFO
PFO - Patent Foramen Ovale (Definition from the Mayo Clinic http://www.mayoclinic.com/health/patent-foramen-ovale/DS00728 )
In normal fetal development, a small, flap-like opening — the foramen ovale (fo-RA-mun o-VA-le) — is present between the right and left upper chambers of the heart (right atrium and left atrium).
The foramen ovale usually closes within the first or second year of life. However, in at least one out of four people, this opening persists throughout life. This condition, called patent foramen ovale (PFO), may allow blood to flow from the heart's right atrium to the left atrium and vice versa.
ASD - Atrial Septal Defect (Mayo Clinic - http://www.mayoclinic.com/health/atrial-septal-defect/DS00628)
An atrial septal defect (ASD) is a hole in the wall between the two upper chambers of your heart. The condition is present from birth (congenital). Smaller atrial septal defects may close on their own during infancy or early childhood.
Cyanosis - (Texas Heart Institute - http://www.texasheartinstitute.org/HIC/Topics/Cond/cyanosis.cfm)
Cyanosis is a condition in which the lips, fingers, and toes appear blue. It happens in some people with congenital heart defects that cause the blood to circulate abnormally.
I will try and come up with a more personal post at some point soon.
From my heart to yours,
Colleen
Sunday, February 15, 2009
Basic Heart Terms
In order to learn as much as I can about my own condition and conditions of others I started to compile a few basic definitions. Things that are simple and need to be understood before more complex ideas such as defects and surgeries can be examined. These are a few, chances are you may already know them but it's good to have working definitions!
Aorta: The large artery that receives blood from the heart's left ventricle and sends it to the body.
Atria/Atrium: The two upper collecting chambers of the heart. The right atrium collects blood from the body. The left atrium collects blood returning from the lungs by way of the pulmonary veins.
Ventricles: The lower pumping chambers of the heart. The left ventricle pumps blood to the body, while the right ventricle pumps blood to the lungs.
Mitral Valve: The heart valve between the left atrium and left ventricle. It normally has two leaflets, or cusps. It stops blood from flowing back into the left atrium after it has been pumped into the left ventricle.
I do plan to continue to compile definitions but I promise you that is not all you will be hearing from me over the next little while, because let's face it, that would be kinda boring.
Aorta: The large artery that receives blood from the heart's left ventricle and sends it to the body.
Atria/Atrium: The two upper collecting chambers of the heart. The right atrium collects blood from the body. The left atrium collects blood returning from the lungs by way of the pulmonary veins.
Ventricles: The lower pumping chambers of the heart. The left ventricle pumps blood to the body, while the right ventricle pumps blood to the lungs.
Mitral Valve: The heart valve between the left atrium and left ventricle. It normally has two leaflets, or cusps. It stops blood from flowing back into the left atrium after it has been pumped into the left ventricle.
I do plan to continue to compile definitions but I promise you that is not all you will be hearing from me over the next little while, because let's face it, that would be kinda boring.
Saturday, February 14, 2009
CHD Awareness Day
HAPPY CONGENITAL HEART DISEASE AWARENESS DAY!!!
There are so many ways to celebrate:
-Wear red, pink and blue
-Tell someone about your experience as/with a CHD patient
-Ask someone about their experience as/with a CHD patient
-Show off your scars
- Pray for CHD patients
-Donate to one of the many wonderful CHD charities
-Hug a Heart Kid!
-Look over heart camp photos
-Contact one of your heart camp/community/hospital/facebook buddies
And have the best possible day you can! I am sure though, that for many of us everyday is CHD day!
From my heart to yours,
Colleen
There are so many ways to celebrate:
-Wear red, pink and blue
-Tell someone about your experience as/with a CHD patient
-Ask someone about their experience as/with a CHD patient
-Show off your scars
- Pray for CHD patients
-Donate to one of the many wonderful CHD charities
-Hug a Heart Kid!
-Look over heart camp photos
-Contact one of your heart camp/community/hospital/facebook buddies
And have the best possible day you can! I am sure though, that for many of us everyday is CHD day!
From my heart to yours,
Colleen
My Old Prom Dress and Shunt Scars
So last night I went out with some friends to go bowling in formal dress, I, like a few other girls decided to bring out the old prom dress. It was a fun event but it reminded me of the oddest situation involving my scars. When I went out to buy my prom dress I saved up several hundred dollars in order to be able to buy a fancy dress, well gown really. I tried on A LOT of gowns but decided upon a gorgeous black and white strapless gown. This is when the wierd thing happened, my mom asked me: "Are you sure you feel comfortable showing off all your scars like that?"
I was confused, the reason that I have so much body confidence about my scars is that my parents worked really hard to teach me that they are beautiful, special and unique and here is my mother asking me if I feel comfortable showing my scars. I turned to her and was like: What? Of course I'm okay with that. Why wouldn't I be? I think my mom was confused about her question as well, but it's true not that many people have seen the scars in the back and I think she just wanted me to be able to concentrate on having fun and not have everyone asking about them. Something I have come to understand though is that not everyone really notices and when they do, if they ask, I am more than happy to answer questions about it.
From my heart to yours,
Colleen
I was confused, the reason that I have so much body confidence about my scars is that my parents worked really hard to teach me that they are beautiful, special and unique and here is my mother asking me if I feel comfortable showing my scars. I turned to her and was like: What? Of course I'm okay with that. Why wouldn't I be? I think my mom was confused about her question as well, but it's true not that many people have seen the scars in the back and I think she just wanted me to be able to concentrate on having fun and not have everyone asking about them. Something I have come to understand though is that not everyone really notices and when they do, if they ask, I am more than happy to answer questions about it.
From my heart to yours,
Colleen
Friday, February 13, 2009
Trial Run
If you do actually read this, please give me a heads up, I'm seeing how many people will actually read this to base on if it is worth keeping up. I have been trying to reach out to the CHD community online in a variety of ways over the years. The most successful so far being through facebook but I do feel like it would be interesting to give blogging a try. So please do comment, if only to give me a heads up that you have been reading!
From my heart to yours,
Colleen
From my heart to yours,
Colleen
My Story
I have often found when I meet Congenital Heart Disease patients that amoung the usual introductions of our names, where we're from, what we do and how we're doing that day there is also the explanation of what we have/had and the procedures we've gone through that have got us to this point. This is, therefore, what you will hear from me today. In the future I hope to outline various events in my life that pertain to Congenital Heart Disease, various different forms, other people's stories (if you choose to share them with me), different definitions as well as events I have heard about through the various CHD communities I am a part of.
So here's my story:
I'm Colleen, I currently live and study in Ottawa at the University of Ottawa. I study Women's Studies and Philosophy and I love both of those subjects, but possibly Women's Studies a bit more than Philosophy. And today I am good but sleepy as I have been living the good life of a student, finishing papers and partying until 2am.
But, let's get to the good stuff!
I was born with Tetralogy of Fallot and was rushed by helicopter from the hospital in my hometown to Toronto Sick Children's. Fourteen days later I had my first surgery, a Blalock-Taussig Shunt. This was followed about a year later with a Glenn Shunt. It was somewhere around here that the doctors found the Mitral Straddling, another complication on top of Tetralogy of Fallot. This meant that the standard Tetralogy of Fallot repair could not be done. Instead they started a two stage Lateral Tunnel Fontan procedure. My fourth (and final so far) surgery was the second stage of the Fontan which I had when I was five years old.
Being twenty now I am officially (and have been for two years) to old for Sick Kids so I am at Toronto General Hospital but I really only need to visit them once a year. I just went back in January and everything is looking good. I love it when they say that!!
From my heart to yours,
Colleen
Oh yeah, don't forget Congential Heart Disease Awareness week this week and CHD day tomorrow!!
So here's my story:
I'm Colleen, I currently live and study in Ottawa at the University of Ottawa. I study Women's Studies and Philosophy and I love both of those subjects, but possibly Women's Studies a bit more than Philosophy. And today I am good but sleepy as I have been living the good life of a student, finishing papers and partying until 2am.
But, let's get to the good stuff!
I was born with Tetralogy of Fallot and was rushed by helicopter from the hospital in my hometown to Toronto Sick Children's. Fourteen days later I had my first surgery, a Blalock-Taussig Shunt. This was followed about a year later with a Glenn Shunt. It was somewhere around here that the doctors found the Mitral Straddling, another complication on top of Tetralogy of Fallot. This meant that the standard Tetralogy of Fallot repair could not be done. Instead they started a two stage Lateral Tunnel Fontan procedure. My fourth (and final so far) surgery was the second stage of the Fontan which I had when I was five years old.
Being twenty now I am officially (and have been for two years) to old for Sick Kids so I am at Toronto General Hospital but I really only need to visit them once a year. I just went back in January and everything is looking good. I love it when they say that!!
From my heart to yours,
Colleen
Oh yeah, don't forget Congential Heart Disease Awareness week this week and CHD day tomorrow!!
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