Thursday, April 16, 2009

It's been awhile

I apologize for the amount of time it's been since I have posted anything. With exams and final projects and the first sunny days of the year I have been rather busy. So I will simply link you to a story of how awesome the technology that is being developed for heart disease patients (congenital and acquired in this case) is. The link is thanks to my friend Francine who posted it on her facebook but I am sure she would have no issues with me spreading it far and wide. After all with CHD the more information out there the better.

Healing A (Literally) Broken Heart -CBS News April 11th
-Okay so my blog is having issues so you'll have to copy/paste the link-

http://www.cbsnews.com/stories/2009/04/11/eveningnews/main4937036.shtml

I will be back full force after the conference in May!! (woo!!)

ps. It's lovely being able to wear strapless and halter tops in order to get those back scars out in the sunshine again!

Tuesday, March 24, 2009

Conference Time!

So I finally got the very exciting registration form for: The 4th Annual Toronto Congenital Cardiac Patient Conference. Needless to say I am excited.

Okay, sure, last year when I went it raised some really tough questions for myself, but in asking and thinking about these questions I have grown to be a better and stronger person. So though it's tough I think it's good. Last year I went alone, as usual but this year I am wondering if I would like someone to come with me. A friend or something maybe, a little additional support and also a chance to hang out and have in Toronto, because Toronto is really pretty fun, especially with friends.

So the conference is on May 9th 2009 in Toronto and some of things I am really looking forward to are:

My Lifetime of Memories and Lessons - John MacEachern (director of the CCHA)

What's in it for us: How research Helps Congenital Heart Care -Candice Silversides

Going to Parliament for CHD - CCHA

Sex, Drugs & Rock 'n' Roll...and You! (break out session)
Congenital Patient Group: How Do We Increase Awareness (breakout session)
Sports & Exercise in Congenital Patients (breakout session)

If people are interested in getting more information about this conference let me know and I can get it. It costs 40$ Cdn. and of course you have to provide your own accommodations but there are rooms available at a discounted price but they need to be booked by April 9th.

I will be taking notes and blogging in detail about the Conference in the days following it.

Thursday, March 19, 2009

Talking About It

So I had a couple conversations about my heart condition with people today and I haven't really reflected fully on it. It's late so I don't think I will for a little while but I just wanted to ask those who are reading or who feel comfortable enough with responding: How do you feel about answering questions?

I almost always am completely up for it. I see it as an opportunity to advocate for Congenital Heart Disease, and educate others. The more I know the more I can explain, so it also forces me to educate myself.

I think I may make it a regular thing to post about talking about my heart condition and my experiences with it. Let me know if this sounds like a good idea. If I don't hear from you I will still do it, but I would like input.

Thursday, March 12, 2009

Yay Spring is almost here...

I don't know about everyone else but spring is easily my favorite time of year heart-wise. Mostly because it is wonderfully warm (or it will become wonderfully warm) without being too hot and difficult to breathe.

Seasons present challenges to me. Winter includes snow which when walking somewhere provides another obstacle to make things more difficult so I tend not to like it. Of course when it gets really cold it is also hard to breathe.

In the Summer of course there is to much humidity which makes it super hard to breathe, as well as smog which sucks! Although I don't have mobility issues in the Summer which is nice.

So Spring is awesome not just because of being able to breathe better, get around better and the like but because it reminds us that out of the coldest, most dead season there is always life. And I think that reminder of the gift of life is something that I need to think about from time to time.

Wednesday, March 4, 2009

Edward J. Madden Open Hearts Camp



Okay so I am sure I could on forever and ever and ever about this camp. It was paradise to me for three years and looking back on it it was certainly one of the more meaningful summer experiences that I have taken part in.

In order to best talk about this experience I am doing so while flipping through a photo album that I have that captures at least some of the many memories that I have from camp. I have a journal that has a few dialogues that were written by giddy girls about certain boys (counselors) but in order to maintain the privacy of young girls' fantasies I will not publish them. Though I want to. :P

The camp has very few buildings as there are very campers per session as compared to a religious camp for example. There are about 30 kids per session in two bunk houses (girls/boys). There is also a rec hall that was the favorite location of many due to games like pool, air hockey and Foosball as well as air conditioning! There is also the main house which is where we ate and also where the nurse's office was located. There was also a a drama shed up the hill and a tiny crafts building located behind the rec hall. The camp is set in the Berkshire Hills in Massachusetts and is very beautiful with the Hills all around it. Monument Mountain is located nearby which is one of the taller peaks in Hills (from what I remember) and is also hiked by some of the campers who want a challenge (I believe I did it all three years, quite a climb for someone who can get out of breath walking upstairs!) I also recall creating a legend about Monument Mountain but I don't remember it, I think it had something to do with it being haunted by someone who fell down the side of the mountain. I definitely told it at campfire though.

The thing I remember most from the rec room was that for about an hour we were left more or less unsupervised as the counselors were outside the rec room having a meeting. So this is where much of the "dating" occurred. I mean just cause we're heart kids doesn't mean we're not crazy high on hormones! :P There was a lot of dancing that happened and general kiddish flirting. Funny how some of this still applies today, "__insert boys name___ can you help me, I don't know how to shoot pool" guy wraps his arms around you to show you how to hold the pool cue. Oh yeah, it was that shameless. (Okay so maybe this is not the best way to advertise the camp, I promise we did more than flirt! )

We were lucky enough to have small numbers so that we could go on trips. Some notable outings include Shakespeare plays at the local theater, a trip to the Norman Rockwell museum and picnics on the lawn at Tanglewood listening to the Boston Symphony Orchestra warm up for an evening concert. These were all really cool cultural events!

The really interesting thing about physical activity at Madden was that there was no time when people could not participate. Everything was made so that we were challenged but accomodated. We palyed soccer but we had a lot of sub-ins and had breaks every ten or so minutes. We climbed the mountains but did it slowly. Lots of snack breaks and water breaks were provided and there were incrediably passionate staff members that made the whole experience really easy for kids who were used to not being able to participate and feeling left behind.

As I have mentioned in the dedication post earlier, one of the super things about Madden was the fact that I can still rely on my friends from that camp if a heart thing comes up. They have all been there, they know what it's like and we can still support each other. Even though we may not see each other often or at all ultimately we know we have friends that can back us if things get really bad. When I feel alone with my heart condition camp memories can get me through and that is probably the most precious thing of all.



At the top of Monument Mountain!!! Go GIRLS!!

Monday, March 2, 2009

Stem Cells

So I try and follow stem cell research in general because I believe that there could be so much potential with stem cells in order to treat cardiac conditions. My dream for some time is that transplant patients be able to have their own cells used to regenerate the heart. This is by no means growing a new heart but this new more ethical method of harvesting stem cells is promising. There are so many social barriers that are keeping stem cells from being researched and worked with that this development could seriously change the face of the research. I'll let you do some reading and please comment and discuss, I think this is something that could generate a fair amount of discussion both in the health and social senses.

This article is from the Washington Post: http://www.washingtonpost.com/wp-dyn/content/article/2005/08/21/AR2005082101180.html
I first heard about though on CTV Canada AM.

Skin Cells Converted to Stem Cells

Scientists' Work Could Clear Moral Hurdle to Embryonic Research

By Rick Weiss
Washington Post Staff Writer
Monday, August 22, 2005; Page A01

Scientists for the first time have turned ordinary skin cells into what appear to be embryonic stem cells -- without having to use human eggs or make new human embryos in the process, as has always been required in the past, a Harvard research team announced yesterday.

The technique uses laboratory-grown human embryonic stem cells -- such as the ones that President Bush has already approved for use by federally funded researchers -- to "reprogram" the genes in a person's skin cell, turning that skin cell into an embryonic stem cell itself.

The approach -- details of which are to be published this week in the journal Science but were made public on the journal's Web site yesterday -- is still in an early stage of development. But if further studies confirm its usefulness, it could offer an end run around the heated social and religious debate that has for years overshadowed the field of human embryonic stem cell research.

Since the new stem cells in this technique are essentially rejuvenated versions of a person's own skin cells, the DNA in those new stem cells matches the DNA of the person who provided the skin cells. In theory at least, that means that any tissues grown from those newly minted stem cells could be transplanted into the person to treat a disease without much risk that they would be rejected, because they would constitute an exact genetic match.

Until now, the only way to turn a person's ordinary cell into a "personalized" stem cell such as this was to turn that ordinary cell into an embryo first and later destroy the embryo to retrieve the new stem cells growing inside -- a process widely known as "therapeutic cloning."

That prospect, like others in the promising arena of human embryonic stem cell research, has stirred strong emotions among those who believe that days-old human embryos should not be intentionally destroyed.

Embryonic stem cells are capable of becoming virtually any kind of cell or tissue and are being intensely studied around the world as the core of a newly emerging field of regenerative medicine, in which researchers hope to grow new tissues to revitalize ailing organs. Although human embryonic stem cells have never been tested in humans, some researchers expect human clinical trials to begin within a year or so. Researchers caution, however, that like many other nascent therapies that initially seemed promising, stem cells may never live up to their promise.

If some lingering, and potentially daunting, uncertainties can be dealt with successfully, the new technique "may circumvent some of the logistical and societal concerns" that have hampered much of the research in this country, Chad A. Cowan, Kevin Eggan and colleagues from the Harvard Stem Cell Institute report in the Science article.

More immediately, the new work could have an impact on Capitol Hill, where the Senate is poised to vote on legislation -- already passed by the House -- that would loosen Bush's restrictions on human embryonic research.

Last month, Senate Majority Leader Bill Frist (R-Tenn.) surprised many of his colleagues by announcing he would break with the president and support the Senate bill, which Bush has promised to veto.

Some opponents of relaxing the current restrictions have argued that new techniques will soon eliminate the need to use human eggs or embryos to make cells that are, for all intents and purposes, human embryonic stem cells. They and others have for some months predicted that if such new findings were to emerge, they could shift the balance of votes in the Senate.

The researchers emphasize in their report that the technique is still far from finding an application in medicine. Most important, they note: Because it involves the fusion of a stem cell and a person's ordinary skin cell, the process leads to the creation of a hybrid cell. While that cell has all the characteristics of a new embryonic stem cell, it contains the DNA of the person who donated the skin cell and also the DNA that was in the initial embryonic stem cell.

At some point before these hybrid cells are coaxed to grow into replacement parts to be transplanted into a person, that extra DNA must be extracted, the researchers write.

The team describes this task as a "substantial technical barrier" to the clinical use of stem cells made by the new technique.

They do not mention that several teams, including ones in Illinois and Australia, have said in recent interviews that they are making progress removing stem cell DNA from such hybrid cells. None of those teams has published details of their results. But several leading researchers have said they believe it will be feasible to remove the extra DNA.

Some even suspect that the new technique for making personalized stem cells would still work even if the "starter" stem cells' DNA were removed before those cells were fused to the skin cells. It is not clear whether the genetic reprogramming imposed upon the skin cells by the fused stem cells requires the initial presence of the stem cells' DNA, or whether fluids in the initial stem cells can do the job themselves.

"Their data are certainly very good . . . and quite significant," said John Gearhart, a stem cell researcher at Johns Hopkins Medical Institutions. But the extra DNA "is problematic."

"I think we have to keep our eye on the ball here," Gearhart said. "If this stuff proves to work, that's wonderful. But we're just not there yet, and it's going to take a long time to demonstrate that. Meanwhile, other techniques already work well. So let's get on with it."

Still, it is fascinating, Gearhart said, to see such good evidence that something in embryonic stem cells is able to turn an ordinary skin cell into the equivalent of an embryonic stem cell -- a genetic alchemy apparently accomplished by turning key genes in the skin cell either "on" or "off."

Even if the work does not lead directly to clinical applications, he and the Harvard researchers said, it is likely to boost the amount and quality of research into what stem cells really are and how they work.

Wednesday, February 25, 2009

Blalock-Taussig Shunt

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

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

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

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.

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

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

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

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!!