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