I wanted to talk to you little bit today about my actual diagnosis and what is has meant for me.
So I mentioned in my first post that I was diagnosed with an Aortic Coarctation and Bicuspid Aortic Valve. It seems like quite a mouthful, I know, I couldn't pronounce it for a good two weeks after I was diagnosed let alone wrap my head around exactly what it meant. Basically Coarctation means "narrowing" and your aorta is the main artery to and from your heart, so it literally means Aortic Narrowing. So basically my Aorta was like a kinked hose, little blood flow and building pressure on the other side so the tissue was becoming weaker. A bicuspid aortic valve means that where there is usually 3 parts of the valve mine has 2 making it vulnerable to leaking. Below is my CHD diagram and my scars for a little bit of reference.
This was all overwhelming and confusing when I first got diagnosed, I didn't know what it was and I didn't know how my body could possibly have let me down like that. Your first instinct is to google, google everything, every detail, every story, However my surgeon gave me the best advice I ever got, "ring me, ring my office staff and ask all the questions you need to, but please please DO NOT google anything!" and I am so glad that he did. even though at first I thought, "surely not knowing what I'm in for is worse right? however, as surgery day drew closer, the less I wanted to know, the less I wanted to talk about it so the internet was definitely a no go zone.
So here I was with a big scary diagnosis that came out of nowhere, and then came the conversation about how to fix it. This is where and probably much to my surprise the only place I really lost it a little bit. Open Heart Surgery was the only fix and unfortunately though not an emergency needed to be done sooner than later. The reason for this is, because of the narrowing, my risk of a stroke or a heart attack were increased dramatically and probably would have happened in the not to distant future. This is caused by damage to the heart due to the pressure it is under. The fix was for the surgeon to remove the narrow piece of aorta, and approximately 2cm each side and replace it with Dacron lining, which is effectively a stretchy tube. This took 6 hours on heart - lung bypass and over a week in hospital including 3 days in ICU.
I was lucky though, as I was older my surgeon went in around my shoulder blade, meaning my scar is on my back and not my sternum. Even though it is not on my chest it is still a reminder everyday that I am one of the lucky ones regardless of how bad it may have seemed. I now am 100% and getting my life back on track, although weightlifting is off limits (damn there goes my illustrious weightlifting career🤷🏼♀️) but in all seriousness I am lucky to have had such wonderful doctors to get me back to where I am.
My case is rare, as it is usually picked up in children, mainly babies, however, I was not diagnosed until I was 19. I was what they call A-symptamatic for many years, meaning I had no I direct symptoms leading them to believe there was a problem contributing to my late diagnosis. However in recent years there was a few symptoms that we didn't know were symptoms until after my diagnosis. For example I suffered with what we thought to be asthma that turned out to be a lack of oxygen supply around my body. I also suffered chronic chest infections, whenever I would get sick it went straight to my chest (winter was a nightmare 🙈) I also had trouble getting and maintaining fit. However the one symptom that led them to my condition was my blood pressure. You might remember from my first post that I was diagnosed on a trip to the doctors after a fall from a horse. It was alarmingly high and despite it being in the family, my doctor didn't like it in a healthy young woman. The other key indicator is low blood pressure in your lower extremities which mine was.
It is a scary thing to put your life in a strangers hands. You don't know whats going to happen, and you do have feelings of not knowing if your going to survive even though you know logically there is no reason it shouldn't be completely fine. I spare a thought for my parents with this part as they had to sit and wait nervously for 6 hours while a man they didn't know performed a major operation they comparatively knew little about. That being said we all came out the other side in one piece and stronger for it.
I am forever grateful for the lessons I have learned from this experience and will continue to advocate for those going through the same uncertain time.
Jess xx
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