When I was 13 years old I was diagnosed with a disease called Ulcerative Colitis. When you are in 8th grade and trying to fit in and be "normal" being told you are anything but that and have to get tests done where they stick a tube inside of you from a not very...proper..opening is pretty intense. Thankfully I have been on medicine, have had more colonoscopies than a 26 year old should, have learned how to manage it so I don't get flare ups. I can remember being 13 and have this doctor tell me that there is a possibility of having a colostomy bag attached to me (talk about the freaking out that came with that!) I also remember hearing the other scary C word...that if I don't take care of myself and be smart about this, it could spread and become colon cancer. That was 13 years ago, and I can happily say that I have learned how to not stress myself out too much, what I should eat and shouldn't eat, I have learned to manage it. I'm now on the "2 year plan" of colonoscopies and my last one my specialist said looked great. He wished all his patients were that easy.
I can handle that. It's something I can mostly control and monitor. I met with the cardiologist yesterday. The results are in. The murmur, the EKG, the Echo test all point to the same thing. I have what's called a "Bicuspid Aortic Valve"...here's a picture, which is the easiest way to understand it.
So the top picture on the right is what a normal aortic valve looks like. The bottom is what mine looks like. Meaning, sometime when my heart was being formed when I was a teeny tiny baby one of the "leaflets" merged or fused with another one. My whole entire life these 2 cuspids have been working the job of what 3 cuspids are supposed to do (I guess even my heart knows how to step up and fill in when something isn't going right) If you've ever done a job of 3 people all by yourself you know how tiring it is. So now, my valve is not opening as much as it should, it's not allowing the proper amount of oxygenated blood out. I have what's called stenosis, which is calcium deposits in the cuspids. These are narrowing it. And then when that happens there's regurgitation, the oxygen ready blood goes back into my heart, causing my heart to pump again to get that blood out to the rest of my body.
That's why I get out of breath by just walking up the stairs, or walking around a store and talking to a friend. My heart is working extra hard to make sure my whole body is getting the oxygen it needs.
Whew an answer!
My cardiologist was really good about it, probably because he was afraid of what a girl all by herself getting this kind of news would do (but in my brain, I overreacted a little too much and expected him to tell me I had 6 months-1 year to live...I was handling the news pretty well because anything is better than that). He said that in the next 5-10 years I will have to have surgery to fix it.
We talked a little bit more and explained a bit more about my heart and how I will need to come in every 6 months or a year to check up and I'll have to get more ECHO tests (which are the cool ones that show an ultrasound of your heart) and then he said the big words...Open Heart Surgery
I don't know why I didn't even think about it, in my brain I had pictured them cutting around my ribs with cool little gadgets and fixing it...nope.
So I asked if there was ANYTHING I could do, change in my diet, different type of exercise, anything to help my heart out and slow down the narrowing. He just looked at me and shook his head. Said I just need to stay healthy and when it's time, it's time. It's not a matter of IF but WHEN I have to have surgery...in the next 5-10 years. I was taking notes like crazy and didn't really have time to process it, just relief that it's fixable with surgery. And that my prognosis was a long life. (which I already had a clue about...I'll talk about that later).
I left and immediately called my sister and brother in law who both have a medical background...and then made phone calls to everyone else in my family to let them know. Because this is a congenital thing, it's something I was born with. It's nobody's fault that I have it, but it is common in families (not like crazy crazy common, but it happens)
So there you have it. A bicuspid aortic valve, working it's little leaflet off to get the right amount of blood to my body. Ticking away...until it's too tired to keep doing it all on it's own. And by then technology will be so advanced it really will be a small incision and cool gadgets putting a new valve in to help me out so I can continue to live and go on all my adventures for a really, really long time. Until then, I will keep on keeping on and never let a moment pass me by, all the while letting my heart tick away. Why live in fear when you can smile and enjoy the journey?
This is a pretty long post so TUNE IN NEXT TIME: We'll see how Natalie really is coping and how her outlook on life and faith in Heavenly Father keep her from giving in to the chest pain and shortness of breath.
****I've done a lot of reading, mostly medical websites, about this if you would like to learn more here are a few good ones that I felt explained it pretty well and not so much in a scary way :) PS don't read too much...it does get scary. I have a cardiac MRI on Friday because they want to check something with my actual Aorta and the ECHO doesn't show that. The picture isn't complete just yet.
http://my.clevelandclinic.org/heart/disorders/bicuspid_aortic_valve_disease.aspx ---This one talks a lot about the disease, Dr. Allen never called it a disease but there's still good info here.
http://emedicine.medscape.com/article/893523-overview ----This one is a bit more intense with big words and throws some percentages out there. But it's not too intense that you don't understand what it's talking about. For the most part :)
1 comment:
Love you!!! <3
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