The heart of the matter (pun intended)

This coming Friday, I am having a test called a cardiac catherization at Barnes-Jewish Hospital in St. Louis. I can't recall how many I've had in the past, but I've been lucky to go over a decade without one. I hate this test! I swore I'd never have to feel the warm, nauseating sensation of that dye running through my veins again! It has been many years that I have felt like a heart patient. This past year, I found out that I am experiencing a condition that many adult survivors of congenital heart defects have, Pulmonary Valve Stenosis: a narrowing and leaking pulmonary valve. I'm not sure why I wasn't forewarned that I could endure this possibility. I'm pretty sure that Dr. Hartmann, my childhood cardiologist, truly believed this wouldn't occur with me. After my last surgery when I was 15, my defects were somewhat repaired. 5 years later, I was taken off all meds and I have done amazingly well. I've always known that I was blessed, but I also thought I was invincible.
I never imagined having a terrible cold this past winter was the beginning of dealing with this. I started grad school, but was barely able to drag myself to class and in class I felt like barfing or fainting many times. I went to my yearly appointment in St. Louis and as soon as Dr. Ludbrook listened to my heart, he detected the new leak over my loud ever-present murmur. I passed it off as an over-reaction or a ploy to have me to run a million tests that I usually talk myself out of. But after an echo-cardiogram, cardiac MRI and a VO2 Max test, the same results. Friday is the finale to see where I stand as far as treatment options. Will I face open-heart surgery again? Pulmonary valve replacement is a possibility in my future. While the surgeon patched up a huge hole in my heart called a Ventricular Septal Defect when I was 15 and grafted a section of my pulmonary artery, ect., it has still (like many patients with CHD) been enlarged and had to work harder. This wears your valves out. Who knew?
I've talked with my close friends about all of this over the past few months. It was devastating news to me. I'd come a long, long way since I was a blue kid. Some ignorant people who find out have said "oh medical science is so advanced, no problem!" or "my grandma had heart surgery, you'll be fine!" Well Eff you!!! That is an insensitive thing to say if you've never experienced heart surgery yourself. It SUCKS!!! Don't say things like that or you can have the surgery for me, 'k?
Something else that sucks is not knowing where I stand. I miss feeling like my old self. Sure, I've always had good days and bad. I always could work out, go to campus lake or a make a trip to the store that wouldn't make me have to go home and sleep for 2 hours afterwards. I didn't battle with 10 pounds of extra weight because I over-eat (from stress and boredom) and don't have the energy to work it off.
Until recently, I didn't want people to know I had a heart condition because it defined me when I was a little girl. I have to own this and like everything else in life, I just have to put it out there! I don't want sympathy, but I do want awareness and understanding about CHD. People have noted that I have changed and that they can tell something is going on with me. I see this as a calling. I want people to appreciate their bodies, health and energy. Regardless of what happens, I am going to get back to the old me.
I have talked to CHD survivors who have went through the same thing and they are doing very well. One guy even told me he plays Hockey! They give me hope and strength on days I feel sorry for myself.
So there it is.
I don't know who holds tomorrow, (as one of my favorite old gospel songs says) but I know who holds my hand. I'll deal with this like I always have. I may not like it, but that is life. I am nowhere near down for the count! I'm just waiting to see what I have to do and if it means a fight, then so be it! My name is Lena: I'm a proud survivor if Congenital Heart Disease!

Please keep me and my family in your thoughts and prayers on Friday.