Thirty-four years ago today, I was born. Nine months after I was born, after not gaining much weight (ounces instead of pounds), and having several doctors tell my parents something was not right with my heart, I was diagnosed with atrioventricular canal (just a fancy way of saying I have 2 holes in my heart!) and pulmonary hypertension. The doctors gave my parents more grim than optimistic news. They told them to basically try to have another baby very soon because they really didn't believe I wouldn't make it to my first birthday. They gave my parents a range: "Oh she could live a year, she could live 50," but I personally feel they didn't have all that much hope. I was diagnosed too late for them to correct my heart, so basically, there was nothing they could do for me but keep watching my heart with years/decades of echoes, and digoxin (which has kept my ticker working!). There was just nothing to do for the pulmonary hypertension when I was a child!
After all the stuff I have learned about PH since I finally started taking meds to treat the symptoms back in 2003, I look back at my childhood, teenage years, and young adulthood, and wonder one thing: how the HELL did I ever make it that far without meds??? I can't even begin to describe the shortness of breath I dealt with for 28 years. I was SOB no matter what I did. I just carried on after I caught my breath, and my heart didn't feel like it was going to burst out of my chest after doing something like making the bed, or sweeping the floor, or carrying a load of laundry up the steps. I honestly thought it was just pretty normal for me to sometimes clench my jaw while waiting for my heart to slow down. The ringing in my ears that was almost deafening sometimes because my heart was beating so fast after just walking to the house from the street was just something I thought I had to learn to deal with. And don't ask me how I worked in a building that I had to go up and down 4 flights of stairs at least twice a day. I have no friggin' clue how I pulled that off. Not to mention, dealing with the little kids and talking to them on the way up (down wasn't the problem, up was!!). I just can't understand how the heck I made it that far without the drugs that are now available to treat PH. I chalk it up to having a family that understood the best they could, parents who have been there for me in so many ways, and definitely the Lord above. There are so many times I've prayed to Him just to give me strength to go on, and apparently He has listened so far!
I have to admit, turning a year older is exciting for me, and yet it is scary at the same time. I understand that all of us, living with an illness or not, have an expiration date stamped on our foot. Of course, none of us know when that date will be, or how we are going to die. But when you live with a chronic illness and a congenital heart condition, and you come across the bleak stats, it's a bit frightening and depressing. When you have people living with your condition dying because of said condition, you just wonder a bit more if the same will happen to you. This summer has really gotten me thinking about my situation a lot more with the loss of Mason at such a young age (only 20), and the loss of many other phriends. It's been an awful summer being a PHer and realizing that even though there are so many treatments out there now than when I was born (nothing back then!), there are people who die from this wretched disease. What makes it even more depressing for me is that I have been coming across different things about Eisenmenger's (the condition I now have as a result of living with PH and congenital heart disease all this time). The stats on people living with Eisengmenger's is not all that impressive. I've seen info where living until the ripe old age of 37 is commendable. I DO know someone who has been living longer with it, and I DO know that there is still some old info out there. BUT, that doesn't mean it doesn't scare the crap out of me. I guess being focused so much on death this summer has made me question my mortality. I'm trying to get over it. There isn't much I can do about it, except just try to keep myself as healthy as possible by doing much of what I've been doing for the last several years. I've been eating mostly better, I've been exercising, which is really good, and I've been trying my best not to get colds (hibernating in winter seems to help that lol). That is about all I can do!
I know, this seems like such a morbid post considering I'm supposed to be celebrating another year of life that God has allowed me to have. I can't express how greatful I am to still be here. I will be with my family and friends this weekend, who I love all so dearly, and who have helped make tremendous impacts on my life. I am so appreciative of the phriends I have made over the past several years as well. I am in awe of what God has brought into my life in the past 34 years, and I look forward to seeing what will continue to be in my life for the rest of my life. No matter how many years that may be.