I
was a little nervous. I had never taken anyone other than my parents to any of
my cardiology appointments. He had come with me to the pacemaker clinic before
but that was totally different.
The appointment was in August and we went fully expecting a good, clean review. I just wanted a little advice. Instead, we were told that it was time for me to have a series of tests that would include an electrocardiogram, a stress test (which I HATED), and a few others. We were warned that the results could be less than perfect.
As far as exercising was concerned, I was told that I was already pushing myself hard enough and not to do anything more than walking or climbing a flight or two of stairs at any time. The doctor also said that my heart was a little enlarged and immediately put me on a blood thinning medication, which, he said, I was probably going to be on for the rest of my life.
All the tests were scheduled to take place over the next few months. After that I would have a follow-up with the doctor so he could tell me all about the results and lay out my future for me. I was scared, shaken, and beyond confused! What was happening? I had just made the appointment to get a little advice.
I went home and researched everything I could about my particular heart condition. I had never done that kind of research before because I always trusted that I was fine, and thought I already knew all there was to know regarding my health. I never thought it was ever going to change much… for the better or worse.
The blood thinning medication made me incredibly sick for a few days, not to mention angry. I couldn’t believe I was going to have to take that shit for the rest of my life. The Dr. kept upping the dosage, saying he didn’t know if it was even going to work because I was one of the first people with my particular condition that they were testing it on. They were hoping it would slow down the rate at which my heart was enlarging and make pumping easier.
After doing my research I had a lot of questions that I had never asked anyone before. I made a list and tried to prepare myself, my boyfriend, my family, and my friends for what the answers could be. Was I going to need a heart transplant some day? A valve transplant? What would my general health be like when I reached my thirties, forties, fifties, and beyond? Would I continue to lead a “normal” life? What was my expected life-span? What were they finding with others who had my condition?
Through all of the appointments, researching, and deep, heavy conversations about my health and my future I got a TON of support from my amazing boyfriend and my parents. Most of my friends were unbelievably supportive too, but there were a few who refused to recognize my reality at all and just repeatedly told me, “You’ll be fine,” then changed the subject.
I had never had a boyfriend while something major was going on with my health so that was a first. I had known early on that this guy was amazing, and probably the one for me, but during this ordeal, he sealed it for me in the most incredible conversation. We were talking about all of my concerns, hopes and fears. The biggest issue for me was that I so desperately wanted to get married and have children (Goals 2 and 3). I was terrified that perhaps I would die too young, and how could I leave someone behind with young children to raise without his wife and their mother? I couldn’t find a balance between feeling extremely selfish for wanting a family and trying to just live my life like everyone else does. After all, no one really knows what tomorrow will bring.
I was crying and asked him if he was prepared to handle that big “What if.” Was he prepared for anything and everything the doctor might tell me? Because no matter what he would say, it was going to be MY reality whether I liked it or not; but he had a choice. He could decide if he wanted to be a part of it all or he could just walk away.
I completely believed that it was too much for anyone in their right mind to willingly take on if they could avoid it. How could I even ask someone to love me and be with me knowing it would be so much easier for them to be with someone who was healthy? I didn’t want to talk to him about it at all because I knew he could just throw in the towel and, in a second, I’d be alone. But I had to give him the opportunity to leave. I had to let him walk away, guilt free, before it got too tough.
“Gina,” he said, “if you die when you’re 40 and I am left with little ones to raise alone, I will not look back and wish I hadn’t gotten involved. I will look back and be so grateful that I had the time with you that I did.” That was it… I melted. I had really expected him to walk away, not because of who he was or was not, but because I expected anyone to walk away. But he didn’t, and from that moment on, I knew that if I got the opportunity to make that man my husband, I would appreciate him every single day of our lives.
In keeping with my luck, the appointment to go over my test results fell on Dec. 24 in the morning. Yep, Christmas Eve! At twenty-five, most women on Christmas Eve are happy. They’re helping their moms cook or thinking about gifts and having another drink. Not me, I was worrying about my entire future, and if I even had one. But that has always been the way. No wonder I am so serious about life, love and everything that’s truly important in the world.
Anyway, we went to the appointment. It was so cheery on the cardiology floor. Usually it is filled with seniors just learning about their heart troubles and was typically quiet and sombre. But this time Christmas carols were playing and several people were wearing Santa hats. Everyone was smiling and greeting each other with friendly holiday wishes. The decorations were everywhere. But I could not have gotten into the Christmas mood if Christ himself, or Santa Claus, had walked into the room. My head was somewhere else.
I can’t even remember how long we sat in the waiting room. It always feels longer than it really is. When we were finally called in, I was so nervous I could barely breathe. The doctor came in and the look he gave us and made me feel all the more apprehensive. He was about to give us news we were not expecting and it showed on his face. I went through my list of questions with him and the answers were numbing.
No, I was probably not going to need a heart transplant, or valve transplant. If I did, it would be many years down the road and wasn’t something I should spend any time worrying about.
When I asked him how long I would live, and how others with my condition were faring, he said, “There is no way to know for sure, and you are young so a lot can change, but as of now, the average lifespan for someone who has had the surgeries you have had is about sixty years.”
SIXTY!!!! I had always thought I would just get my pacemaker replaced as needed and die in my sleep at eighty or ninety. He just took twenty or thirty years off of my life without blinking an eye, and he wasn’t finished.
“People in similar situations as you have had their quality of life diminish significantly at the age you are now. You need to watch your ankles to see if they begin to swell. If that happens after walking, or in the summer, or at the end of the day, it is okay, but if you wake up in the morning and notice your ankles are swollen, it will be a big sign that your heart is not keeping up. At that point, we can say that you would probably have about a year left to live. Your heart is working very hard and we have no way to know how it is going to continue to hold up.”
I was breathless and just wanted him to stop. Stop! Stop! Stop! But he didn’t. He continued, this time trying to say some things that were intended to make it all sound better, but really, how do you make that sound better?
Then he dropped the other shoe. What he said next became the reason I am writing this blog.
“Due to the fact that when a woman gets pregnant, her volume of blood triples, I highly recommend that you do not ever get pregnant. If you do, we will not try to convince you to abort it, but the chances of the pregnancy killing the baby, and you as well are very high! I just wouldn’t take that chance if I were you. I recommend you look into getting your tubes tied, and that you look into surrogacy as an option.”
My boyfriend was frozen. I tried to swallow but it felt like a basketball was in my throat. That was it! My life as I knew it was over.
All I thought was Merry fucking Christmas!
The appointment was in August and we went fully expecting a good, clean review. I just wanted a little advice. Instead, we were told that it was time for me to have a series of tests that would include an electrocardiogram, a stress test (which I HATED), and a few others. We were warned that the results could be less than perfect.
As far as exercising was concerned, I was told that I was already pushing myself hard enough and not to do anything more than walking or climbing a flight or two of stairs at any time. The doctor also said that my heart was a little enlarged and immediately put me on a blood thinning medication, which, he said, I was probably going to be on for the rest of my life.
All the tests were scheduled to take place over the next few months. After that I would have a follow-up with the doctor so he could tell me all about the results and lay out my future for me. I was scared, shaken, and beyond confused! What was happening? I had just made the appointment to get a little advice.
I went home and researched everything I could about my particular heart condition. I had never done that kind of research before because I always trusted that I was fine, and thought I already knew all there was to know regarding my health. I never thought it was ever going to change much… for the better or worse.
The blood thinning medication made me incredibly sick for a few days, not to mention angry. I couldn’t believe I was going to have to take that shit for the rest of my life. The Dr. kept upping the dosage, saying he didn’t know if it was even going to work because I was one of the first people with my particular condition that they were testing it on. They were hoping it would slow down the rate at which my heart was enlarging and make pumping easier.
After doing my research I had a lot of questions that I had never asked anyone before. I made a list and tried to prepare myself, my boyfriend, my family, and my friends for what the answers could be. Was I going to need a heart transplant some day? A valve transplant? What would my general health be like when I reached my thirties, forties, fifties, and beyond? Would I continue to lead a “normal” life? What was my expected life-span? What were they finding with others who had my condition?
Through all of the appointments, researching, and deep, heavy conversations about my health and my future I got a TON of support from my amazing boyfriend and my parents. Most of my friends were unbelievably supportive too, but there were a few who refused to recognize my reality at all and just repeatedly told me, “You’ll be fine,” then changed the subject.
I had never had a boyfriend while something major was going on with my health so that was a first. I had known early on that this guy was amazing, and probably the one for me, but during this ordeal, he sealed it for me in the most incredible conversation. We were talking about all of my concerns, hopes and fears. The biggest issue for me was that I so desperately wanted to get married and have children (Goals 2 and 3). I was terrified that perhaps I would die too young, and how could I leave someone behind with young children to raise without his wife and their mother? I couldn’t find a balance between feeling extremely selfish for wanting a family and trying to just live my life like everyone else does. After all, no one really knows what tomorrow will bring.
I was crying and asked him if he was prepared to handle that big “What if.” Was he prepared for anything and everything the doctor might tell me? Because no matter what he would say, it was going to be MY reality whether I liked it or not; but he had a choice. He could decide if he wanted to be a part of it all or he could just walk away.
I completely believed that it was too much for anyone in their right mind to willingly take on if they could avoid it. How could I even ask someone to love me and be with me knowing it would be so much easier for them to be with someone who was healthy? I didn’t want to talk to him about it at all because I knew he could just throw in the towel and, in a second, I’d be alone. But I had to give him the opportunity to leave. I had to let him walk away, guilt free, before it got too tough.
“Gina,” he said, “if you die when you’re 40 and I am left with little ones to raise alone, I will not look back and wish I hadn’t gotten involved. I will look back and be so grateful that I had the time with you that I did.” That was it… I melted. I had really expected him to walk away, not because of who he was or was not, but because I expected anyone to walk away. But he didn’t, and from that moment on, I knew that if I got the opportunity to make that man my husband, I would appreciate him every single day of our lives.
In keeping with my luck, the appointment to go over my test results fell on Dec. 24 in the morning. Yep, Christmas Eve! At twenty-five, most women on Christmas Eve are happy. They’re helping their moms cook or thinking about gifts and having another drink. Not me, I was worrying about my entire future, and if I even had one. But that has always been the way. No wonder I am so serious about life, love and everything that’s truly important in the world.
Anyway, we went to the appointment. It was so cheery on the cardiology floor. Usually it is filled with seniors just learning about their heart troubles and was typically quiet and sombre. But this time Christmas carols were playing and several people were wearing Santa hats. Everyone was smiling and greeting each other with friendly holiday wishes. The decorations were everywhere. But I could not have gotten into the Christmas mood if Christ himself, or Santa Claus, had walked into the room. My head was somewhere else.
I can’t even remember how long we sat in the waiting room. It always feels longer than it really is. When we were finally called in, I was so nervous I could barely breathe. The doctor came in and the look he gave us and made me feel all the more apprehensive. He was about to give us news we were not expecting and it showed on his face. I went through my list of questions with him and the answers were numbing.
No, I was probably not going to need a heart transplant, or valve transplant. If I did, it would be many years down the road and wasn’t something I should spend any time worrying about.
When I asked him how long I would live, and how others with my condition were faring, he said, “There is no way to know for sure, and you are young so a lot can change, but as of now, the average lifespan for someone who has had the surgeries you have had is about sixty years.”
SIXTY!!!! I had always thought I would just get my pacemaker replaced as needed and die in my sleep at eighty or ninety. He just took twenty or thirty years off of my life without blinking an eye, and he wasn’t finished.
“People in similar situations as you have had their quality of life diminish significantly at the age you are now. You need to watch your ankles to see if they begin to swell. If that happens after walking, or in the summer, or at the end of the day, it is okay, but if you wake up in the morning and notice your ankles are swollen, it will be a big sign that your heart is not keeping up. At that point, we can say that you would probably have about a year left to live. Your heart is working very hard and we have no way to know how it is going to continue to hold up.”
I was breathless and just wanted him to stop. Stop! Stop! Stop! But he didn’t. He continued, this time trying to say some things that were intended to make it all sound better, but really, how do you make that sound better?
Then he dropped the other shoe. What he said next became the reason I am writing this blog.
“Due to the fact that when a woman gets pregnant, her volume of blood triples, I highly recommend that you do not ever get pregnant. If you do, we will not try to convince you to abort it, but the chances of the pregnancy killing the baby, and you as well are very high! I just wouldn’t take that chance if I were you. I recommend you look into getting your tubes tied, and that you look into surrogacy as an option.”
My boyfriend was frozen. I tried to swallow but it felt like a basketball was in my throat. That was it! My life as I knew it was over.
All I thought was Merry fucking Christmas!
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