Pregnant and in heart failure part one

I've had a few people ask how being pregnant with EA is. This, for me, is a long, complicated, emotional story, so I'm breaking this post into parts. Part one gives a little background and the first part of my pregnancy. This is a dark post. If you bear with me to the end of this series of posts it gets better, I promise!  This isn't typical, even for someone with Ebstein's. It certainly never occurred to me that this is how my pregnancy would play out.

Going back a few years - 12 to be exact - before I got pregnant. I had my first heart surgery. They had to replace my tricuspid valve, and it was decided that a mechanical valve was my best option. I was put onto warfarin. A month after this (a new record, I was told) I got a blood clot. Long story short, they managed to get most of it dissolved and decided that my INR levels should be higher than the recommended for someone with a mechanical heart valve (3.5-4 for the first two years and then they figured I'd be okay at 3-3.5). At some point in the future I may go into this story more, but for now that's the important part.

After my first surgery I was in amazing shape. I actually went to the gym five days a week - and enjoyed it. Then I got into university, met my husband, and life moved on. I had all my yearly check ups, and they were all great. I got a job teaching high school. The first year I taught, I got pneumonia for the first time in my life. I'll admit, I whined. A lot. I took a whole day off work (which was really unusual for me to do). Then life went on. The next year I got pneumonia again. Just the one time.  I knew other teachers who had the same thing happen - teaching is stressful. You work 12 hour days on average, plus you get stuck a small room with germ factories who, even at 15, can't remember to cover their mouths when they sneeze. In high school you get four or five different groups of kids. That's about 120 chances every day to catch something. To be honest, I was amazed I wasn't sicker. The following year (2012) rolls around. Between January and June I got pneumonia not once, but FOUR times. The last time I should have been hospitalized, but my doctor took five days to look at my X-rays, so by the time he realized, I was already over the worst of it.  That August I went and got myself the pneumonia shot. Problem solved, I thought.

At this point, my husband and I had been married for two years and together for 9. We decided we wanted a baby. My cardiologist okayed this, as did my family doctor. We started trying in August 2012, and I tested positive on Sept. 7 - my husbands birthday. 

The happiest my pee ever made me!

That day I went to my doctor to change blood thinners. I had been taking warfarin, but it causes birth defects. He hadn't had any pregnant patients on blood thinners before, but luckily I always ask a million questions and knew that I had to be on heparin. He looked up the dosage, wrote me a prescription, and sent me home. I also had to make an appointment with my cardiologist, which was for Sept. 25.

That September there was a heat wave, and my classroom was in a portable. This means that it averaged about 32 degrees Celsius. This, along with morning sickness, made me feel awful. I actually had students asking me if I was ok (and the occasional one asking if I was hung over - I looked pretty bad I guess). I took to lecturing leaning against a table in the front because I was dizzy and hot and generally feeling awful. 

Then I passed out. Or rather, blacked out after getting out of the shower and walked face first into my bathroom door so hard I knocked myself out (it was not one of my finer moments). I managed to get the bathroom door open and yell to my husband that I was ok. It took a lot of effort. So I was understandably furious when he asked me why I was telling him this. Apparently he hadn't heard anything over the volume of his video game.

My doctor said that some women do pass out when pregnant. It has something to do with a rapid change in blood pressure and/or blood sugar, and not to worry. So I didn't. Until it happened again when I was away for the weekend. Only this time I turned blue. And I stayed pretty blue. When I got back I went to see my doctor again. Again, he told me not to worry. This time I was worried though. I asked him to run tests. I got him to listen to my heart to make sure my valve was still ticking (a sure sign that a mechanical valve is still working). So he listened, sent me for blood work and an ECG, and told me that more than likely I was dehydrated and had low blood pressure. Drink more water and eat food high in salt and I'd be fine.

When I went for the test, the lab tech took a look at my ECG and told me she was flagging my results and if I hadn't heard from my doctor in 45 minutes to call him. When I called I got an incredibly rude receptionist who said that yes, the doctor had seen the results and I was fine. At this point I couldn't do anything without turning blue. The twenty feet from my living room to bathroom was the longest twenty feet ever. And I was exhausted. I was pretty sure I wasn't okay. Luckily the next day I had an appointment with my cardiologist.

After three hours of tests I was told that I had a blood clot on my valve. Clearly this is not good news at the best of times, let alone when you're six weeks pregnant. They admitted me immediately, and started me on IV heparin, hoping to break up the clot. It was the best chance for my baby to survive. 

After four days or so I started to feel better. Everyone was optimistic. They decided to send me for a TEE, where they put an ultrasound camera down my throat to get a good look at my heart. If this went well I could go home. 

It didn't go well. The test revealed that I had either a large clot or tissue growth over my valve. I had two options: clot busting drugs or open heart surgery. And I needed to decide ASAP. My valve was stuck closed. This is far more dangerous than if it was stuck open. My cardiologist came in to discuss options with me. Either way, she explained, I would likely lose the baby. The clot busters may or may not work. If they didn't work and I had to have the surgery, there was no doubt I'd lose the baby. If I lost the baby because of the clot busters, they would have to wait up to six weeks to operate. I likely wouldn't last six weeks. She called her mentor in Toronto, who called his or her colleges around the world. There was only one case that was even remotely similar. No one knew what to advise me to do. So it was up to me.

Let's take a step back for a moment. This is pretty bleak. People were telling me that I needed to make a decision now. Everyone is focused on me, and trying to keep me alive. My baby was already considered a loss. My baby, who I knew was a girl, who I knew I was going to call Elliott, was being written off. This was not okay. Everyone, including my family, kept saying I could have another, that it was so early in it didn't really matter. Looking back, my family was concerned I was going to give up. But at the time, I felt betrayed. I could have another, but I wanted this one. It was not their intention, but I have never felt more alone than I did in those few days.

In the end, after weighing all my options, I decided to have surgery. It was scary, but I felt it gave my baby the best chance. They fit me in as quickly as they could. I decided on Wednesday morning, and they scheduled my surgery for Thursday morning. Wednesday night the hospital ended up performing a heart transplant so I was bumped. They didn't know when they could get me in. Eventually they decided they would bring a team in and operate on Saturday October 6 - thanksgiving weekend. My surgeon told me in our pre op meeting that he had never had a pregnant woman keep her baby after this surgery - ever. 

After my surgery I was taken into the CICU (cardiac intensive care unit). I was still unconscious when they sent in someone from maternity to check on the baby. My husband, mother and sister were all there, gathered around a tiny, portable ultrasound machine. No one had any hope they would see a heart beat. Yet there was one, going strong. I heard about it later from the nurses - not telling me, but talking amongst each other. Everyone was shocked. My family was thrilled, especially when I woke up, because she was the first thing I asked about. My baby had survived so far.