Back in December we were getting ready for Christmas. I was working a bunch and wasn't feeling great. I remember having the weekend before Christmas and feeling alright. Monday, we went to get our babies pictures taken and I was so out of breath. That night, I couldn't sleep and had to sleep upright, which is something I haven't had to do since I was a teenager and was very sick. The next morning, my boss was supposed to come up to work for a business review and I called him to tell him that I was sick and needed to go to the hospital and that he probably shouldn't come down that day. I did some research online and thought I either had bronchitus with problems with my blood pressure medicine or heart failure.
I went to the doctor's office and waited patiently. On the way up, I had to stop to rest, I was so worn out. He checked me and immediately started to panic, thinking that I was having another pulmonary embolism. I was rushed to the ER. They at least got me in sooner than it would have been if I had went to the ER on my own! :)
They did a PE study, to see if that was the problem. It wasn't, and I was in late stages of heart failure. They wanted to do an emergency pacemaker and put me on the heart transplant list. Since the pacemaker is so expensive and they can not do many tests afterwards, they require that you either do it the emergency way and be put on the transplant list or you wait 3 months while trying medicine. It would be a long 3-4 weeks of trying to figure out which that would be and it changed almost daily.
I was sent home late Christmas night. My left side of the heart started at about 10% function and had raised some and most of the fluid was out of my lungs (they were both filled, again, when I had came into the hospital). Sunday, I rested most of the day and Monday I tried to work. Suddenly, I stopped talking! Back to the ER I went, as I had several TIAs, which are mini strokes. The difference being that they didn't cause permanent damage. They could see them on the MRIs that I had, so they were significant, but luckily I only stutter occasionally.
My heart was skipping beats and they couldn't figure out why. I was soon transferred to Barnes Jewish hospital and I couldn't have been in better hands. I had multiple teams of doctors working on me. It was like a real life episode of House. I had a team for factor five leiden, electrophysiologist (electricity of your heart), cardiac, endochrin, and sleep medicine.
After a crazy amount of tests, we found out several things: I have a birth defect in my heart. My heart never compacted into a solid muscle and is shaped like a sponge. Blood clots form here and it doesn't pump as well as a normal heart would. I have mild sleep apnea, which caused my heart to skip beats. So many things. I almost had to have a right and left heart cath done but they decided against it when I had my cardiac MRI.
Some of these tests were insane. I always get the weird 1/1 million side effects. When they were doing a bubble test on my heart, I had terrible contractions like I was going into labor! Not fun! I just missed the babies so much and had to look at their pictures daily to try to keep sane. I was on a floor where children aren't allowed but they made a special exception for me. Unfortunately, since I was out of town, they couldn't come see me anyhow. It is just not practical to have the kids driving all day. They'd be grumpers when they did get there.
My heart function had increased to 37%. They were extremely pleased with that and the medicine was working. The right side of my heart was beating so fast to compensate beforehand that I would almost pass out when I tried to stand. It went from about 140 beats a minute sitting down to 70. Much better! Also, fluid was staying off of my heart and lungs and, as Martha Stewart says, that is a good thing.
One funny sidenote: When I was in the hospital, multiple times and at both hospitals, they constantly asked me if I was in the medical field or if I was a pysician. In a recent ER visit, they asked again and then told me I was the most knowledgeable patient they had ever had. I thought this was awesome. Not trying to sound arrogant, but it was hilarious.
I remember one day a fellow had come in to go over my brain MRI. They redid it because I was stuttering and getting frustrated when I couldn't get out some of my words. I tell you what, the ability to talk is something we take for granted. The frustration over not being able to speak correctly or at all was unbelievable. There really is a powerless feeling to it. Anyways, the fellow came in and said, "I really don't know how to read your MRI but the results are back. Your doctor will be in later on. I can tell you one thing...you don't have any massive tumors!" and I was happy, because when you have so many things going on, you have to be grateful for the little things. I was happy knowing that my kids were safe and sound and that we'd celebrate Christmas when they came home. I couldn't wait to be home with my husband and kids. I'm happy that, when a nurse came in at midnight and told me that I was going to be taken down for a colonoscopy at 3:00 am (WHAT?!), that she was *wrong*. She was so, so, oh so wrong. Things could be worse and it's hard to realize that when you're in times of desperation and you are fighting for your life and you've got to appreciate what you have and have done and work hard so that you can appreciate the future.
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