About Me (In My Own Words)
February 2010 I found out after going to the hospital with shortness of breath and chest pains that I was having congestive heart failure and my mitral valve was severely compromised. I was told I’d need open heart surgery soon to repair the valve. On my way home from the hospital, which by the way was my first overnight hospital stay since being born, I cried hysterically on the way home. My mom and step-father were at my house watching the dog, I saw them and had to break the news to my mom and I cried more. Then when they went home I sat in the bathtub, sobbing uncontrollably, my husband and I went to be both of us crying.
Within a few weeks I was down at the Cleveland Clinic in Weston to have a transesophagial echo cardiogram. They had such a hard time putting in an IV and ended up having an anesthesiologist come in to cork screwed one in my wrist. I cried, I almost passed out too. My blood pressure when down to 80/40. After the procedure the surgeons all met and decided they wouldn’t want to operate on me because they have no idea what is wrong with me, I cried hysterically, I was confused when they told me that I was straight out of the TEE and thought they were telling me I couldn’t be fixed. I was referred to Dr. Scridon and she sent me to a rheumatologist for a work up. For all of the disorders I was positive twice for Lyme’s disease but nobody thinks I truly have lyme’s disease.
I quit my job as soon as I was diagnosed thinking I'd have surgery very soon, and my doctor told me NO STRESS. I spent that spring and most of the summer researching the surgery itself, and painting. I came to terms with my problem and the surgery. I knew by going to Dr. Majalevich at the Cleveland Clinic it would be my best chance. I had a feeling of calm for once in my life. I wasn’t pressured to do anything. Then one hot July 21st, I went to Walgreens and almost passed out. For a week before that I couldn’t sleep, I’d stack the pillows to where I was basically sitting up straight in order to breathe. July 20th as I was sitting on the toilet upstairs, I told my husband “I know how it feels to be dying, it feels just like this.” It was horrible and that day at Walgreens was the last straw, I drove my dizzy self to the ER nearby smoking my last four cigarettes I’d ever smoke on the way. I thought they’d just send me home, after all my surgery date was set for August 11th at the Cleveland Clinic.
They wanted to admit me. My BNP was 1700 my blood pressure 80/40. I would have probably died had I waited until August 11th. I refused being admitted to the hospital around here and we made lots of phone calls and finally my husband was able to get the Cleveland Clinic to send down a jet to pick me up. While waiting for my flight, lying in the ER, my mom and step-father came. I cried, I knew I’d be fine and come back home, alive, but there was that chance so that was tough.
The flight there was uncomfortable and cold, but the medics were both nurse practitioners and my husband was with me so I felt safe. I wasn’t sure what would happen when I got there but I knew I wouldn’t be going home without that repair. When I arrive in my room at the Cleveland Clinic (CC from here on out) I was given a heparin injection in my stomach, I went to sleep crying in pain from that shot. I believe it was the next day when I was told Dr. Gillinov would perform my repair on the following Monday!!! I wasn’t prepared but at least he was the best in the business. I became anxious then, I had them injected me with Xanax every so often and I tried staying in good spirits. My dad was up for my surgery and we sat around listening to standup comedy on my iPod, eating candy.
July 25th was the night before my surgery. I had to wake up at 5 am to wash with a special soap. That evening my husband and my dad left my room around 9 I think, I’m not really sure. I put on my tough face and told them I’d be fine. I got plenty of Xanax shots and felt relieved that the wait was over, nervous as heck but an absurd sense of calm. Like the eye of a hurricane. I felt very internal, I don’t know what that means but I felt a deep sense of myself, I felt like I’ve turned off the rest of the world and the only thing happening was the mechanics of my body, and a quiet calm mind. Then at 5:30 am my husband and my dad came in my room, my eyes welled up. I could tell they had a rough night. I can’t stand to see them sad, my two men, the ones who were supposed to be strong for me. Shortly after they came in the orderlies came to get me. I was brought to the OR and said goodbye to my husband and my dad and I could barely look at them. I didn’t want to be sad. Once I got in I was nervously chatting with nurses, telling jokes, and trying to be brave. They brought me in the operating room, they gave me a sedative and started wiring me up, as I was telling a hot pocket joke they put on the mask and with one deep breath I was out.
While I was out my husband was out panicking in the waiting room. I can’t imagine how he must have felt. My dad was there too. It breaks my heart. Every time I think about them sitting out there I cry.
Around 1 pm, which was way too early for me to be coming to, I was flailing around trying to pull the breathing tubes out. I felt like I was suffocating. I couldn’t see, I felt like a newborn, I couldn’t grab things or open my eyes. They had to restrain me so I wouldn’t pull out my tubes. My husband and my dad came in. They were trying to calm me down. Finally they took the tubes out of my throat but I couldn’t talk. I tried writing on a tissue box “Repair or replacement” that is all I wanted to know. I was so happy when my husband told me it was repaired. Then they disappeared. At the time I didn’t know where they went but Frankie brought my dad to the airport. I tried figuring some things out in the five minutes here and there in which I was conscious. Why was my belly button full of crusty blood? What were the fluids coming out of the tube in my chest? I was confused about many things. Then finally they allowed me to have ice. Oh man the ice was good. I never loved ice so much before. Then I thought my stomach could handle it and I drank ginger ale. I puked. I vomited many times in the next few days. My eyes took a few days to settle too.
Anyways in the ICU I was given a sponge bath for the first time ever. I didn’t like it one bit, it was almost humiliating. But I was covered in iodine and blood and maybe guts too. That whole first day I wouldn’t look at my body, I was so afraid of what I’d see. But the next day I was shown my incision and it wasn’t too bad. They also made me get out of the bed and sit in a chair, but it seemed like all hell was breaking loose in the ICU and I was doing the best so they wanted me out. So they came and took the tube out of my chest. Wow that was a weird feeling that I’ll never forget.
So I get to my new post-op room which was the same as my pre-op room, but in a different area. So I had new nurses. They were so kind and would tell me everything that was going on. They had so much patience and I’ll always appreciate that. The first night in my room they took out my catheter and I had to make it to the bathroom on my own. I remember my chest and arms being a bit immobile but it didn’t hurt too badly. I tolerated it very well. Everything is kind of foggy. I remember walking to the end of the hallway many times to the ice machine. I remember seeing my surgeon for about 30 seconds after my surgery and thanking and crying like he was my savior. I couldn’t eat anything besides the peach cups and even sometimes after that I’d vomit.I remember not being able to stay awake for more than an hour.
The clearest memory is when they were going to release me they had to take out my pacemaker wires. WOW!!!!! That was so painful, I can still feel it sometimes, like a phantom pain. And then they let me go.
Now it was just my husband and I in Cleveland. The day I was released we went to the hotel, I don’t remember much of anything except enjoying taking a shower and then watching TV and sleeping. I slept great. Day two we went to Target and I drove a handicap cart and being uncoordinated kept running into things. We bought some clothes and snacks. I think that day we went to Toledo and I met some of my husband's friends. I felt fine, weird, but fine. Monday we left Cleveland and went to Michigan and it was my birthday. My husband brought me for German food and it was nice. I only had a sore throat but other than that I felt great. The next day we flew home.
My first week home I slept in a recliner and I was feeling sore in the morning but I dealt with it fine. I was hanging out with friends, going to restaurants, going shopping, and I felt fine. Then I started reading about my recovery, I was on the forums asking questions and I read about a-fib. I went to my cardiologist for my first check up and asked her about my chances of getting a-fib. She told me not to worry about them, I probably won’t have them. Then on my way home I started feeling light headed, then at home I felt dizzy and I was sitting on the floor in front of the counter where I was making a sandwich. Off to the ER. This was my second time to the ER the first time was for a plueral effusion which they just sent me home to take motrin. This time everyone rushed around me it seemed serious. I didn’t know what they were doing to me and I was admitted. I was put in the ICU and even though I was back to my normal rhythm they gave me a bolster of amioderone and put me back into a-fib. I was able to stop the a-fib and so they put me on sotalol
My fifth week I had severe pain in my ribs and my shoulder, along with a high fever. I went back to the hospital and they told me I have Dressler’s syndrome.
They had me in the hospital for four days and loaded me up with prednisone. I was on it for about three weeks, I’m just now getting rid of the acne and after getting off of it I had depression, which can happen. Anyways after getting off of it I had a battle. The PVCs came back so strong. I don’t know what happened but they were constantly there pounding and pounding. I took ambien to sleep but it gave me so many night mares I had to get off of it. So I’d wake up In the middle of the night panicking about my PVCs.
At 8 weeks or so I started cardiac rehab. It was great, the only time I didn’t have PVCs was when my heart rate was up. I would drive there with the windows open, singing and enjoying myself until it was suggested I start taking atenolol because I was having atrial flutter episodes that I was not aware of. On the atenolol I became dizzy. I’m still dizzy and I am especially dizzy when I drive so I kind have stopped going to cardiac rehab. On top of it I went to the ER three times last week for what may have been another bout of Dressler’s syndrome. I didn’t get on Prednisone this time.
Unfortunately my blood test for bilirubin came back high, which may either be from the medications, or I have liver damage. That is the one thing I was most worried about in taking all these pills. I’m still waiting to find out what is to be done. I also am waiting on another set of holter monitor results and I started seeing an new doctor. We will see how he works out.
More Info About Me & My Heart
More About Me
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I am from:
Port Saint Lucie, Florida
