I was a sickly child from day one - born 6 weeks premature. I had my tonsils out at 2 because I could not eat. They thought I had polio at some point. All the typical childhood diseases turned into major illnesses. I had my first migraine at 7 and was hospitalized because they thought it was epilepsy.
When I was around 11, I had a rash and high fever that was thought to be measles. It was followed by excruciating pain in the back of my knees - diagnosed as "growing pains". Later, after my heart problems started, I was told this was probably rheumatic fever.
When I was 19 I got braces. Not knowing there was a RF history, there were no antibiotics. About a year after the braces, I was at a new GP and he told me I had a mild heart murmur that I was probably born with. Never had heard this from anyone previously but I didn't question it. A couple years later, I was at my yearly gyno appointment and was asked about my heart problems. Say what???? I told him about the heart murmur and he said it was much worse and I needed to see a cardio.
All of a sudden I was diagnosed with mitral valve prolapse and stenosis and told I would be facing valve surgery in the future. I was put on daily penicillin, which I took for years until after my first OHS.
Over the next few years, my health got progressively worse. I could not do housework - running the vacuum ruined me for days. I had to use a pillow to prop myself up to breathe both sitting and sleeping. I had a cath in 1978 and was told things were close to surgery. In early 1980, I had a spell of breathing problems that put me in the ER. My cardio never called the ER or called me. A nurse at the ER gave me the business card of a doctor who just started practicing cardiology and that action is probably why I am still around. A few months later, I passed out when alone and was found a few hours later and taken to the ER. My new cardio said it was time to see a surgeon. I was off to New York to see "THE" valve surgeon in the area, was told he could repair my valve and we scheduled surgery. Once in, my mitral valve disintegrated and had to be replaced. My surgeon chose the Bjork-Shiley CC valve (the one that was recalled about a year later). He told me he was amazed that I walked into the hospital for surgery based on how bad the valve was. Angel on my shoulder.
Recovery was pretty normal except I started running a fever a couple days post surgery so I was in the hospital for 2 weeks. All I knew was I didn't want to ever do this OHS thing again.
About a year later, I started having odd symptoms. It would often feel like my heart would stop and I had to cough or even hit my chest and things would go back to normal. I went to see my doctor a few times but nothing ever showed up. I was pretty much labeled as a post-surgery basket case/worry wart and that was that. My cardio's partner even told me to wear earplugs to bed (a lot of my symptoms were when I was trying to sleep or they would wake me up) so I wouldn't hear the unusual heart sounds. I told him that was stupid because it was as much a feeling as sound related. A few more months went by, I went back to college and tried to carry on as normally as possible. A little less than two years from my first surgery, I had a really bad bout of irregular heartbeats and the "heart stopping" symptoms and went in to see my cardio without an appointment. He did an echo and got very quiet. He said the echo seemed to show an irregularity that was consistent with a clot on the valve. He sent me back to New York to see the cardio associated with the surgeon I had for my first surgery. He looked at the echo and wanted to immediately admit me to the hospital and do surgery that Monday (this was on a Friday). Well, I refused to be admitted because I had out of town guests coming in that day and, in fact, we were headed to the airport from the doctor visit. The cardio tried to change my mind but I just said that if it were a clot, I had been walking around with it for two years and I didn't think it would pick that weekend to break off. It really pissed me off that I was ignored for two years and now it was an emergency.
In any case, I had my weekend with my friends and checked into the hospital (Long Island Jewish Hospital). I went through many echo's (of course they had to have their own and not just my cardio's even though his echo was enough to get me admitted) and a cardiac cath. Many of the echoes showed no problems and I could see that things were on the verge of me being told to go home. I finally had enough symptoms when the cardio was around to get it on an echo and they scheduled the cath. During that cath, I had my first experience with a-fib and they felt it was a reaction to the iodine dye.
They, too, thought it was a clot and wanted to do surgery the next day. However, my surgeon was out of town and not due to return for 3 days. I decided to wait until he returned but I stayed in the hospital.
During my surgery, I must have had another angel on my shoulder because there was so much scar tissue the path to my heart was not easy. The surgeon lacerated my pulmonary artery and things apparently got a little hairy but they got the bleeding stopped and continued on. What they found to be causing my symptoms was pannis growth that had encroached on the leaflet of the valve causing it to stick. The growth tissue was removed and my second OHS was over.
Not too long after, we did a lot of research on what might have caused the pannis. I ended up seeing a rheumatologist who sent me to a doctor doing studies on anti-heart antibodies. I tested positive for the antibodies and was put on a year-long regimen of prednisone. Tests after that showed no more antibodies and I was very hopeful of avoiding any more heart surgeries.
Everything seemed to be good for another 10 years or so. I moved back to Ohio, got divorced, became a life partner to a wonderful man, Chris, and tried to just live. However, in 1993, I started having issues with TIAs. We weren't really sure if they were caused by tiny clots or pannis growth breaking off. I was put on aspirin and we did a lot of watching. In 1994, I had had enough of the symptoms and worrying so I went to see a local surgeon who's name came up every time I asked anyone in the medical world. Armed with my records and tales of my symptoms, Chris and I went to see him for an initial visit. The surgeon agreed that "exploratory OHS" was needed. He was somewhat reluctant to take me on since I was a difficult case but, at the same time, was intrigued and wanted to keep me alive. I am grateful every day for him.
The first visit we had with the surgeon, we talked with him for about 10 minutes when he left the office briefly. When he returned, he told us he had cancelled a meeting so he could spend as much time with us as needed. Our visit with him stretched to about 2 hours as we discussed how things had gotten to that point, his and our concerns, valve choices (he said he would use any valve I wanted but went over the options) and what the dangers were and my chances. He was mostly concerned about the problems during my prior surgery with the artery laceration since it indicated a lot of scar tissue to go through.
I cannot recall if we scheduled surgery that day but we definitely scheduled surgery with him to take place on April 19th, 1994, 4 days before my 42nd birthday. I chose the St. Jude valve. I was so used to coumadin by then and was hoping to never need another replacement - "three's the charm".
I should probably have Chris write the surgery and recovery part of my third OHS. I remember bits and pieces. The surgery itself was about 5 hours. I remember recovery and the breathing tube as being very difficult. I was awake with the tube for a couple of hours and I was too tired and doped up to breathe on my own. I remember crying a lot because I was working so hard to breathe on my own to get the tube out and it wasn't working. The toughest part for me with the tube is when they suction it out - it is such a trapped feeling of choking; I just find it pure torture. Of course, the tube came out eventually and I left recovery a few hours later.
I was a very sick puppy for the first week. I was not producing urine so I had all the issues that went along with that. I was too weak to even talk or complain which is quite unlike me. Chris finally put his foot down and insisted on seeing the surgeon who got really upset that things were not handled faster by the staff. Once the urine output started, my recovery was immensely faster. I also remember the hospital was working on the roof outside my room spreading tar which is something that has always made me ill. It became so bad, my surgeon took care of making them stop until I was released.
It was a good 8 weeks before I even felt like doing much of anything. I did my walking as much as I could and tried to do some work remotely but it was really, really slow going.
I am not entirely sure I would do this a fourth time; I hope it is never a decision that comes my way again. I am forever grateful to all the medical teams I have met over the years - they are a big reason why I am still here to share my story.