Hi You certainly do have some challenges. I pray that your surgery will go off without a hitch and that once through that you will feel much better. It is very draining when you are not getting enough oxygen in your body. Post when you can and let us know how things are going. Best wishes.
At the end of the day, be able to look back and say "I did my best today."
*************************** Stephanie in Nova Scotia
My heart story began in 1997. I was in 8 years old, in 3rd grade. I had had several different strep throat infections in the last several months, and my mom brought me to the doctor because I was feeling sick again. We got a little more than we bargained for at this appointment, because the doctor discovered a heart murmur that had not been noticed before. Because it was new, they suspected bacterial endocarditis, and I was hospitalized for a week. After that week was over, and I had had many, many tests, the only conclusion that was reached was that I had a bileaflet mitral valve prolapse with mild regurgitation and a vegetative growth on the anterior leaflet.
After I left the hospital I had checkups with a cardiologist once every 6 months to have an echo and an EKG. My activity was also limited in that I was not allowed to put more than half of my body weight on my upper body. I was told early on that I would probably need to have a valve replacement by the time I was 20, but as the years went by it never seemed to reach more than mild-moderate regurgitation and some moderate enlargement of my heart, which was treated with atenelol. Based on this, by the time I was 18 they guessed that I might not need surgery until sometime in my 50's, and my physical restrictions were somewhat relaxed.
A year or so later, I started to notice that I was really out of shape. Going up one flight of stairs left me a bit out of breath, and if I did any major exercise I got a headache. I was worried about this, so I spoke with my cardiologist and we did a stress test. At that time they concluded that I was a bit out of shape, but that my heart would be fine if I started an exercise program. Over the next couple years I worked out moderately off and on. I never felt like I was in really great shape, but I didn't feel too bad.
Then, a little over a year ago I started to feel more and more drained. My husband (then just boyfriend) loves to hike, and I've always loved the outdoors, but every time we would go on a hike I would feel awful. I'd run out of breath, my heart rate would shoot up, and my head would start pounding. We tried to take it slow, and for a while just kept trying to do things more often on the theory that eventually I'd get in better shape. I hadn't seen a cardiologist in almost 3 years because I hadn't had insurance, and so I pretty much gave up for a little while, and just decided that I was going to feel icky forever, and that I was just going to do the stuff I wanted to anyway. Around the same time I was also dealing with significant anxiety and depression and joint pain. The joint pain had bothered me since I was in middle school, but the doctors had never found an adequate explanation.
Seven months ago I finally got insurance again, so I went to a primary care doctor and started treating my depression. The doctor also started a series of blood tests to try and diagnose my joint pain and lack of energy. He referred me to a cardiologist to have my usual follow up that I'd missed for 3 years. When I finally had my echo, and met with that cardiologist, I was very disappointed at first. I wasn't expecting anything to be worse, but my regurgitation was now moderate, and my left atrium was severely enlarged, and he didn't seem to think that was concerning at all. Also he stated he didn't see any vegetative growth, and that concerned me, because that had always been part of my diagnosis. I had also mentioned to him that I was having semi frequent tachycardia and that my feet had been turning purple more than they used to, regardless of temperature, and he didn't really address those concerns at all. He just scheduled me for another echo in 6 months and that was that.
So it was back to my primary care doctor. My test results had come back, and the only abnormality was a high strep titer, even though I hadn't had a strep infection in several months. They put me on antibiotics for 3 weeks, then had me wait 3 weeks before testing again. When they tested again they found my strep titer was still high. At this point I was actually really confused, because I noticed that while I was on the antibiotics I didn't notice any joint pain, which seems a really odd correlation to me. So we repeated the process, same results. At this point I was worried that I have some sort of recurrent rheumatic fever, and my doctor was concerned that maybe there was a lingering strep infection on my heart valve. He consulted with my cardiologist, who decided I should come in for another appointment.
This time I finally felt like he was paying attention to me. He still didn't seem to be concerned that my toenails were pretty much permanently purple at this point, which bothered me, but he asked a lot of questions about my energy and heart rate and joint pain and other things. He asked if we had tested for lupus (we had) and then did some blood tests of his own and put me on a holter for 24 hours. When I came in for my next appt, he scheduled me for a stress test, because I was still so out of energy. (I never got the results of the holter). The stress test was where I think he finally started to take me seriously, because the results showed that my heart condition is definitely affecting my physical capacity.
I went back after the stress test and we decided that I'm looking at surgery sooner than I thought, but that the time frame would depend on whether the valve could be repaired or if it needs to be replaced. So they scheduled a TEE, and said that after that we will need to talk to a surgeon to decide what to do next. At that point I wasn't really anxious yet, I kind of wanted to the surgery so that I would feel better, and that's really as far a my thought process was going. We put that test off for a few months to give me time for my wedding and honeymoon, but that finally took place 2 weeks ago.
I can't remember what the doctor said, because he sedated me, but he told my husband that the regurgitation is now severe, and that my surgery really needs to take place in the next couple months. So now it doesn't matter if I can have a repair, or if it will need to be a replacement, something needs to be done soon. My feet are ice cold and dark red and dusty purple 90% of the time. The bottom half of my fingernails are faintly blue constantly, and I can hardly walk across our tiny apartment without getting dizzy and losing breath, My surgery is scheduled for a month from tomorrow, and I'm finally anxious about it. Im not worried that I won't make it through the surgery, I'm worried that I'll go through it, and I still won't feel better. I'm worried that this might affect my ability to have kids. I'm worried that my poor husband of 2.5 months is so worried about me, and I'm worried about not working for 2 months, and I'm worried because I'll need another surgery in 10-20 years.
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