About Me (In My Own Words)
05/23/18
Hi, My name is Nikki. I'm 47 years old. I've been married for 27 years and I have 3 daughters, ages 21, 19, and a 7 that thinks she's 16. I've been a stay at home Mom since the 7 year old was born. Luckily, I don't have to worry about rushing back to work after surgery.
I found out that I had a heart murmur when I was in my 20's. The Doctor that found it said it was very faint and not really anything to worry about but that I should have it checked from time to time. Through the years, every time I would see a new Doctor, he would ask "Did you know you have a murmur"? Then he would go on to tell me the same thing, it's mild, nothing to worry about, etc. Then they started calling it a Mitral Valve Prolapse but continued to say that it was mild and to just have it checked from time to time. Well, I never thought anything more about it. I was young, felt great and never dreamed that I would ever have heart problems. Until, years later, early 40's, when low and behold, I started having heart problems. And when it started it made up for lost time.
It was February 2013 and we had just made the move from one two story home to another. All the packing, unpacking and, well, anyone that's ever moved knows the stress that brings. Plus a baby, 2 at the time, that doesn't like the new home. The teenagers were mad because they had to change schools, so of course their lives were ruined, which was my fault. Well, after 3 months in the new home, I started having chest pains while carrying my 2 year old up and down the stairs. I chalked it up to stress. Then, the shortness of breath came, while doing the same thing. My thought was, "man, I must really be out of shape"! Then, over a short period of time, maybe a couple of months, several things started happening. The shortness of breath, chest pains, feeling of butterflies in my ribs, etc... All these strange things that I had never experienced before. Yet still, the heart thing never occurred to me. Until, one day I was talking to a friend about my weird stress symptoms and she convinced me to go to my Doctor.
A week later, it was in June I think, I'm sitting in my Doctor's office explaining my symptoms. He listens to my chest and, as usual, he says you have a murmur but it's faint, it's probably stress. I almost agreed and walked out but that little voice inside stopped me, saved me. So I asked for an EKG. It came back abnormal. He looked at me and said it's probably nothing but just in case I'm sending you to a Cardiologist.
I went to see the Cardiologist that my Doctor referred me to, which was a local Doctor. He hooked me up to a monitor, that I wore for a week. When the results came back he tried telling me that I needed surgery immediately on my Pulmonary Valve. That just didn't sound right to me because none of the other Doctors ever made reference to my Pulmonary Valve, it was always the Mitral. So I started asking questions, how, why, all that stuff. His response knocked me off my chair. He asked me if I did a lot of illegal drugs because this kind of heart problem was seen mostly in "those kind of people" (his words). I wanted to slap him. Instead, I explained to him how I didn't even smoke cigarettes let alone do drugs. The disbelief look on his face made me realize that I was in the wrong place and that I needed to find a different Cardiologist. Thankfully, a friend of mine just happened to know of one at Cedars Sinai Heart Institute.
My first appointment with the new Cardiologist was in September. I explained everything that was going on, by this time my symptoms had gotten worse and new things had started. So the Doctor lined me up for all the tests, echo, angiogram, you name it. In the meantime, he put this monitor on me. My first thought was, great this again! Anyone that's had to wear one knows. But I figured it had to be done. So I did the time.
October, All tests done. All results in. Doctor tells me that I have Mitral Valve Regurgitation but it's mild to moderate and Tricuspid Valve Regurgitation but that's mild. He goes on to tell me that the test results are not explaining my degree of symptoms. I took that as him not believing me. I was devastated. I didn't know what I was going to do. I insisted that he talk to the surgeon. Well, the surgeon wouldn't even see me based on my test results. I went home with the Doctor saying if you get worse, come back.
November, Doctor calls and says for some reason back when all the tests were scheduled someone failed to schedule me for the cardio stress test. He wanted me to have it done as soon as I could. It was 2 weeks before Thanksgiving when I had the test. I went in, got on the bike, they hooked me up to everything and we started. All I can say is, I'm glad my husband was there because halfway through the test, my heart rate shot up, I passed out, and fell off the bike. My husband caught me before I hit the floor. When I came too, I was surrounded by Doctors and Nurses, all in shock. My first question was, Do you believe me now? At that time the echo showed that my condition was moderate. From then on I went downhill fast. My Doctor consulted with the Surgeon again and he finally agreed to see me. By the time I got in to see him, in the beginning of January 2014, my condition had gone to moderate to severe. He had me come back for a recheck 2 weeks later and I was severe. He called me and said we are scheduling surgery for the beginning of the week.
The third week of January 2014, I wound up having Open Heart Surgery to have my Mitral Valve Replaced with a mechanical valve,
( mechanical because they are supposed to last much longer than the tissue valves ) and a ring placed around my Tricuspid Valve to repair that. It was determined during surgery that my condition was caused by Rheumatic Fever that I had as a child, which naturally I don't recall having nor does my mother remember me having it.
I went home 14 days after surgery due to a few complications. Recovery was quick, about 6 weeks. It had to be, I had a 3 year old that insisted. I was back on my feet and climbing those stairs. But unfortunately, it was short lived. My problems started all over again. First it started slowly, to where I didn't notice and I definitely didn't suspect my heart because I chose the mechanical valve that's supposed to lasts almost a lifetime... wrong.
In November 2016, I decided to give up the stairs so we moved again.
Fast forward another year, October 2017, and I'm back at my Cardiologist with the same old complaints. We go through the same routine, tests but results don't match my degree of symptoms. However, the echo does show something new. The Mechanical Mitral Valve has shifted into the Aortic Valve and it's causing a mild obstruction. But it's mild not bad enough for the Surgeon to consider looking at it.
We got through the holidays then by January 2018, I was sleeping on 4 pillows because I couldn't breathe, I couldn't walk across my house without getting out of breath and I couldn't do anything because of the extreme fatigue. My blood pressure was dropping, my legs, feet and abdomen were swelling, I had no appetite. And still, the Surgeon didn't want to do anything. Finally, in February 2018, my Doctor admitted me into Cedars Sinai for Heart Failure. I was in there for 10 days while they did every test in the book. I think I saw every Cardiologist and several Surgeons during my stay. They were baffled. Every test showed something different. And of course, the test results never justified my symptoms.
They knew what was wrong they just didn't know how to fix it so it wouldn't happen again. And because it was multiple valves, the risk was much higher and they weren't sure they wanted to take it. But I guess I cried and complained enough. And they figured out a plan as to how to fix me. My surgery was scheduled for 2 weeks from that time. So I was sent home to wait.
You can read the rest in My Journal.
More Info About Me & My Heart
More About Me
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I am from:
Apple Valley, California
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My surgery date is:
March 8, 2018
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I was diagnosed with:
Aortic Regurgitation
Aortic Stenosis
Mitral Stenosis
Tricuspid Regurgitation
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My surgery was:
Aortic Valve Replacement
Mitral Valve Replacement
Tricuspid Valve Repair
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