About Me (In My Own Words)
My actual journey began years ago when the doctor found a large mass in my lungs on a routine X-ray when I was 5 months pregnant. It was 1982 and only one week after the birth of our miracle baby that I was diagnosed with Hodgkin’s Lymphoma. I was given radiation therapy. Although they tried to protect me, I have struggled for years trying to overcome all of the things that this life-giving procedure blessed me with. Don’t get me wrong. I’d do it again. I’ve loved every minute of raising my son and being with my family and friends.
I first started having heart trouble in the early 90s. After a battery of test, I was diagnosed with cardiomyopathy, and was told that I had the heart of an 80 year old man. A few years later, they noticed that my aortic valve had started leaking more. They began to monitor it more closely and started scheduling echocardiograms every 6 months. I had pulmonary hypertension and also fibrosis in my left lung, so it has been very hard to tell whether my breathlessness was caused from my lungs or my heart. Fast forward to 2019 and a couple of days before Thanksgiving, I went in for an early echocardiogram because my cardiologist had retired and they wanted to get me set up with a new one. I remember the technician telling me things that I had never been told before and I thought how neat it was that I was learning new things about how my heart functioned. Little did I know, there was trouble brewing. That night I got a call from my new cardiologist who I wasn’t supposed to meet until February and he was actually on vacation several states away. He told me that I had too much fluid around my heart and that I needed to go to the hospital for an emergency pericardial window. He gave me his personal mobile number and told me I could call if I needed anything at all. That surgery took the wind out of my sails! I came out not being able to get up and walk anywhere, and I struggled trying to do cardiac rehab. ...and then covid hit and our world came to a standstill. By then my aortic valve had became severe. It was not only leaking, but I also had severe regurgitation. In October, they decided that I had no choice but to have open heart surgery. I was given 3 years if I didn’t follow through. I failed all of the test that would have let me have a TAVR.
On November 20, I had open heart surgery. I remember waking up and being thankful that I was alive. I remember the tube they had told me about that was actually the only thing that I dreaded before going under. And then....the sweetest nurse ever came into my room, sat down beside my bed, took my hand and said she had something she needed to tell me before my son got there for my first visit. Her words broke my heart. My surgery was unsuccessful. I cried. She got up, came around the bed and laid across my body giving me the biggest hug ever. With that hug came hope. I’ll never forget the peace that filled my soul!
During surgery and after they had opened me up, the doctor found layers of scar tissue that he couldn’t get through. He removed as much as he could, but my heart was enlarged, twisted and tucked too deep inside my chest to even get out. He closed me up and put me at the top of the list to come up with a plan to fix me. My surgery was my doctor’s first unsuccessful heart surgery in over 27 years. My heart even broke for him! I could see the disappoint on his face. I remember him telling me that I was right... that I was too damaged.
After 4 days in ICU, I was sent home. During that time, I began more testing as a team of doctors scrambled to find a solution. I was retested for a TAVR ....this time with different numbers to meet than the first time. On December 22, I went in for the TAVR procedure. It was a success!
I am once again going to cardiac rehab. I’m not exactly fixed, but I have hope. I still have cardiomyopathy, congestive heart failure and my heart is really weak. I thank God every day for the grace that He has shown to me...something that some don’t understand, but I truly am thankful! It’s in Him that I put my hope. I am also truly thankful for the doctors, the nurses, the scientists and everyone that has had a hand in giving me what my RN called a second chance at life.
I’m not sure what all lies ahead for me. I have received my covid 19 vaccination. I’m still not allowed to go out in public. I am possibly going to get a defibrillator in May.
In the meantime, I’m trying and hoping with all my might to get back to doing the things that I love. I’m a cake decorator and I am getting anxious to sling some buttercream!
More Info About Me & My Heart
More About Me
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I am from:
Missouri
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My surgery date is:
November 20, 2020
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I was diagnosed with:
Aortic Regurgitation
Aortic Stenosis
Atrial Fibrillation
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My surgery was:
Aortic Valve Replacement
Transcatheter Aortic Valve Replacement
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My surgeon is:
Dr. John Steinberg
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My hospital is:
Cox Medical Center South
