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My heart valve story. The road to diagnosis, treatment, surgery and recovery....
I am a 45 year old wife and mother of four daughters. Emma 19, Maddie 16, Ava 15 and Kensie 4. We have always led an extremely over scheduled, around the clock, kind of a lifestyle up until a few years ago when I started having trouble keeping up. What symptoms I had seemed to quickly manifest into physical symptoms that were hard to ignore. I was dizzy and disoriented with pretty much any physical activity. I was having some difficult to tolerate fluctuating levels with my heart rate at all times of the day, and even some visual disturbances. I was tired and incredibly winded pretty much all of the time.
In February, 2019, I made an appointment with a cardiologist, who ran some tests and fitted me with a heart monitor, that I would wear 24 hours a day, while it recorded and decoded exactly what was going on with my heart. At this appointment I had an echocardiogram that told me I have a congenital heart defect called a bi-cuspid aortic valve and that valve was leaking. Most people have a tri-leaflet valve, but my valve had only two leaflets. Even worse, is that the two I did have were not working properly. One side of the valve was sticking and causing blood to leak behind and fill my aortic root instead of pump blood to the rest of the body. This quickly led to more testing and diagnostics, which led to the diagnosis of moderate aortic insufficiency, caused by regurgitation, as well as, an ascending aortic root aneurysm, which was to be monitored, but not large enough to cause problems as of yet. I was put on a beta blocker and cholesterol medication, to control the symptoms, that had initially let me know that I had a problem. Those symptoms not to ignore: irregular and erratic heartbeat. For example, my rate heart would go anywhere from 54 to 168 in one beat.
I had what had become an overwhelming amount of dizzy/disconnected spells, which most of the time came with some visual effects (floaters, black spots, blurry). I developed a complete heat intolerance and severe legs cramps from a drop in potassium levels. Ultimately, I had four separate vision disturbances where I lost vision in one eye (like a black curtain came over my eye). Each time, episodes lasted no more than 10 minutes and are believed to be a classic TIA (mini-strokes). And, I have severe edema in my legs and ankles in additions to putting on weight as the disease progresses and my medicines fluctuate.
I decided on Dr. Jennifer Lawton from Johns Hopkins Medicine as my surgeon. We also agreed she would be in charge of my cardiac health until surgery. She would order the best available testing and diagnostics and keep me informed and all went smoothly until all of the sudden it didn't. I have been monitored by in person visits, regular bloodwork, 3 separate, 4D image, CT with IV-contrast imaging, 4 echocardiograms, and a trans-esophageal echo over the last two years to measure and monitor the progression of my diseased aorta, heart efficiency and the growth of my aneurysm. My symptoms have mantained stable and are controlled bymedication and adjustments made to my lifestyle.
At my appointment in October, 2020, the latest tests revealed things have deteriorated and the aneurysm has grown and that surgery was needed in the next 3-6 months. The aneurysm has grown to 4.9 cm which is an indication of time to intervene in bi-cuspid aortic valve patients. In addition to the aneurysm, the leak has worsened and is at 85% and considered severe aortic regurgtion at this point. I will have a mechanical valve implanted to replace my malformed, leaking aortic valve. I will have both my aortic root and aortic valve replaced in May at Johns Hopkins during an open heart surgery. I am not a candidate for a less invasive options. The surgery should last 7 hours, during which time I will be on a heart lung machine. I am getting the mechanical On-X valve which my doctor thinks gives me the best chance of not having to have a recurrent surgery later in life. I will recover for 48 hours on a breathing tube in ICU and then gradually moved into normal recovery in a regular room for 8 -10 days. I will be followed home after that with a home health nurse to help Scott with my recovery over the following 4-6 weeks. The most dangerous time for me will be the first 30 days after surgery. As long as I stay healthy and infection free durning those 30 days my chances of completely resuming a normal life after my incision and sternum healed are great. I am terrified of the surgery, and pretty much every single thing that goes with it, but looking forward to resuming a normal life, where I am not so limited in my daily activities because of progressing heart failure. I am trying hard to keep my anxiety about this in check, but I am just not handling normal pressures and anxieties as well as I did when I was healthy. I am currently trying to make my heart come to terms with what my head already knows. I know the surgery is necessary and I’m thankful, that living in Maryland, I have access to one of the best hospitals in the country. The doctor is gong to try to help me keep my anxiety under control so I can make all of the preperations that need to be made before I go in for such a serious surgery. If you or anyone you know has any experience with my condition, please tell them don't hesitate to reach out! And, as me and my family try to come to the dramatic life threatening position I am in, we would appreciate you keep us in your prayers and that this strong willed side of myself that I have spent a lifetime getting in trouble for, might just be the strength I need to pull through what will certainly be the most challenging experience of my life. Thank you all for being a part of my world and I know I will feel the power of your prayer in the months again.
Scott and I got a chance to meet with Dr. Taylor’s PA for over an hour on Friday for my final follow up before surgery. We found out that my leak is really being caused by my the aneurysm in my aortic root. That means that there is a very good chance that they can repair instead of replace my valve. The surgery is called a valve sparing aortic root replacement. I signed the consent to receive the mechanical On-X valve if my valve cannot be repaired, but just knowing he feels that is a possibility makes me excited. They told me ALL of the details of the surgery and my time in the hospital. I’m definitely still processing all of that information, and all that is in front of me this week. Oh, and bonus…I should lose the 15-20lbs I have gained in first few weeks after surgery, I appreciate the love, prayers and well wishes all of you have sent my way and will continue to keep you posted.
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