I'm a 31 yo survivor of open-heart surgery to replace my failing aortic valve and a 5.2 cm aneurysm. I am the proud new owner of a mechanical heart valve, a pacemaker and an 8 inch incision. AMA
Short version: On Oct 16th I came into hospital (Johns Hopkins) to have my aortic valve replaced with a mechanical On-X valve via open-heart surgery. As a consequence of the trauma my heart took, I went into total heart block (3rd degree AV block) and had a pacemaker fitted. I spent 15 days in hospital. Thanks to the pacing wires inserted into my chest during the surgery, I was kept safe from an otherwise dangerous complication (complete AV block) that could kill me. The truth is, none of the doctors could tell me what my true heart rate was after the surgery, as even turning off the pacing led to weird effects. Even the electrophysiologists couldn't tell me what my real heart rate was, but it was likely <40 or some other absurd number, and therefore dangerous. The pacing wires kept me alive until a pacemaker was fitted on day 5.
Outcome: I want to thank a wonderful team of surgeons, doctors and nurses for getting me through this ordeal. I am now at home recovering, am on blood thinners for life and will enrol in a new study to see if mechanical valve patients can take alternatives to Warfarin [can't disclose more].
My background of how I came to discover heart disease: I had no diagnosis from birth, except I was always out of breath as a kid and never did the sports other boys could do. In 2004, at age 15, I was living in Latin America due to parents work. I contracted typhoid fever (don't ask...) and was on antibiotics for weeks. One positive outcome of this was that I saw a doctor, who heard a heart murmur and advised me to get it checked. Fast forward to 2007, I was living back in Scandinavia as a senior high school student. A chance illness led me to a local hospital, a murmur was once again heard, and some imaging tests revealed a bicuspid aortic valve, as well as the suggestion of light aortic insufficiency. The bicuspid valve is a common type of congenital heart defect (2% of men, 1% of women), in which two of the three parts of the healthy (tricuspid) aortic valve are fused together. This type of CHD is usually associated with Marfan or other types of connective tissue disorders (BUT NOT ALWAYS). Bicuspid valves do not pump blood as efficiently, and so usually result in calcium build-up and restricted flow (stenosis) as well as regurgitation (blood falling back; source of murmur sound). I was advised to get my heart checked in the future...
I moved to England shortly after in the autumn of 2007 to study chemistry. In my supreme ignorance about heart disease, late teenage/ early 20s arrogance, and quite frankly fear, I didn't get anything checked in Oxford, and I carried heavy suitcases (25 kg) back and forth Scandinavia and the UK. A ticking time bomb was building up inside my heart...
Fast forward to 2015 (8 years without medical check ups), after uni and a stint in France, I was pursuing a PhD in London and in denial about my heart condition. I chose to join a gym hoping to finally get fit. Within weeks of a bit of lifting, I developed a dull but constant chest pain that would not go away. I eventually called the NHS number 111 and spoke to the operator. I had to strongly ask him not to send an ambulance, so I walked over at midnight from my home in Borough/London Bridge to the A&E at St Thomas Hospital (in front of houses of Parliament). My complaint of chest pain was taken very serious, and I was seen around 3-4 am. Lots of racket that night, all kinds of stab wounds etc.. Upon hearing a very loud murmur, the doctor alerted the consultants on call, and most of his colleagues also came by to listen to my murmur. They decided to do an echo on me in the entrance part of the A&E... I was sent home... At 6 am, I get a call from the same consultant, to come back to St Thomas and bring some essential items of clothing, cell phone etc. I was terrified. Upon return, I was fast-tracked to a CT scan at 6:30 am, because there was a fear I might have a small tear in my valve. I was kept in observation until the morning team arrived. Luckily, there wasn't a tear, but talk of emergency surgery persisted. ... Morning consultant arrived, gave me a full diagnosis but luckily told me I was not going to have surgery yet... Diagnosis: A 4.9 cm aneurysm was present in my aortic valve, and I had moderate/severe stenosis (restricted flow) from a moderately/severely calcified aortic valve. The aneurysm is a dilation in the heart valve from the extra work the heart has to do to pump with a bicuspid (sick) valve, and results in a narrowing of the valve and constricted blood flow.
I was monitored closely in the UK after that until 2018 when I left to America for research position. I found a cardiologist here and within 4 months, I was speaking to a surgeon. I received the email on a Friday night, I was told to see a surgeon as my aneurysm now measured 5.1/5.2 cm, and I had severe stenosis. From the surgeon's perspective, I was a problem. I was told in the US surgery in a small-framed person is recommended for aneurysms of 4.5 cm. I was given 2 months to sort out my affairs (I lived alone in the US, my family all in Europe), and get dental clearance for surgery.
Life lessons: For me, surgery was the worst/most painful 15 days of my life and I would not want to go through this again. Maybe I'm a weak person [excuse the language] but I got about every kind of complication possible. Violent temperature swings (chills then fever), lost my voice completely (it has taken 4 weeks to sort of return), complete heart block, and 2 blood transfusions. Some people have a very easy time with OHS, but I really struggled. Age is on my side, so recovery has been quick, nevertheless. By week 3 I was walking 1 hour stretches outside, by week 4 I was seeing friends and going grocery shopping.
The blood thinners have been an added complication that required being on heparin drip and have my blood checked some days up to every 4 hours in hospital. While in hospital, I had a lovely line in my neck that was connected straight the vein that goes to the heart, which allowed them to extract blood easily, but once that was removed out of infection fears, I was being poked every 4-6 hours for 7 days. It was very painful. Outside of hospital: The diet for warfarin has been easier than expected, I avoid 6 kinds of greens completely and life goes on. Warfarin is no big deal, and I love the ticking sound of my On-X valve. I recently bought a wrist watch, to complement it.
The surgery has given me a second chance at life, and I feel supremely grateful for this chance. It's made me worry less about petty things, and helped me see the big picture. I hope it helps me be a better person than before, or at least to not take things for granted. If you have a murmur, get tested. If heart disease runs in the family, get tested please. Aortic dissection is a scary, but real prospect with high mortality rate. Having a sizeable aneurysm and not getting it treated surgically can lead to aortic dissection.