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My Story - Valve Sparing Aortic Root reconstruction

  • 1.  My Story - Valve Sparing Aortic Root reconstruction

    Posted 04-01-2021 08:32


    I left the fulltime army in 2017 and have been a reservist from then until now. In 2019, at age 28, I was having a routine army medical which included an ECG. I had plenty of these while serving, never with any issues. On this occasion my ECG threw up an abnormality which suggested LVH (Left Ventricular Hypertrophy). The nurse assured me that it was probably just a weird reading and young/fit people often have weird readings on ECG. I was told to attend a cardiologist for an echo just to be sure. Turns out that my left ventricle is fine, and my cardiologist had no explanation for why that reading would have come up on an ECG, as my heart rhythm was completely normal. 
    "HOWEVER" she mentioned a good 20 minutes into my appointment... I do have mild-moderate aortic root dilation. Measuring around 43mm at the aortic root and ascending aorta. "What the fuck is an aortic root?" I thought... My understanding of anatomy at this stage in my life was limited to HR thresholds for physical exercise. I was later sent for a confirmatory CT scan. Luckily for me, my aortic valve appeared tri-cuspid. Which as you all know, is a big win for someone in my situation. (Looking back, if this complete fluke of an ECG leading to a follow up with a cardiologist hadn't occurred, I may not have been around for much longer). 

    At the same time, astonishingly, my father - my best mate and hero, had been diagnosed with severe aortic valve regurgitation and mild aortic dilation. This happened STRAIGHT after I had my scans. He was 60 at the time, and probably one of the fittest blokes I know. He'd been a cyclist for 30 years and still races B grade on the weekends and regularly beats dudes my age and does it with style. A great father, smart, funny, a piss taker and only staunch when he needed to be. Everything that I still look up to and aspire to emulate. 
    The old boy was in theatre a few months later and gets the AVR with a bio valve. It all goes well and he recovers with nil issues. Almost too easy for the old bastard.

    After the dust settled, the plan was to monitor my aorta over 12 months and watch for growth. I began learning about the restrictions and recommendations for someone with a dilated aorta, and slowly my world was turned upside down. I looked back over the last ten years and the beatings my body had taken both in the gym and in the pub. I had gone pretty hard. Confusion over the causality of such a condition reigned supreme in my mind. Genetics? Lifestyle? Luck? Bit of everything? Most likely the latter. The plan was to wait and watch. Maybe it would stay stable and I would never require surgery? My cardiologist whom I didn't choose, and was assigned to me by the military, told me I should try to avoid the surgeon's knife at all cost. I know many of you on this forum are in the waiting room, and I empathize with the stress of marking time and feeling like you're the only person who is taking this seriously. In the 12 months of waiting for my next CT to confirm any growth, I had some horrendous experiences with cardiologists who's bedside manner was up their arseholes. Watching them look up my case after I'd seen them multiple times and remind themselves of what the story with my aorta was frustrated me. Now I realise that cardiologists have heavy caseloads, often hundreds of patients, and I was being a brat by expecting the red carpet rolled out for me whenever I walked in there. But fuck it, I was the man in the arena at the time, and I would probably behave the same way again if I had a time machine.  

    I was offended by my cardiologist's suggestion that I could only lift 20kg from now on, so with the help of my fiancé, we found a second opinion in the form of a sports cardiologist in Sydney who wasn't going to wrap me in cotton wool. He was a lot more supportive, and provided me with studies, evidence and videos which would fill me with confidenceHe spoke of an NBA player who had returned to the sport after his aorta was replaced. He sent me this video - which is a lecture from David Tyrone who pioneered his method of Valve Sparing Aortic root replacement "David's Procedure", the end of which details many athletes and soldiers who have returned to active duty after the surgery. https://www.youtube.com/watch?v=4n1w_ExKEUg  


    Fast forward 12 months of anxious waiting and deep internet dives into the darkest corners of cardiothoracic medical history. Turns out Albert Einstein died of a failed aortic graft... I'm in good company, I thought. A younger more confident me would have said HE was in good company. I laid down on the CT machine bed. A few deep breaths before the machine whirred to life and a big old canula is inserted. I'd been here before, but not like this. I knew there was something wrong this time, it was just a matter of how bad. As you know being slowly inserted into the CT machine is almost like getting slid into a portal to another dimension. "Take a breath in and hold" ....Yeah yeah whatever..." Breathe normally" ... Drive thrusters to warp speed captain...The results were prophetic of certain surgery in short order. A 50mm aortic root and ascending aorta! 6-7mm growth in 12 months! 

    Deep down I was quietly shitting myself. I began to pass through the stages of grief. I was totally and utterly devastated. I began asking the big questions, wondering what life was all about, and how the hell I was going to reinvent myself? All I'd known was the military and physical labour jobs. How could anyone understand? I looked at people who were wasting their time and lives on what I perceived as trivial things. Again, in hindsight, all fairly tragic on my behalf. I wish I had found this forum 18 months ago for a bit of perspective. I needed someone to look me in the eye and tell me stop being so self-important. How special did I think I was? There are people in way worse conditions with way worse prognosis', and I knew that deep down, but I had been dealt low blow. 


    Enter stage left my cardiothoracic surgeon. I won't post his name on here, but if anyone in Australia who is in the waiting room is interested on this forum, DM me and I can provide his details. Let's call him Professor Peter. The man was a complete gangster. Swagger and confidence in spades, no bullshit, no hand holding, just science and evidence based approach with an aura of competence which was exactly what I needed. He laid out the facts. I expressed my concerns and they were met with a calm expression of the data. "Well that's just not what the data show's" he'd tell me. He'd say things like, "You won't need to worry about restrictions after the surgery because I will have fixed the problem" … It was the confidence booster I needed. My fiancé, sitting next to me, was anaylsing me quizzically. She'd look at him, and then back to me, I'm sure she thought I was about to offer him any sexual favour that his huge surgeon brain could dream up. I probably would have if it came to it. As we had private health insurance, it wasn't required. But the offer is still there, Prof.

    I was scheduled for surgery. He told me there was a good chance he wouldn't be able to save my native valve and so I would have to consider what valve I wanted. I did some weighing up, and I decided with the bio valve. I know a lot of you on this forum have had great experience with the mech valves, and that living with blood thinners can be adapted to, but in the end it came down to limitations of physical capacity, slight though they are, which steered my choice.  

    The surgery and following few days, which was only 6 weeks ago, was a wild ride. At this point I had accepted any possible risk, and completely resigned myself to the hands of the surgical team. I had made my peace with it. I think that is really important to do. Because I'd had all the anxious nights and stressful conversations, and re-writing of wills etc etc in the previous weeks, I really tried to soak the experience in. My mind was clear. I was fully in the moment. If the worst should happen, I didn't want my loved ones, especially my fiancé, to see me a bubbling mess in my final moments. I wanted to face mortality's rising tide with an attitude that I would have been proud of. We joked and laughed and told each other we loved each other over and again right up until I let go of her hand and was wheeled into the operating theatre. The last thing I said to Professor Peter was to have fun in there. 

    I woke up still intubated. What the fuck? I thought. I knew this was likely to occur but for some reason my brain had erased the last 24 hours. It took a few moments for me to realise what was going on. I felt my beautiful fiance's hand and I subconsciously drew "I love you" on her palm. I don't remember doing this, but I'm happy my subconscious thought of itMe being romantic whilst intubated with a catheter in has won me weeks of sympathy sex. (I'm joking, you can't do that for a few months)

    She had a rough time. It was tough seeing me like that. She made her way to the bathroom of the ICU where she feinted in the toilet. I didn't realise while I was in hospital, but her short visits were difficult because I wasn't my usual self and the nights at home without me were worse because I wasn't responding to texts with my usual levels of gusto. But she was in my thoughts always and she was what kept me going. I had to make it, our wedding was only 2 months away. (two weeks away at the time of writing) 

    The first 24 hours in ICU was absolutely great. I was off my chops on drugs, and spent my time telling nurses how I was going to be out of there in 4 days. Professor Peter said it was a "Textbook" David's procedure and he was able to spare my native valve. A big win! 

    The next 24 hours were not goofor me. While everyone was patting each other on the back about how textbook the surgery was, my IV fluids were mismanaged in the ICU and I ended pretty much dry on day 3. That morning I had a whole heap of morphine and went for my first walk around the ward. When I got back my blood pressure plummeted to 80/40. Finally, some excitement. The nurse ran to get the ICU docs and there was some quick decisions made by some very capable people sorted me out. They were unsure about why my fluids were so low that morning. I was completely dehydrated. The ICU doctor took responsibility for it which I thought was extremely professional. No harm done, I was back to 120/80 and attempting to fire on all cylinders. I didn't realize that I had no cylinders left. 

    What followed was a very slow week in the ward. I had some pericardial effusion post-surgery which prevented me from my glorious day 5 discharge. I had genuinely pictured myself strutting out of there with my bag over my shoulder on day 5 wishing everyone adieu. A very immature thought, but I think confidence is needed, even if its contrived confidence. I had some crazy emotions running, which is to be expected. I'd find myself crying uncontrollably one moment, to laughing the next, can heart surgery give you bipolar? 

    Normality comes, but its slow. I'm on week 7 post-surgery as of this coming week, and I am feeling a lot more normal. My haemoglobin has slowly risen, which when it was low really effected my ability to do much at all. Still in pain, however I'm only taking paracetamol. I went home with Palexia, but that stuff was pretty hardcore and it made me feel sick. Plus, my old man didn't use pain relief after his surgery, so I didn't him to have any more ammunition on me. I'd already had a way worse recovery than him. One of the hardest things for a young man is the boredom. 7 weeks of sitting at home doing nothing, but it has given me plenty of time to reflect.


    My recommendations and advice for those awaiting the knife;  

     

             Find a cardiologist who will support you. Trust me, knowledge doesn't make you smart. It's    your employment of knowledge that is the difference.  

    • This forum is extremely useful and has helped me a lot but be careful of know-it-all's. My surgeon, who is one of the best in the country, told me that there are still lots of differing opinions in cardiology. If there's inconsistencies in the scientific community, imagine the inconsistencies online.  
    • Prepare mentally pre surgery. Meditate, accept your situation. Accept you will have days of despair, but you will get through this.  
    • Patience post surgery. Normality will return, remember why you had the surgery, most likely because you had no other choice  
    • Enjoy the experience, take a few deep breaths in hospital and soak it in. Not everyone gets a dress rehearsal with mortality. Your life is going to change for the better.  
    • Many people told me that I would have no issues because I am young and fit, but I had a few post-surgical complications, including my brush with death in the ICU. Expect there to be ups and downs, but you are in good hands.  
    • Contribute to this forum or other forums like it once you survive! It has helped me no end. 


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    Wiles Darkwinter
    NSW
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  • 2.  RE: My Story - Valve Sparing Aortic Root reconstruction

    Posted 04-02-2021 08:05
    Wiles, you have a gift for writing and story telling. Please consider starting a blog or writing a book to share your experience. You had me hanging on every word!

    Leah

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    Leah Rehberg
    Three Lakes WI
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  • 3.  RE: My Story - Valve Sparing Aortic Root reconstruction

    Posted 04-03-2021 05:08
    I absolutely agree with Leah.  Wiles, you are very talented and tour next career awaits you if you want it.

    Best of luck and good health.

    Ira

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    Ira Reid
    Hoboken NJ
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  • 4.  RE: My Story - Valve Sparing Aortic Root reconstruction

    Posted 04-03-2021 22:43

    Thanks guys! 

    That's very kind of you to say!

    Regards, 



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    Wiles Darkwinter
    NSW
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