About Me (In My Own Words)
Operation scheduled end of July. Biscupid Valve and rising
Hello Everyone, first of all, a big thank you to Adam and the community for giving me some comfort in the lead up to the big day. Personally, I have not really discussed it with many people because I actually dont want sympathy as such, I think I just want facts and practicalities. It must be hard to know what to say to someone who is going through what we are or have been through.
My Story: I live in the UK and I was diagnosed when I was a child of having a heart murmur, which was investigated through my groin. I am 46 now, and this was when I was around 10 years old. The result, as we can remember, was that there was nothing really wrong with me, we were certainly not told about the fact I may need surgery in later life, which I think was probably a good thing not to have to carry for 35 years. Perhaps I would have not been so active on the rave dance scene in my 20's had I known... Anyhow, forward to around 6 years ago, a doctor was listening to my heart and raised an eyebrow over my murmur. I went to my General Doctor to have it checked, but was unimpressed with how it was being handled, so I paid privately to have an echo. The diagnosis was that I had a bicuspid valve that was calcified and that I will need OHS to have the valve replaced. This was obviously bad news, as I am a fit, active man - still actually in better shape than most people I know. Over the last 5 years I have been to regular echoes and watched my stenosis move from mild to medium to severe and just before Covid I was told I had to go to surgery fairly quickly. This was delayed due to the virus.
The UK health system works differently to the US. The free National Health Service offers a good standard of care, which differs depending on the area you live in. It is 100% free, Most people living in the UK dont know this, but you can research your surgeon / hospital and ask to be taken under their care. I did just this, and travelled from Birmingham to Cambridge, a chose the surgeon with the best overall survival outcomes. I was offered the two main options - Metal or Tissue. Even though it meant re-operation, I chose the Tissue valve.
Once the day had come, I decided to look into other private options to get a second opinion. My first route to explore was the Ross Procedure and I paid to see an expert on the subject. He booked me in for a 4D MRI scan, which happened within a week and took 15 minutes to perform. This came at a cost, but was quick and super effective - better than what I had been given so far on the NHS. I was told that my valve was ovular which made a Ross Procedure sub-optimal. The discussion moved to valve options - which had not been offered on the NHS. I was offered the Inspiris Resilia, which I agreed to (Non available on the NHS). From the research I have seen, this looks to give the best long term tissue results, with a TAVR option for re-operation. Paying privatley will be in the region of £35,000 for the operation I am told. I was discharged from the NHS and decided to pay my way. Additionally to this, due to Covid, there is still a question mark over when my surgery would actually happen if I stayed with the free option.
Last week I was booked back to see my new surgeon, Mr Ulrich Rosendahl, and was told that I could have the operation at the end of July. My first thought was "Thats a bit soon". On the way home and it took me 30 minutes to get my head around the situation. I have been seemingly in the waiting room for 5 years since I was told about the condition. I have meditated the hell out of the thing, I have totally come to terms with it, but man, I just want to get it done so I can move on. Am I scared - of course who wouldnt be. Do I worry? Not really. Stoic thinking helps me, something which I find very useful. This is not something I have control over - if I do not get it done, I will die. I have done all I can to find the best options, so there is nothing more I can do so why over worry about it. So I dont. Well not much anyway :-)
More Info About Me & My Heart
More About Me
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I am from:
Kenilworth, United Kingdom
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My surgery date is:
September 19, 2019
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I was diagnosed with:
Aortic Stenosis
Bicuspid Aortic Valve
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My surgery was:
Aortic Valve Replacement
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My surgeon is:
Dr. Ravi De Silva
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My hospital is:
Royal Brompton
