Rob's Journal

What with COVID and all, my date is still not confirmed. Current time is w/c 3rd August, which is fine with me. In fact a lot is fine with me oddly enough. If you would have asked me how I would imagine myself feeling with two weeks to go a few years ago, I would certainly say probably terrified. Unimaginable. But here I am and I am totally at peace, a period of clarity in my life, in fact it’s everyone else that seems to be worrying. I do bang on about it, but I do think that meditation has helped a lot and would recommend it to anyone heading for the waterfall. If anyone needs any Help with this, do let me know. Anyhow- perhaps it’s a natural reaction to an upcoming event like this, because let’s face it, why waste time worrying about this when you have some time to really live. A bloody date would be nice though. Oh, and a letter saying it was all a mistake and they had mixed up multiple echocardiograms and really I was fit as a fiddle.

I hope you are all doing well, and I just thought I would have a ramble

Hi, My date has been set for the 27th July, subject to a possible few day's delay. Trying to keep in shape and get organised ready for the big day. Part of me wants to get it out of the way, the other part saying "hey fella, no need to rush into this"!

I am in the UK and tried to order a Sternum Shield from this site, but they wont ship internationally - If anyone has a spare one they are finished with, please let me know - I can send in a courier to collect and will happily pay for it...

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 :-)

I would like to ask you all a few questions on the the recovery side of things but first I wanted to tell you my story.

Any comments / questions anyone has on my route so far or my chosen options would be grafeully received.

One again, great to meet you all and the best of luck to all of you, wherever you are in the process.

Rob