Rob's Journal

Hi, it is three weeks since my operation and I thought that it may be helpful to others worried about "the other side" to explain where I am at the moment regarding the whole recovery. Of course everyone is different, as are the operations and circumstances and I can only speak from my point of view. I had a lot of advice from doctors and nurses whilst in hospital, but none of them had been through the actual operation - although they were quite correct on a lot of points. On the 19th September I had a replacement aortic valve (Edwards Inspiris) and a replacement rising Aorta. Originally I had banked on a Mini Sternotomy for recovery reasons but due to a change in surgeons was advised on a full sternotomy which I was quite worried about. The hospital where I had my operation had recently carried out a large study which indicated far less post operative complications with the classic full sternotomy as opposed to the Mini option. Anyhow - these are far wiser people than I, and although my inner self was shouting a bit about changing the situation - I went for it and gave myself over to the professionals.

The morning of the operation with surreal, and I went into the operating theatre positive and submissive. Whatever the guy gave me just before I went under made the world seem a pretty good place. Waking up in Intensive Care was pretty abstract with no pain. I remember the breathing tube, it was like dreaming I was just under water with a snorkel. But like I say, I was quite sedated, so really not an issue. As I came to my wife spoke to me on the phone that they had by the bed, that was nice - I dont remember the pipe being removed. One thing was for sure, I wasnt in pain from my sternotomy, and I was not distressed. As I came to more and more, my main issue was that my lung capacity was low and it hurt to breathe in deeply. This carried through for a couple of days, which was combatted with pain killers. I was out of IC within 20 hours, and onto the ward, within 48 hours I was in much less pain in my breathing. Not pain free, but nothing regular paracetemol and Codeine wouldnt solve. The bottom line here is that it wasnt a great couple of days, but it was way better than the little picture I had hidden in my mind - the one I didnt really want to look at.

Anyhow, I got steadily better and was out 5 days after surgery. My wife picked me up and drove me home one and a half hours. I was a bit pale as I was aneamic from the operation, but I could walk and easily handle the drive sitting down. My wife said I was a little withdrawn.

The next week was about doing a few walks, popping a few pills, and sleeping on a large cheese wedge shaped cusion in bed. Appetite was fine, could get around no problem. We are all shielding as a family due to the operation, and I have a 4 year old son. I could interact with him, but playing was too much. Making a cup of tea no problem, handling plates and making a sandwhich all possible. The recliner I bought on ebay has been a great help, would reccomend to anyone. By the end of this week I stopped taking any painkillers. If I am totally honest, I didnt need them. I said I did, but it was more like a just in case, or some kind of comfort. I had been on them for a couple of weeks and felt one day of slight withdrawl. Things could get a bit much for me at home in the first week or so, and I would just take myself off to bed. Getting dressed and showering etc all totally manageable, although at a very slow pace.

Into week 3. Able to cope around the house with most things and walk a couple of miles per day (although I was pretty fit before the operation) The chest feels like it is getting better and stronger, although I get clicks and twinges here and there. I can walk the dog, take my son out on a limited basis. Some days I feel much better than others. I feel so much better than I would have expected considering I had just had open heart surgery. I work every day for a couple of hours, although that can be tough because mentally I feel very woolly at times.

The full sternotomy for me hasnt been anything like as bad as I expected. I am 46, which helps, but if anyone is wondering how it feels, I can only say that it is uncomfortable, but nothing like you would imagine. I am weak in the upper body, and have to be careful in what I do, but I can function easily as a human being. That said, it is still a challenge, no doubt about it - but the thought is worse than the reality.

Anyhow 3 weeks from the operation and I am feeling very positive about things. I hear my heart louder than normal, and still know that I have had a major operation, but I can do far more than I had imagined. My only issues are with night sweats which hinder my sleeping, doctors have checked this out and its not an infection. It just breaks my sleep up through the night which can be tiring. One thing I would like to point out is that I have a lot of help from my wife. I cant lift anything over 5 kilos, I get tired easily, without her support it would be a tough tough journey.

I write this to perhaps offer some comfort to people going into the operation, and if anyone wants to contact me directly they can at rob@icls.uk - I will be totally honest about my experience and offer any help I can.

Good luck to you all!

Autumn Days walk with the family

Many thanks all,

In my hospital room having various visits from different characters, consents, ecg's and all that jazz. The Queen opened this hospital last year, the Royal Papworth in Cambridge. I think over there in America you have the edge on technology and advanced healthcare but I would like to think I am being looked after by Royalty this weekend!

If anyone is reading this is worried about going in for the operation, thinking that the closer you get the more worried you become - I can only speak from my experience, it gets better esepcially towards the end. It helped me to just let go. Speak to the staff, do your best to enjoy the process. The easiest part has been actually once I am in the hospital and all the fussing stops. My enthusiasm my be somewhat subdued however in the next 24 hours, but hey - it needs to be done.

Operation is at 8AM, which is great. The next you will hear from me will be on the other side.

Now, time to start watching Marvel movies in date order.

Hi all, firstly I'm sending you all positive wishes from the UK. Good to see that things are generally upbeat in here.

Had my preop yesterday, the brain tickler covid test and I'm about to pack for the hospital, scheduled for the table on Saturday morning.

Have been quiet on the site up until now as I have been getting on with life somewhat.

My mind gave me a little kickback in the last week but have now mentally given myself to the team at the hospital and this time next week I'll be back at home. The fighting starts after the operation. For now, it's time to relax, this will soon pass.

A big socially highly distanced hug to everyone!

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