The Caretakers' Forum

Sorry to hear of your latest medical issues HarleyPete, take care look after yourself and keep smiling

Sorry about this latest news Harleypete. Best wishes to you

Drone wrote: ↑22nd Feb 2024 at 7:07pm Right, this is is how it worked for me i was blue lighted into a hospital which decided it that it didin`t have the cardio unit to deal with my problem. I was transferred to RSCH Brighton, which has the best cardiac & CICU in the south. It took me 16 hours on a trolley in A&E before being moved to a cardio ward. I don`t recall all the tests that I had prior to surgery about 36 hours later. My diagnosis was Aortic Stenosis. One of the valaves in my heart had packed up and must be replaced. A valve from a pig was used. Although a mechanical valve could have been used. I was in theatre for about 7 hours. Recovery has not been slow considering the size of the op . I am still tired but I am eating & sleeping better 2 weeks after surgery. I experienced very low mood swings. But this is by no means unusual

Sorry to hear that Drone. I had an appointment yesterday (23rd Feb) with the surgeon who basically went through what would happen and the timeline. All in all will possibly be something like five months before I could be sorted out (around 4-6 weeks before they even discuss it). His parting shot was that the one worry was Aortic Dissection and that those that this happens to don't normally survive unless they are really really lucky. Guess all I can do it look after myself and be careful. Even the wife was like "well he was a ray of sunshine wasn't he".

Be clear that you have one big advantage. You are not being blue-lighted. Yours is a planned procedure. They will have all the bases covered. My own procedure was not a new one. It has been around for 35 years. They will give you a list of things that can go wrong with your consent form. They do not go wrong. You can be hit by an asteroid whilst walking across Asda`s car park. You won`t. You will be shipped out to Cardio ICU for your recovery. If you have any rotten teeth, they will have to come out before surgery. I had free dental work to the tune of 3 extractions. The follow-up drugs that you will be on will likely give you a dose of Diarrhoea . You are likely to be advised, on discharge, to come back to the cardio team if you have such a problem. It may be quicker to phone them & you will get better advice than calling your GP. I think I will have to do that. Also in the follow-up you may be contacted by your Community Neuro Rehab Team. It is stupid to say don`t worry. If you are not worried you are not paying attention. But I had no idea how advanced heart surgery had become. The rehab is difficult & uncomfortable. But every day of it brings that 100% recovery that is possible a step closer. The harder you work, the quicker you get well. And, yes... I do need to take my own advice. PM me if you want to chat. Although these exchanges may be of help to colleagues who are travelling the same road as us.

A bit of an update on how things are.

Having had a consultation with the surgeon back in February I've waited for the follow up. I was told, at the time, that it would be four to six weeks before they discussed it and then up to three months before something might happen. Well last week after having a polite dig at the cardiologist I got a call from the surgeon. Bearing in mind that it was almost eleven weeks since I saw him.

Basically, he told me they had "lost" me in the system!
He then went on to say that due to guidance from europe and the fear of a general election they couldn't do me yet. Apparently, no money is being poured into the NHS due to the election possibility.

So now I'm on another six month wait before they "review" it and see where I am.

What's more frustrating is the fact that the surgeon could barely remember what he'd said or indeed, what things had been done to gather information.
He thought that I had been given another scan in the interim and that they results were not bad. That was until I pointed out that he himself had given the measurements as more than he thought they were. Currently my TAA is sitting at around 54mm which is almost the limit (bar 1mm) for my valve morphology.

Perhaps if I had been a patient at his Harley Street Clinic I might be getting a different outcome (well that's how it feels).

Rant over

Thanks for taking the time to update us Harley Pete.

Sad, but not surprising, to hear of your issues with your treatment. We all hear of issues but when an individual experience is detailed it leaves you shaking your head.

Hope that your surgery happens sooner than expected. Keep battling.

Sorry to hear that Harleypete,

Hopefully having messed up they will push your priority.

This is the shame of a government that does not fund the health service correctly and instead are hoping that everyone will go private to jump the queue and in the process make the NHS become so unfit for purpose that it will shutdown and be replaced by private medical.
With the best will in the world we only have to look across the pond to see how that works out..

HarleyPete wrote: ↑19th May 2024 at 7:36pm A bit of an update on how things are.

That’s a disappointing update mate, sorry to hear that. I do hope you get your surgery soon and your recovery is also swift so you can move forward with your life.

Thanks all. The support that has come from the members on this site is truly humbling. I cannot express my thanks enough for those who have taken time to reply.
It is frustrating indeed, I can but keep plugging on and hope that things don't get any worse. It's so difficult to try and have a positive outlook when everything feels like it's against you. I've got an echo cardiogram tomorrow and an angiogram on Friday so they will be fun. Will admit, the thought of having my wrist cut and something pushed up an artery into my heart whilst I lie there does not appeal.
Hopefully though nothing will happen and it will be routine unlike my brother in law, who had three stents fitted and pegged out on the table. Fortunately, they revived him and he's okay now but I didn't like the sound of that.

The echo cardiogram is non-invasive. The angiogram is completely painless. You get to watch your heart beating on a sort of home cinema screen. The canula is also painless. Trust me, I was totally phobic about any medical procedure. If it was painful, I`d say so. But it is not.