I had a diagnosis of Aortic Stenosis, classed as severe in early September 2023.
I am classed as 'Urgent' on a waiting list for aortic valve replacement but I am told I am on the bottom of the list and no date is forthcoming. My surgeon wants me to have a CT Calcium Score test ASAP but nothing has been arranged after a month of waiting.
I was prescribed a low dose beta blocker, to help with my high heart rate, but had to wait 35 days before the prescription was issued. This is typical of my journey: clinic letters and transfer of documents are just not getting through - up to 40 days in one case. I suspect the electronic transmission and IT systems in the NHS are completely dysfunctional : a scandal awaiting full reporting!
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Minousdad
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hello , my case is very similar to yours . Mine started at age of 65 with a heart attack followed by aortic stenosis diagnosed. Monitored for 6 years after needing 5 stents during that period. Finally had live tissue replacement valve during covid in October 2021 in Bristol. It was a bicuspid valve , quite rare, that is hereditary which the surgeon had crafted from bovine tissue. All was successful , but uncomfortable for the first week but recovered well and now over 3 years have passed.
I had a few admin problems prior to op as the pre op test data went missing but I personally wrote to the surgeon and things progressed eventually. Post op I attended rehab classes but after moving house to Shropshire these stopped and I now do exercises on UTube BHF videos which help greatly when I am self disciplined enough.
Good luck in getting your op done soon , keeping pressing!
Thank you for your reply. Your experience is encouraging. I wonder how you managed to write to your surgeon. I have an email for my surgeon's secretary and I can phone her but did you send a letter addressed directly to him/her ?
I had the surgeon’s name and addressed it to the Cardiology department. I took the trouble to write it using pen and paper and put private and confidential on envelope.
I am sorry to hear of your diagnosis and delays. I'm a soon to be retired GP who had an aortic valve repair last August for a stenosed bicuspid valve.
I think if you have not heard yet about your CT you should contact the CT department of the hospital to see if they have got the request and it's in a list waiting for an appointment. If they haven't got it you'll need to get onto the secretary of the surgeon to ask him to issue another one!
The delay in you getting put onto a a beta blocker are appalling. Was this a delay in the letter to the GP getting typed or the GP acting on it? You might need to find out from your GP when they received the letter. In my experience the delay is usually with the hospital. Once a letter is typed it usually goes through to the GP very fast but there may have been a delay in the specialist signing it off for sending. If that is the case I think you should complain to your MP and to the hospital because complaints are the only thing that gets counted and sometimes they have an impact. It sounds like the hospital may not have enough medical secretaries and needs to employ more, but perhaps there has been a delay because of other problems.
Find out which computer system your practice has - they're usually one of two - EMIS or SystmOne. Both companies have apps that enable you to see all of your file, including all the blood test results, all prescriptions and all letters to and from the hospital. Sometimes practices have to switch on the ability for you to see everything but most have already done it I believe. The SystmOne apps are called SystmOnline and Airmid. The NHS App might allow you to see some of it. I find it a big help to be able to see what's going on. That said not everything is transmitted to GPs so I have had to fill forms in with my local hospital for accessing records so that they can send me scan results, the full detail of which they had not sent to my GP.
While you wait try not to get overly stressed. Try to do some very gentle exercise such as walking unless you have been advised not to. I would not swim, or ride a bike as these activities could be fatal if you have an arrhythmia at the wrong time!
By the way, I had a metal valve and am now stable on warfarin. They last longer although having warfarin tests is a bit of a pain, even with my own testing machine. If your specialist says your ok to have a pig valve go for that, but base the decision on your age and the likelihood of needing another one. You don't want to have the surgery twice!
Now I am getting towards six months post surgery I am starting to live a normal life again. The discomfort in my chest has nearly all but gone and I can do some upper body weights and can cycle for half an hour - on my static bike, given the time of year.
Thank you for your very helpful reply. The 1.25mg Bisoprolol are really helpful in that my heart rate is 20 beats fewer per minute whether at rest or mild exertion. I think the delay was partly due to the transmission of documents, as you suggest, but it was compounded by the fact my surgeon had not specified which drug to use and so the surgery had to write back to the hospital. I have heard that the request for a CT scan has at least been received. It is already 6 weeks since it was requested ASAP by the surgeon. I have raised a concern with PALS and they are looking into it.
I wonder if my surgeon wants me to have a CT Calcium Scoring so as to know how to proceed. In my consultation at the end of November he suggested a valve replacement using a tissue valve. I easily get nose bleeds and this may have influenced the choice. He's a professor so I wonder if he's thinking of the latest TAVI solution? I thought this was only for the old and frail which I am not!
Meanwhile I do have the Airmid and NHS Apps. Also the Patients Know Best link but NHS staff don't seem to know much about it! It's thanks to these sites I have known a little about what is going on. Without them I would have missed appointments and wouldn't even know my Bisoprolol prescription was ready to collect.
I am encouraged to read that you are getting back to normal and I hope 2024 will eventually bring me the same joy. I will have a look at your blog next...
Yup, I too would have missed appts without all those apps, which, as you say, some hospitals know about and others don't. It's difficult to complain to your surgeon for not putting in the detail of dose when you've yet to go under the knife, but it would have been helpful as the dose range is 1.25 right up to 10mg!
I expect the surgeon is keen to find out how clogged up, or not your coronary arteries are. If they are, it increases the risks of an on table heart attack (blockage of a coronary artery) It may also depend on whether he/she is thinking of replacing any of your aorta. The coronary arteries come off the aorta, immediately downstream of the valve. Apologies if I'm teaching you to suck eggs. It's more fiddly surgery and more risky, but you definitely want to get it all done in one go if it's needed. My surgeon decided when he was in there, not to replace any of my aorta. I hope it never needs doing! I've just had my first post op echo but not had the results yet, and I'm expecting to have a CT at about a year post op for accurate measurements of the aorta.
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