hi I had an echocardiogram in August and got the result in September . The local hospital has been tasked with doing further tests and paperwork before handing me over to Leeds which is apparently the best hospital around for cardiac care . I have now had 48 hour ECG plus a CT angiogram which included the use of dye that have confirmed my diagnosis . I now feel in limbo waiting to see what happens next . One cardiologist mentioned open heart surgery as my aortic stenosis is moderate to severe does anyone have any idea what happens next or even time frame etc. thanks
Vickie
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Vms49
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I feel that the only way to find out a time frame is to ask the hospital - have a look at the letter which gave your results. Someodne’s secretary might be able to tell you.
It will be different in different parts of the country and dependant upon how severe the experts think your problem is.
Be glad that you are being looked after (even though slowly perhaps) and that you’ve had some diagnostic tests and are in the system.
It is common to have stenosis measured until it’s severe/critical. By far and away the worst part of valve replacement is the waiting, exactly where you are now.
I went through the same. But when the consultant got the final reading then everything moved fast. Consultant rang me from her home on a Sunday.
I was very alarmed and wound up. But as soon as I walked through the cardiac ward doors, the fear and alarm melted away. The staff were a different class.
I had the three pre op tests as in inpatient but generally you have the three tests as An outpatient. I had an excellent single bed room and all was smooth. Surgeon discussed TAVi or OHS. Then the op.
Brilliant. Excellent. Wish the whole NHS ran like this
You may already be aware of these points, but just in case...
If you reach the "severe" stage, they should be offering you treatment options. If you become symptomatic (shortness of breath, swollen feet, etc), then the urgency should be accelerated to avoid long term damage. I was asymptomatic when I had my surgery.
If open heart surgery is chosen, then be sure they check out whether or not you also need CABG and/or mitral valve surgery. Get dental work done in advance because there will be a no-dental-allowed period after surgery.
You may be offered a choice between mechanical vs tissue valve type. Explore that carefully as your age and other factors should be considered. There are tradeoffs, but you will probably want the option that minimizes the chances of needing a 2nd surgery years down the line.
Another great website for valve replacement patients is here...
Thankyou my initial echocardiogram results say moderate aortic stenosis and I then had to have other tests eg 48 hour ECG and CT angiogram but still waiting for a further echocardiogram but reading my NHS ap they now refer to it as moderate to severe I have breathlessness and although I don’t get pains in my arm my chest pain travels up my chest into my jaws and neck . I don’t have any appointments as yet but a letter from the hospital a month ago to say that I am awaiting an appointment with a cardiologist and also with the TAVi team but it’s now I’m beginning to worry (panic) as I seem to be using my spray every week . I’m going to ring secretary of consultant whose name is on the letter . Thanks for your response Vickie
Hi Vickie,I live in the West Country and it was about 5 months after I was diagnosed as 'severe' before I had surgery. Often people can go a long time between categories. If you are asymptomatic, then often they will put you nearer the bottom of a list. They did all the pre-surgey tests on me, to check I didn't need anything else whilst under, CABG, for example.
I had my surgery in Bristol over 5 years ago now, and can't fault the staff, the surgery or the whole process.
If you have any questions, don't be too afraid to ask. There are many post op patients on hear, from all around the country.
I have now reached the Cardiac team and have much more confidence and accepting of the fact that I need open heart and now understand that the tests are necessary so they can do anything else that needs doing while I am “ opened “ the surgeon says “ one zip fix all “ lol
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