How long is it safe to wait for TAVR once they've said "severe"? Terrified something happens before my date

#1Edith R(Joined May 2026 · 12 posts)June 24, 2026, 4:38 pm

I am 77 and three weeks ago the cardiologist told me my aortic valve is now "severe" and that I should have it replaced. He was kind but not in any rush, and I have a follow up with the heart team in about five weeks to plan the TAVR. Five weeks feels like a very long time to me.

The thing I cannot settle is this: if it is severe NOW, and severe is the dangerous one, why am I waiting weeks? Every twinge in my chest I think this is it. I get breathless carrying the shopping in and I sit on the stairs convinced I am about to be one of those statistics. Am I being daft, or is it actually risky to wait? How long did you all wait between being told and having it done, and did anyone feel safe doing it?

#2TwoNightsTerry(Joined Feb 2026 · 63 posts)June 25, 2026, 8:11 am

Edith you are not being daft, I did the exact same maths in my head. Mine was about six weeks from "severe, let's do it" to the actual procedure, and I spent most of it convinced I was a ticking clock.

What the nurse explained to me, and it did help, is that the danger with severe aortic stenosis climbs steeply once you get certain symptoms, not just from the number on the scan. Breathless carrying shopping she said to mention. Fainting, chest pain that comes on with effort, waking up gasping, those are the ones to phone about the same day rather than wait for your appointment. Ask your team directly what your red flag symptoms are. Having a clear list of "phone now" vs "normal" took the edge off the waiting for me.

#3Diane FarrowFounder(Joined Jan 2026 · 214 posts)June 26, 2026, 10:47 am

Edith, I want to answer this properly because I sat exactly where you are sitting, at 74, told my valve was severe and then handed a date that felt impossibly far away. The short version: a planned wait of a few weeks, with a clear plan and a number to call, is the normal way this is done, and it is not the same as being left to chance.

Here is what I came to understand while writing this site up. Severe aortic stenosis becomes urgent mainly once it is causing symptoms, and the reason your team takes symptoms seriously is that once severe stenosis is symptomatic the outlook without treatment drops sharply, the figure often quoted is around half of people at two years. That sounds terrifying written down, but that is the untreated, over a long stretch picture, not the risk of a few planned weeks in a monitored patient with a date in the diary. Being breathless with the shopping is worth telling them about, because symptoms can move you up the list, and I would ring and say so rather than saving it for the appointment. The whole condition, and why symptoms are the hinge, is explained in what a narrowed valve actually does.

What genuinely helped me through the wait was two things. First, I asked the team point blank which symptoms meant "phone today" and which were just my new normal, and I wrote the answer on the fridge. Second, I understood that the weeks were not idle, they were doing the CT scan and the assessment that decide the safest way in, which is the process described in how they work out whether TAVR is right for you. The waiting has a job even when it feels like nothing is happening.

Please do ring your team with the shopping breathlessness though. Your specifics are theirs to weigh, not mine, and that is exactly the sort of thing they want to hear before your appointment rather than after.

#4Marlene K(Joined Mar 2026 · 31 posts)June 27, 2026, 1:20 pm

One real data point for you Edith. I told my GP I'd started getting dizzy standing up and short of breath on the flat, and my whole timeline sped up, the heart team appointment that was "in a month" became the following week. Symptoms genuinely are the lever. Don't sit quietly being stoic about them like I nearly did.

#5Ron Castellano(Joined Feb 2026 · 47 posts)June 28, 2026, 7:05 pm

Can I add the flip side, because I had the opposite wrong idea. Mine was severe on the scan but I had almost no symptoms, and I convinced myself that meant I could put the whole thing off for a year, maybe wait until I "really needed it". My cardiologist gently took that apart. Severe with no symptoms gets watched closely, but the moment symptoms arrive the clock changes, and symptoms can arrive suddenly.

So the mistake works both ways. Edith is worried the wait is too long, and I was daft enough to think I could stretch it to twelve months. Both of us needed the same answer: let the team set the pace, and tell them the instant anything changes.

#6Edith R(Joined May 2026 · 12 posts)July 5, 2026, 11:52 am

Thank you all, this thread calmed me down more than anything the leaflets managed. I rang the heart team nurse on Monday and told her about the breathlessness with the shopping, exactly as you all said. She didn't panic, but she did bring my planning appointment forward a fortnight and gave me the direct number and the list of what to phone about. Just having that number by the phone has changed how the waiting feels.

Diane, "the waiting has a job" is going to be my mantra for the next couple of weeks. Will report back once I have a firm date.