Length of time between echos

[daVinci]

First off, I hope everyone is doing as well as they can be during this time and staying healthy.

Unfortunately and also understandably, my March echo was cancelled due to covid. I have just been sent an appointment for a new one for March 2021....

This means that it will be nearly 3 years from my last echo to my next, which doesn't seem safe to me.

At my last echo (2018) I was sitting on a valve area of 1.1cm, peak gradient 57 and peak velocity 3.8... so the upper end of moderate stenosis, alongside moderate regurgitation also. EF 55%.

What are your thoughts?

What frequency did you have echos at a similar valve stage?

It's hard to know if I'm being irrational by wanting a sooner echo vs. the covid situation, which I'm hoping I already have (possibility immunity conferring? who knows) antibodies for.

Thanks in advance for your opinions!

 

[Protimenow]

I can't give you feedback about the frequency of echos - but I suggest you contact your Cardiologist and adk for his or her opinion -- the scheduling staff may not adequately know the details of your case.

FWIW - when I was in the hospital, I had two echocardograms -- the tech was fully masked, I had already been tested for COVID-19, and this didn't seem to be a major concern to this echo tech. (Of course, her arms were six feet long, so there wasn't an issue about social separation.)

Tomorrow, I'll get set up for a 24 hour holter monitor. I'll wear mask and gloves when I go to my doctor's office, and I would be surprised if the person who hooks me up isn't also protected as well or better.

Even in these times of COVID-19, there are SOME procedures that override the rules - and extreme caution by patient and caregiver may override these concerns.

(FWIW - I had an EKG in my electrophysiolgist's office on Thursday. The tech who hooked me up didn't seem concerned - she wore a mask and gloves. My doctor came in wearing mask and gloves, he was already familiar with my case. He looked at the EKG, didn't have to touch me, changed my medications and discussed options).

So - check with your cardiologist, he or she may want to push the test up for you.

 

[tom in MO]

My personal experience was an echo every few years, to an echo every year, and then, you need to get this fixed in the next couple of months. I was told that valves suffer a slow decline and then a fast one near the end.

If you are on the every 2-year plan, you're not high risk yet...I'd guess not being a doctor If you are concerned, I'd ask your cardiologist why it was extended a full year as opposed to say 3-months. Was it based upon your specific case or was it done by a scheduler with no thought to you personally.

 

[caro]

Hey there! I don’t think you’re being irrational at all. I would feel the same way. When I was first diagnosed in high school (16 years ago), I had echos every six months. A couple years later, my cardiologist had me do them every year. When I moved to NY, my new cardiologist had me do them every year as well. I just had surgery this February. I am bummed that my 6-8 week after surgery echo was canceled because of the virus. I’m pushing for that to be scheduled. Best of luck with everything! Hope things return to normal asap!

 

[epstns]

I agree that this is worth a conversation with your cardio. He/she will need to delve into your current status, symptoms, exercise tolerance, etc., in order to develop an opinion as to whether an echo now is critical or not, and if now is not the time, maybe sooner than a year out.

Not wanting to add anxiety to your day, but if you look back into the archives here you will find the statement about stenotic valves to be, "The worse the valve gets, the faster the valve gets worse."

If they can't get you in for an echo, at least get some up-to-date advice on what to watch for to indicate worsening of your situation.

 

[daVinci]

Thanks for your advice everyone.

The NHS admin had automatically scheduled my echo for my annual March visit and not rescheduled my missed one this year it turns out.

Was it based upon your specific case or was it done by a scheduler with no thought to you personally.

You were spot on with the second part.

I'm supposed to be on annual echos, but when I turned up in 2019, they hadn't booked one and it was just a clinic visit- another admin mix up.

I've got one scheduled for June now, so hopefully it goes ahead. Despite my hospital now being a designated covid one!

It'll be such a relief to have some peace of mind.

I imagine the likelihood of it decreasing from 1.1cm to 1cm or less is reasonable over the course of two years, especially as my peak blood pressure during exercise tolerance testing now falls.

It's a lot of fun this waiting game.

Hey there! I don’t think you’re being irrational at all. I would feel the same way. When I was first diagnosed in high school (16 years ago), I had echos every six months. A couple years later, my cardiologist had me do them every year. When I moved to NY, my new cardiologist had me do them every year as well. I just had surgery this February. I am bummed that my 6-8 week after surgery echo was canceled because of the virus. I’m pushing for that to be scheduled. Best of luck with everything! Hope things return to normal asap!

I hope this gets sorted. Best of luck.

 

[Astro]

I think that 2 years is a rather large time between echoes considering your last measurements which were close to severe. A BP drop during exercise tolerance testing is a possible indication for surgery according to the American Heart Association guidelines so a repeat echo is warranted sooner rather later.
I am glad to hear that your echo is soon. Best wishes while you play the waiting game.

 

[LondonAndy]

I can't comment on the time between echos because I only had one before my surgery, having not been previously diagnosed. I had been through a series of tests for shortness of breath, which came on suddenly a few months before. Although I am overweight, I had always been able to carry on with life normally, knowing that I was too heavy to bungee jump so avoiding that kinda thing (!). But it was like someone flicking on a light switch: 200m from home on my way to the train station, I was suddenly out of breath, and had to rest up for a few minutes before continuing. 200m became my limit for walking anywhere, and it was the echo that was the definitive test. Needless to say with the NHS, these tests had been 2 months or more between each one, and although the ultrasound technician kindly told me what she had found, I still hadn't had a further appointment when, 2 more months later, I had a "cardiac event" and went in to hospital as am emergency.

So my reason for relaying this is that if nothing else happens in the meantime, if you get a sudden onset of shortness of breath that is a clear sign that it is now severe and you should pester your cardiologist for an immediate echo and would be likely to need surgery within six months, if my experience is typical. This may depend on the cause of your stenosis of course. In my case, the surgeon suggested it was because I had been on a combination of insulin injections and a statin for many years, which they now believed cause calcification. (I am still on insulin and a statin 6 years after surgery, and assume this will continue for life).

 

[Cactus52]

Im a moderate stenosis 1.0 area and I do one every 6 months, more for piece of mind than needed. FWIW

 

[daVinci]

Im a moderate stenosis 1.0 area and I do one every 6 months, more for piece of mind than needed. FWIW

Interesting to know. I'm definitely supposed to have echos more than I have been, timely care within the NHS has proved a challenge. I don't doubt my AS is probably severe by now.

Can I ask if you have aortic regurgitation also @Cactus52 ?

I have read in the literature the moderate mixed valve disease should be followed up in line with severe AS, so 6 monthly.

 

[tom in MO]

Im a moderate stenosis 1.0 area and I do one every 6 months, more for piece of mind than needed. FWIW

If you have insurance pay for your echos and live in the US, your insurance company wouldn't pay for it if your doctor and insurance company didn't think there was a need. After surgery, I wanted an echo just for peace of mind and my cardio said insurance likes to wait 12 months since there was no medical problem but he can order one after 6 months. After that first echo post surgery, the cardio said insurance only pays for an echo every 5 years.

 

[Cactus52]

Can I ask if you have aortic regurgitation also @Cactus52 ?

I do not.

 

[coffeelover]

Hi everyone! Interesting info shared...I have echoes done every year since having aortic valve replacement surgery 8 years ago. My insurance does pay for the yearly Cardio echoes. Before AVR surgery , I had Echoes every year. Then once I got to the Severe stage of AS (the last year before surgery) I was having Echoes every 6 months.

 

[Sheenas7]

Hi everyone
I’m due for my yearly echo in Chevy chase Md where my doctor’s office is. I live in Virginia. I postponed from April to June. He says they are ready to treat me safely but if I’m uncomfortable coming I could push it again to August. Chevy Chase is scheduled to re-open May 28. I think it may be safer to come in June where less people will be out. What do you think? Less people in the elevator and parking lot. Undecided.

 

[caro]

I’m torn. I’m concerned that there will be a spike in cases as we open up and we may have to shut down again later in the summer which could effect Aug appt. Some countries are shutting down now for second time due to spikes. Large gatherings have the most risk. I think a doc office could do an echo safely. People seem to be having good experiences at dental appointments. Luckily we face away from the tech during echo. Would ride elevator alone if possible. I’m hoping make an appointment in June for a post op echo because I don’t want to have to wait until Fall or Winter. I’ll wear gloves and a mask.

 

[Protimenow]

I don't have to worry about an echo for a while - mine was done in the hospital early this month. I suspect that most, if not all, medical and dental offices that ARE seeing patients are implementing protocols that protect the staff and the patient. When I got my holter three weeks ago, it had to be put on by a tech who did these things - she wore a mask, and so did I.

Others reported visits to dentists or hygienists who wore masks AND face shields.

I don't use elevators much, but am sure to wear my mask and glasses when I DO use one.

What annoys me most about masks is improper use - I've seen many people who uncover their noses (defeating the purpose of the masks) because 'it's hard to breath through the mask.'

--

I wouldn't be at all surprised by a second wave of the virus coming within weeks, here in the United States. Restrictions are being weakened, and some people who believe the Pandemic is a hoax have been tempting fate by ignoring Social Distancing, or the use of masks -- all it takes is one person with the virus to start the cascade of cases that we saw in the last 8 weeks or so.

Perhaps they won't believe that it's real until someone they know dies from it.

 

[tom in MO]

Hi everyone
I’m due for my yearly echo in Chevy chase Md where my doctor’s office is. I live in Virginia. I postponed from April to June. He says they are ready to treat me safely but if I’m uncomfortable coming I could push it again to August. Chevy Chase is scheduled to re-open May 28. I think it may be safer to come in June where less people will be out. What do you think? Less people in the elevator and parking lot. Undecided.

At my place, they only let 2 people in the elevator. I now take the stairs. You are safe in the parking lot as long as you are 6' away. My place checks everyone upon entry with questions and temperature. They give everyone a mask.

But you don't say why you need the echo. You have a mechanical valve like me. Mine is in the aortic position with no complications and I only need an echo every 5-years. If you have problems such as an aneurysm and that's why you are getting the echo, not getting an echo could be risking death. Covid infection is not as serious as a burst aneurysm.

 

[pellicle]

This means that it will be nearly 3 years from my last echo to my next, which doesn't seem safe to me.

At my last echo (2018) I was sitting on a valve area of 1.1cm, peak gradient 57 and peak velocity 3.8... so the upper end of moderate stenosis, alongside moderate regurgitation also. EF 55%.

What are your thoughts?

well if you feel ok, then its probably OK.

I went for 10 years without any checks at one stage. Nothing happened. But when I felt "things seem wrong" (interesting story there) I went in and found that my valve was deteriorating (as I'd expected to hear) but a surprise guest had arrived, and aneurysm.

So things like this can appear in 10 years, but I'd doubt that 3 will bring many surprises, for if you were at a point where your team was worried about you I'm sure they'd be getting you checked yearly.

My team are still talking 2 years between my studies. Mainly because "nothing is changing". Still its up to me to decide if I want to make that 2, or 3 or ...

But being over 55 now I'll probably make it 2 (and a bit)

 

[Sheenas7]

At my place, they only let 2 people in the elevator. I now take the stairs. You are safe in the parking lot as long as you are 6' away. My place checks everyone upon entry with questions and temperature. They give everyone a mask.

But you don't say why you need the echo. You have a mechanical valve like me. Mine is in the aortic position with no complications and I only need an echo every 5-years. If you have problems such as an aneurysm and that's why you are getting the echo, not getting an echo could be risking death. Covid infection is not as serious as a burst aneurysm.

Hi Tom, and thank you for your comments. My mechanical heart valve is mitral and I don’t have an aneurysm . It is done once a year as annual check up with my cardiologist. I postponed my echo to August . Dr Brix on tv said there was significant virus circulating in that area. It was a difficult decision. Thank you to this wonderful group that helped me learn to do my home monitoring for my INR, i haven’t had to go every time.

 

[daVinci]

well if you feel ok, then its probably OK.

I went for 10 years without any checks at one stage. Nothing happened. But when I felt "things seem wrong" (interesting story there) I went in and found that my valve was deteriorating (as I'd expected to hear) but a surprise guest had arrived, and aneurysm.

So things like this can appear in 10 years, but I'd doubt that 3 will bring many surprises, for if you were at a point where your team was worried about you I'm sure they'd be getting you checked yearly.

My team are still talking 2 years between my studies. Mainly because "nothing is changing". Still its up to me to decide if I want to make that 2, or 3 or ...

When you say you felt 'wrong' what do you mean exactly?

I don't feel quite right r.e. energy levels and my partner says I sleep more than I used to. I don't have severe noticeable symptoms, but do seem to get more breathless than people I know on stairs at pace, have to slow down.

I am on yearly checks... I had an MRI last year which showed worsening of my AR and I was told it's not accurate for stenosis/valve measurements, but is for the aorta and left ventricle. Values were all worse than my previous MRI. Covid is messing up the schedule of things sadly. Literally had my echo planned as we entered lockdown and they're still just doing emergencies apparently.

Not a great position to be in overall. I think I'll be fine but the knowing where I stand element would be very welcome. My echo in two weeks has just been cancelled today AGAIN so will just have to push for a new one.

This is the modern NHS for you. Appointment booking is irritating in normal times, feels impossible with covid.

The collateral damage on people's non-covid healthcare is just untenable. Hope things start opening up more soon.