How long is your replacement aortic valve being followed up with Echocardiograms ?

[seasider18]

I had my aortic valve replaced by a tissue one in May 2012. Initially I had six monthly echocardiograms and then annual ones. After the September 2018 one I questioned the locum cardiologist on the results of the echo and he said that my pulmonary hypertension had increased over the past year from 32 mmHc to 49 mmHc. I had seen him for the past three years and he had not mentioned it as a problem before. My GP had also not been informed of it. The locum said that he would see me again in six months but at that appointment in May he said he could not add anything to last year’s discussion as I had not had another Echo and he would see me again after it.

Not having had an appointment date after this Septembers Echo I phoned to inquire. After the usual hospital runarounds I was eventually surprisingly told that as valves are only expected to last for ten years that they stop doing echocardiograms after seven years and that you are then handed over to a nurse at the Echo Valve Clinic and that I will get an appointment with her next year instead of an Echo. I was also told that since 2013 they have not sent full reports of Echocardiograms to GP’s just a note with any significant changes.

Have any other NHS patients been told this? I have the details of for the Valve Clinic nurse who I will phone tomorrow as she is only there for 2 ½ days a week and will see my GP about it when he returns from holiday. I also see a nephrologist at the hypertension clinic at another hospital who is dubious as to the cause of the pulmonary hypertension or if I indeed have it.

One person doing my Echo suggested that present valves have a life span of 12 years plus. I imagine much depends on how active the recipients are. At 85 and neuropathy I don't run around as I used to.

[Fredders]

Hi, I have yearly echos and have done since I was 16. I am now 61 and have had two AVR ops. After my first op I still had yearly checks and I had my second AVR three years ago and have still had yearly echos, although the ‘consultation’ afterwards consists of a telephone call. Since my ops I have always received a copy of the result letter sent to my GP. Sounds like it could depend on where you live.

Wendy

[seasider18 in reply to Fredders]

Did you have a mechanical valve each time ?

Yes I think it is the penny pinching are we live in..............East Sussex.

[Oscar09 in reply to Fredders]

We’re they tissue valves or mechanical valves? My son has to have valve replacement surgery and we are trying to look into each type of valve and how long they last x

[Fredders in reply to Oscar09]

I had a tissue valve the first time, which unfortunately started to leak after a couple of years, resulting in the second op about 7 years after the first. I chose a mechanical valve the second time as I had had my spleen removed in between heart ops so my immune system is compromised and I didn’t fancy risking a third op.

The new Inspiris valves are supposed to last a lot longer than the normal valves and don’t need warfarin. Plus if it needs replacing they may be able to do it by keyhole surgery. The mechanical valves should last a lifetime but you do have to take warfarin, which can be a problem if you like physical activities like football etc due to the risk of internal bleeding, also have to be careful of your diet and alcohol intake.

Wendy

[MRSLADP]

Keep chasing the answers that you deserve. Something doesn't sound right. Any chance of a new doctor?