My mum due to have aortic valve replacement. Said health was good and TAVI only for those poor health not enough data on it. Consultant asked for an echogram as thought heart was enlarged. She has a heart murmur which the person doing scan said does means her heart is enlarged. Now been moved to another consultant and different hospital for TAVI when was as at a leading hospital for heart now a local hospital. Not explained to us why one option best for her and now a change to a TAVI. All I have in my head now is TAVI for those seriously ill and not enough data on it cause they have sadly died of other things. I feel angry and scared at the mo. Want to ask questions but all on hold cause of COVID. Anyone suggest literature for me to read or got experience of a TAVI? Sorry for long post
TAVI : My mum due to have aortic valve... - British Heart Fou...
TAVI
start with this:
This is totally anecdotal and based on my experience and my aunts reported experience. This is how it was explained to me (PVR) (Birmingham, QE) and my Aunt (AVR- assessed for TAVI) (Barts London).
Data on long term outcomes of trans-catheter valve replacemnets (so including TAVI) is still of a relatively poor standard. We just have not been doing them long enough to know how they hold up long term against traditional valve replacements. The way my consultant put it me and how my aunts consultant put it to her- at present they believe the life span of trans-catheter valves is in fact shorter. If, therefore, you are generally fit and well (heart condition aside) and the potentially expect you to outlive the transcatheter replacement then traditional methods are preferred.
I can expand on this in relation to my case: I was 20. A young fit woman (heart condition aside). Changing my valve by catheter would have been a temporary patch and would have meant heart surgery further down the line (possibly within 5 years). It would not really have fixed much. Times when transcatheter would be considered for me would be any situation where there were concerns about a General Anaethetic. The example given to me: If I had an accidental pregenancy with my failing valve and a combination of the preganancy and valve were damaging my heart, they would intervene and do a trans-catheter vale replacement. This would protect my heart, preserve the pregnency and allow actual surgery to be delayed until after delivery. Other examples given were (non-cardiac) co-morbidites conditions where the risk of not surviving a GA were considered high- eg: Pulmonary Hypertension (a serious lung disease).
The TAVI has excellent short-term results (arguably better than traditional) and is a well tested proceedure. The results being particularly good in the more "high-risk" groups who were previously considered in-eligible for treatment. However, there is a reservation about using it on people who are otherwise well as its long term (5 years +) results are not so well known.
Please do not think that the "not enough data" comment has anything particularly to do with people dying of others things necessarily prematurely. It maybe part the reason we struggle to collect longer term data; but the collection of that data is affected by the catch 22- reluctance to use it on people expected to do well with traditional methods (due to lack of data) means disproportionate number of TAVI Candidates considered "high risk" who are either already elderly or have a significant underlying health condition and as such do not live long enough for us to collect the data in the first place and thus the cycle continues with inability to collect data.
I can not tell you why they have changed the choice of preferred method for your mum. That is a question only your doctors can answer that question - but I can say both ways have really good results.
Thank you so much for taking the time to respond to me, this is really helpful. I just hope we get an appointment soon and that I can go with her to ask the questions that I have. I need to go in with an open mind as at the moment I am stuck on what was said in our one and only appointment with the consultant. Given that she is 76 and got a murmur if we had been told the facts on the 2 options we had and not more bias, my opinion, for the AVR as she is in good health. Obviously COVID has not helped in we have not had a follow up since echogram showed heart enlarged so we have just had a letter saying TAVI, change of consultant and hospital. Thank you again.
I had my aeortic valve replaced by TAVI by Dr. Ratib in Stoke, November 2019. This operation could only be done if I was in good enough health. Bad veins would have meant open heart. It was a miracle, 30 minutes, no pain, wide awake talking to the doctor. The effect was almost instantaneous. This procedure is incredible, the doctor in my mind is a Saint. Please don't worry it is a very safe procedure.
Dear Kat
I had an AVR 2nd May. I went "private" as I was in severe doubt about surviving until NHS hospitals opened up after Corona .
The consultant and the surgeon mulled over TAVi or OH. And really hoped I would decide for them.
There is insufficient data on TAVi .
The type of valve, in particular the material used, again insufficient data available.
So my two experts eventually opted for OH. After the op, they commented it was the right decision as my valve and surrounds were in a bad state.
The surgeons did explain that, if we went TAVI then different staff were required.
As a private patient, costs were an issue. The TAVi costs a lot more than the OH, despite the longer recovery period needed in hospital.
If the TAVi fails then OH is then an option.
Best wishes to you and to your Mum
Colin
Hi Colin. Thank you for taking the time to respond. I am being silly and had it in my head we would be going OH therefore decision taken off us. However now it will be a case of "what if". The Consultant said at the same time they would sort her AF as well so I guess that won't now with a TAVI. Too much was said in that initial appointment for me now to start afresh and forget. I need to get all my questions down so we are ready for the appointment, when/if we get it soon which I hope we do.
Changing subject I was surprised she was not advised to shield as well.
So glad the right decision was made for you and good luck with your recovery. Take care.
I dont think you are being silly.
Just doing the best you can for your Mum.
When the expected date is known then it would make sense for Mum to shield. During the hospital stay and for a while after then "stay at home" would be expected. I wasnt even allowed out of my hospital room. But the pandemic was at its height in London when I went to London for the Op. And of course I had huge anaesthetics whereas TAVi is minimal.
Advances in heart care are being made so fast that the medics dont have much in the way of precedents.
Colin
What is TAVI please
If she is unhappy she needs to get a referral to another consultant at a specialist hospital. I think Tavi is not just by illness but by age too. My son is a social worker and has clients with tavis. They were not that unwell at the time. Less invasive. Good luck
Thank you so mu
Hello Kate, I recommend listening to a lecture about TAVI. I've been looking for it on my tablet and I can hear the lecture and see the diagrams but not view the speakers.
Search: Oxford University surgical lectures: keyhole implantation of a new aortic valve (TAVI).
I was considered for a TAVI procedure at Oxford but then the cardiologist reconsidered and I had a new aortic valve and a triple bypass instead: 2 yrs ago this week.
Margah
Brilliant I will have a look for it. Thank you so much.
Kat just read your posts again. I was also 76 (like your mother) when being considered for surgery: described as 'fit and active'. I was 77 by the time I had the operation.
Rod Stewart had a TAVI and he is fit but money gets you what you want and he was back on stage in no time. I asked about about one eight years ago when I had my aortic valve replaced when I was 78 and was told that I was to fit to have that.
If it was good enough for Mick Jagger probably good option for most folk???
Hi, just came across this page & thought I would share with you that my mum had her TAVI done last Thursday at London Bridge , St Thomas’s are doing all their heart ops there at the moment because of COVID, she is 95! She has Professor Simon Redwood do the TAVI, She was awake during the whole procedure and watched it on the theatre screen! I was worried just like you... I really thought it would be horrific for her to go through anything like this at 95 years old... but she has bounced back, still tired at the moment but it’s not even been a week yet. Good luck with your mum xPhoto was first day back home with flowers from us.
I had my TAVI at New Cross, Wolverhampton on 22/04/21. I am 60 years old and have been an Insulin dependent diabetic for 30 years. I suffer with Diabetic Perhipheral and Autonomic Neuropathy and was concerned about OH and possible infection while recovering. I was fully involved in the decision making with the team at New Cross. An MRI made the final choice a TAVI. The procedure went well but unfortunately a problem with a lack of blood supply to my left leg resulted in an extended procedure time from 2 to 6 and half hours. I was sitting up on the side of my bed on the night and discharged on the following day. From what I read up on the subject, TAVI is quickly becoming the go to option for low risk patients with long term results improving as age considerations and restrictions lower.
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