No date as yet

[Seaton]

Got a call from the cardiac admissions office today regarding timescale before my AVR surgery (my heart skipped a beat when the hospital number showed up on my phone ... Ha!).

Appears I’ll be waiting a bit longer than they first implied before I get a confirmed surgery date. They’re now hoping to offer me something for the end of July, beginning of August.

My surgeon has quite a few other surgeries lined up before me it seems. Then he’s away on vacation for a few weeks. Which takes us well into summer.

I’m sure the intervening days will fly by.

Admissions said I’d get about a week’s notice before surgery. Which should be more than enough time to pack my toothbrush.

And relax.

 

[Superbob]

"Hurry up and wait" -- old saying in the Army -- Applies to our lives in the Waiting Room. Hang in there, Seaton, and keep us posted.

 

[Gordo60]

Must be frustrating.

I’ve been in the waiting room for around eight years now with the aneurysm. But when it’s time I hope with private health cover surgery date will be more predicable.

 

[Paleowoman]

Oh dear I think not knowing when is stressful in these situations. The good side of them putting the date forward is that they can't think it is urgent though.

 

[charlottekaye]

I wonder if I will even have health insurance when I need my 3rd AVR

 

[tom in MO]

In April they told you it was needed in two months i.e. June. Now they are saying you don't need it until August and are "hoping" they can fit you in. It sounds like they haven't given you a firm date in August either.

I had the same thing as you, BAV with severe stenosis, and after an echo was told to get it done in 6 months. I was asymptomatic when told, but started suffering symptoms soon afterwards. I got it done in 3 months not 6 and afterwards my surgeon said it was ready to fail at any time. As my cardiologist said to motivate me to get it scheduled..."you don't want to suffer the syndrome known as sudden death." You might want to make sure all the doctors are on the same page and you can wait longer.

Good luck.

 

[Seaton]

In April they told you it was needed in two months i.e. June. Now they are saying you don't need it until August and are "hoping" they can fit you in. It sounds like they haven't given you a firm date in August either.

I had the same thing as you, BAV with severe stenosis, and after an echo was told to get it done in 6 months. I was asymptomatic when told, but started suffering symptoms soon afterwards. I got it done in 3 months not 6 and afterwards my surgeon said it was ready to fail at any time. As my cardiologist said to motivate me to get it scheduled..."you don't want to suffer the syndrome known as sudden death." You might want to make sure all the doctors are on the same page and you can wait longer.

Good luck.

@tom in MO
Thanks for the good luck and advice, Tom. Always good to hear such stories from others who’ve been in similar situations. Food for thought, for sure.

I’ll try and contact my cardiac liaison nurse tomorrow and ask her what she thinks and if there is any likelihood I’ll be called sooner due to other surgeries being cancelled.

 

[Duffey]

I hope you get the call sooner rather than later.

 

[Paleowoman]

Do let the cardiac liaison nurse know if you get worsening symptoms too Seaton.

There have been a few forum members here who had their surgery postposed, this is unfortunately not so uncommon in the NHS, usually due to shortage of beds. However, if this happens more than a number of times, or if surgery becomes urgent, don't despair, they will reschedule you quickly or you may find like some of those others, that your surgery will be done in a private hospital, by the same surgeon you are under I hasten to add !

About half the patients on the cardiac ward in the private hospital where I had surgery were NHS patients from St George’s Hospital. The advantage of that for the patient is that they get a private room and bathroom and hotel quality food. Yesterday in the Spectator there was an article in which I found this:

"NHS care is not provided by the state alone. Today, one in every 14 NHS treatments is carried out by private-sector hospitals and clinics”

 

[Seaton]

Do let the cardiac liaison nurse know if you get worsening symptoms too Seaton.

There have been a few forum members here who had their surgery postposed, this is unfortunately not so uncommon in the NHS, usually due to shortage of beds. However, if this happens more than a number of times, or if surgery becomes urgent, don't despair, they will reschedule you quickly or you may find like some of those others, that your surgery will be done in a private hospital, by the same surgeon you are under I hasten to add !

About half the patients on the cardiac ward in the private hospital where I had surgery were NHS patients from St George’s Hospital. The advantage of that for the patient is that they get a private room and bathroom and hotel quality food. Yesterday in the Spectator there was an article in which I found this:

"NHS care is not provided by the state alone. Today, one in every 14 NHS treatments is carried out by private-sector hospitals and clinics”

Thanks Anne – @Paleowoman

I was told part of my delay is due to St Thomas’ Cardiology Department having to take on some of the cardiology caseload of St George’s Hospital Cardiac Unit.

St George’s Cardiology Unit was put in special measures of sorts last year due to above average death rate and other serious issues in their cardiac unit:

There was a culture of "tribalism", one consultant said, and staff told inspectors the cardiac surgical team "had not worked effectively for several years".​

Quite shocking.

See this.

And this.

All things considered, I’m pretty fortunate to be under St Thomas’.

 

[Paleowoman]

It was even worse that that - there was a “toxic feud” and “dark force” between the cardiac surgeons: https://www.theguardian.com/society...cused-of-toxic-feud-that-put-patients-at-risk

I was not at all surprised to read of this. Not only was there this "toxic feud", “tribalism” and “dark force" between rival camps of surgeons (that wording was all used in an official NHS investigation/review into the increased mortality rates at St George's), but cardiologists were also involved taking sides. It all fell into place for me with my original referral in 2013 by my previous cardiologist and what he said about some of the surgeons, he spoke most unprofessionally about two of them in quite an unbelievable way (I changed to my current cardiologist at that point)….but not unbelievable once these problems at St George’s came to light last year - the ‘feud’ had been ongoing for several years. The surgeon who did my AVR was extremely arrogant and patronising and didn’t answer my questions (as I‘ve mentioned on forum some time ago) and made mistakes in her reports, including in the Operation Note which took me a year to get corrected. She was suspended last August by St George’s but took them to the High Court about that and got reinstated. There is now the current investigation which I am most interested in. The other consultants I am under are all quite shocked at way the cardiac surgeons at St George’s have been/are behaving - I’m not in view of the surgeon who did my AVR.

My big mistake was not asking for second opinion when I had that surgical referral to that St George’s surgeon. At the time, when I told my endocrinologist of how she had behaved at the consultation, he said I should ask for a referral to the Royal Brompton. I should have followed his advice but thought it would be best to stay locally, certainly best for my DH and DS as it would have been problematic for DH to visit me in London (DS has Asperger’s syndrome).

Anyway @Seaton you are right, you are fortunate to be under St Thomas’ - but do let them know if your symptoms wosen.

 

[Agian]

Anne, I remember you telling us about your surgeon. Wow, she got suspended.

All it takes is a couple of toxic people and it all goes to...

 

[Paleowoman]

Yeah, she and another of the cardiac surgeons got suspended by the hospital presumably due to this "toxic feud". She took the hospital to the High Court to get reinstated which is when she was named in the press - the other surgeon didn't go to court so wasn't named. None of the cardiac surgeons at St George's is allowed to do complex cardiac surgery now pending an inquiry into the higher cardiac mortality rates at the hospital, hence the complex cases being sent to other hospitals like St Thomas's where Seaton is going ot have surgery.

Anne, I remember you telling us about your surgeon. Wow, she got suspended.

All it takes is a couple of toxic people and it all goes to...

 

[vitdoc]

Way back in the day in 1977 I was scheduled for a aortic valve repair in January of 1978. I was in medical training myself and in Sept of 77 it was deemed necessary for repair to be done before my heart had irreversible damage. I had a high gradient and my EKG showed changes for the first time of stress on the muscle which would have caused fibrosis and permanent heart damage. I was relatively asymptomatic. At age 29 I was active and played considerable amounts of basketball. While playing one evening in early October 77 I fainted and woke up quickly. I actually bicycled home and decided that I would quit playing basketball until after the surgery. I happened to run into my cardiologist a few days later in the hospital and casually mentioned to him about my fainting. He freaked out and he insisted I move the surgery up three months. So two weeks later I had my first valve repair.
Sudden death from cardiac rhythm problems is a well know issue with severe aortic stenosis.
So if the stenosis is bad there is really no reason to wait too long. The first symptom can be sudden death.

 

[Seaton]

Way back in the day in 1977 I was scheduled for a aortic valve repair in January of 1978. I was in medical training myself and in Sept of 77 it was deemed necessary for repair to be done before my heart had irreversible damage. I had a high gradient and my EKG showed changes for the first time of stress on the muscle which would have caused fibrosis and permanent heart damage. I was relatively asymptomatic. At age 29 I was active and played considerable amounts of basketball. While playing one evening in early October 77 I fainted and woke up quickly. I actually bicycled home and decided that I would quit playing basketball until after the surgery. I happened to run into my cardiologist a few days later in the hospital and casually mentioned to him about my fainting. He freaked out and he insisted I move the surgery up three months. So two weeks later I had my first valve repair.
Sudden death from cardiac rhythm problems is a well know issue with severe aortic stenosis.
So if the stenosis is bad there is really no reason to wait too long. The first symptom can be sudden death.

Good points @vitdoc. Thanks for the information and prompt.

I will call admissions again Monday and discuss.

There is a possibility I could be added to their ‘two day notice’ list. Apparently there is a slot they leave open each week for any sudden critical case that may need immediate attention. And if a critical case doesn’t arise they offer it at short notice to someone on the waiting list who has agreed to a two day notification of surgery if a slot becomes available.

There’s no guarantee those on the two day list will be called in early, but it’s a possibility and would mean I wouldn’t have to wait probably two more months or so.

Having said that, suddenly being told I am to have open heart surgery in two days could be quite a brain shift And wouldn’t leave me much time to organise things.

But then again, I suppose you could say I’ve been preparing for this in one way or another for over four years.

Thanks again for your wise words and input.

 

[trinitymcdermott]

Must be frustrating.

I’ve been in the waiting room for around eight years now with the aneurysm. But when it’s time I hope with private health cover surgery date will be more predicable.

What kind of aneurysm? Aortic artery I assume? That wait can be scary. In the US they repair those game they are about 5.5cm or if there are painful abdominal symptoms.

 

[tom in MO]

Good points @vitdoc. Thanks for the information and prompt.

I will call admissions again Monday and discuss.

There is a possibility I could be added to their ‘two day notice’ list. Apparently there is a slot they leave open each week for any sudden critical case that may need immediate attention. And if a critical case doesn’t arise they offer it at short notice to someone on the waiting list who has agreed to a two day notification of surgery if a slot becomes available.

There’s no guarantee those on the two day list will be called in early, but it’s a possibility and would mean I wouldn’t have to wait probably two more months or so.

Having said that, suddenly being told I am to have open heart surgery in two days could be quite a brain shift And wouldn’t leave me much time to organise things.

But then again, I suppose you could say I’ve been preparing for this in one way or another for over four years.

Thanks again for your wise words and input.

The "syndrome known as sudden death" is a permanent "brain shift" and afterwards there's no need to "organise things." Years ago I read a study using autopsies to determine those who died of unknown BAV disease. The ages were ~20-80 with the median being ~55.

 

[Sassy20]

I wonder if I will even have health insurance when I need my 3rd AVR

Can I ask have you had 2 mechanical aortic valves?