In the waiting room activities...

[Cactus52]

Hey all:

I went from the diagnosis of 1.3cm2 to 1.0cm2 in a years time. I have always been pretty active and now I am almost afraid of doing anything. I have curtailed my workouts way back along with being a little hesitant to enter into interpersonal physical activity. My Doc says I'm fine and no restrictions, but if I feel light headed just slow down. But I feel like I could hurt something and thats holding me back. What are your experiences? Is this a normal fear and reaction?

Now a twist, just so I don't have to start a new thread......

I am a airline pilot and my diagnosis came at my yearly flight physical. Now per the FAA I have to monitor it once a year. Luckily My FAA doc is a cardiologist and the one the FAA goes to for answers and recommendations. The rub comes in is two fold. He primarily does flight physicals and refers to his partners for procedures and analysis then he makes a recommendation. Also he is in Phoenix and I live in Atlanta. My question here is a year good enough to check my condition or should I find a local cardiac surgeon and develop a relationship and have my heart echo'ed more often?

Thanks

Cactus52

 

[Alchemist]

Hi Cactus

I'm pleased you've started this thread as I've been pondering about writing about my own echo results which I received last week and I hope I can help you.

I thought I'd be clever, save on the private medical fees of my Cardiologist, besides I was 'feeling fine' wasn't I? I deferred my 6th month check up and so time flew on and it stretched out to a whole year.

My Cardio was a tad surprised that he had not seen me for so long and to cut a long story short implied I'd been putting my head in the proverbial...

Last year's AVA was 0.95cm2 with a BSA indexed figure of 0.59cm2/m2 however it now reads 0.7cm2 with an indexed value are of 0.43cm2/m2 body surface area.

To quote 'All measurements apart from the peak velocity are now in the severe range' So now I am perched on the edge of my waiting room chair all because I am still asymptomatic and my peak velocity measured 3.9m/sec with the cut off for severe stenosis being >4.0m/sec.

What I'm trying to say is: Yes, do go to have a more frequent,echos,

I'm using a Cardiologist who is also a consultant radiologist because my BAV was a tricky one to get a reading from, I've stuck with him over two and a half years. We always use the same machine for consistency - which makes sense when you are dealing with these minute figures.

I'm going again in 6 months but he envisages that I will present symptoms before then.

I've started looking at valves and will talk about hospitals and surgeons with his staff over the next few months.

May I suggest that you start that relationship with a local cardiac surgeon now, be prepared to shop around which I imagine in your private health system is much easier than our NHS.

Good Luck

Alchemy

 

[Paleowoman]

Wow Alchemist - I'm amazed your cardiologist is waiting another 6 months for your next echo. I was referred for surgery when my AVA was 0.9cm2 and I had abslutley no symptoms. My echos too were done by a consultant cardiologist. (I'm actually still having six monthly echos from a consultant cardiolgist as the gradient across the replacement valve is climbing and the AVA is 1cm2).

 

[Nocturne]

Remember - your lifespan and quality of life come a distant second behind the covering of the butt of any doc you may be seeing. This is important to realize. In the states, this means that your doc will follow the guidelines presented by the AHA and whatever governing body they may otherwise be beholden to, and after that — well, you’re on your own, chumpy. No doc will stick their neck out to offer you reasonably better care if the governing bodies covering their a**es don’t direct them to do so. They’d rather smile and tell you “ya gonna be FINE!” and send you home to die, and then say “It musta been genetic!” and point out how they followed the AHA guidelines WRT your case. Tough luck, chump. Sucks to be you!

 

[Paleowoman]

Remember - your lifespan and quality of life come a distant second behind the covering of the butt of any doc you may be seeing. This is important to realize. In the states, this means that your doc will follow the guidelines presented by the AHA and whatever governing body they may otherwise be beholden to, and after that

Shortly after my surgery, when I complained to my GP that I thought my AVR had been done too early and I told him that the Americans on this forum were invariably only referred for surgery when they had quite overt symptoms, my GP told me that was because American doctors are more afraid of litigation than English ones. He told me that once a doctor “takes action” in America that’s when they become open to litigation. I remember saying on forum what my GP had told me and that forum members seemed genuinely dismayed this could happen….but I think you’re right Nocturne. Litigation does happen here in the UK but it’s more likely when a doctor has committed gross professional misconduct which is very tricky to prove.

Very recently I discovered here in the UK that some hospitals have ‘Multidisciplinary Teams’ that a patient is referred to when heart surgery is suggested. This team consists not only of a cardiac surgeon but also cardiologists, physiologists and others, it’s aim is to be patient centred and also means that decisions are not left to the one person (cardiac surgeon) but discussed by several. Here’s an article about it from Heart Valve Voice: http://heartvalvevoice.com/index.php/heart-valve-disease/treatment/multidisciplinary-team

 

[Northernlights]

While I agree that Americans tend to be more litigious, and obviously following the guidelines can be used by doctors as a defence, nevertheless it is actually a very good defence since the primary purpose of guidelines is to disseminate knowledge and best practice, and thus protect the patient - with the aim actually of promoting the patients' survival and quality of life. I recommend anyone in the waiting room to read the relevant sections of the ACC/ AHA guidelines on valvular disease for their particular valve problem ( 2014, with a focussed update in 2017) and indeed the European ESC guidelines ( 2012 with again an update in 2017). They are all available on the web, easily googled and can be downloaded. They represent a very impressive body of work, and I think anyone who reads them will end up with a greater understanding of the problem. Of course they don't cover every possibility but they are also a useful starting- point for discussion with your cardiologist / surgeon if your treatment plan doesn't fall within the guidelines and you want to know why.

When AS is severe (peak velocity 4 or more) AHA recommend echo follow-up at 6 months to a year, with the patient told to report any symptoms straight away. They also say an exercise test is reasonable in asymptomatic patients with severe AS ( not symptomatic ones) to check. Moderate AS (PV3-3.9 ) echo every 1-2 years, and mild AS (PV 2-2.9) echo every 3-5 years.


In fact both the US and the European guidelines recommend normally waiting for symptoms in severe AS, as does the NHS - Palaeowoman's surgery was private, so may have been different. Severe is defined as mean gradient 40 or over, or peak velocity 4 or over.

Surgery for asymptomatic severe AS is recommended if the patient needs other cardiac surgery anyway. Both guidelines also recommend it if the patient has a reduced EF due to AS, symptoms on an exercise test due to AS, or pulmonary hypertension or very high BNP levels due to AS (ESC only). AHA also say it's reasonable in asymptomatic patients with peak velocity of 5 or over at low surgical risk, and 'may be considered' in patients with severe AS and rapid disease progression at low surgical risk - perhaps Palaeowoman's position? (Low-flow AS with a low EF and consequent low- gradient is rather different and I haven't covered it here)

The rationale is that survival in asymptomatic AS is basically the same as the general population. Therefore the risk of intervention is not justified. However, with symptoms the situation changes:

AHA/ACC : 'However, once even mild symptoms caused by severe AS are present, outcomes are extremely poor unless outflow obstruction is relieved. Typical initial symptoms are dyspnea on exertion or decreased exercise tolerance. The classical symptoms of syncope, angina, and HF are late manifestations of disease, most often seen in patients in whom early symptom onset was not recognized and intervention was inappropriately delayed'. Surgery should be prompt when symptoms appear ( i.e. this is not the best time to be thinking 'which valve? ' or 'which hospital?').

So it's basically a case of generally wait until symptoms begin and then don't put it off. The difficulty lies where symptoms are insidious and not recognised and reported by the patient, or acted on by the doctor ( or patient). For anyone with severe AS who is asymptomatic I certainly think it's worth asking for an exercise test just to check, and sorting out your plan for surgery so you are ready.

It's important to remember this is just for AS - all the varieties of valve disease have different criteria for surgery. Anyway, do read the guidelines for yourselves.

 

[Nocturne]

Thanks. Believe me, it all makes me feel pretty irritable given that most American docs seem to have their heads rammed as far up their butts as possible when it comes to awareness, let alone treatment, of cartoonishly high Lp(a) levels.

 

[Paleowoman]

Hi Northernlights - In the UK it’s exactly the same medical and surgical guidelines for both the NHS and private, and same cardiologists, same surgeons, the only difference is that it’s quicker to referral if you go private, you don’t have to wait weeks or months for referral, and in hospital you get a private room and good food, if you can eat that is ! My mean gradient was 42 and peak 68 at referral - I then had surgery two months later. No symptoms though. The guidelines then in Europe, nearly four years ago, were to do surgery when gradients were severe even if no symptoms…at least that’s what I read, and the American guidelines were different. I had actually asked for surgery to be deferred for longer. Perhaps the reason was the risk of "rapid disease progression" - certainly I had low surgical risk.

 

[Northernlights]

Dear Palaeowoman
The 2012 ESC guidelines which preceded the 2017 update are still on the web. They say:

'Management of asymptomatic severe AS remains a matter of controversy. Recent studies do not provide convincing data to support the general recommendation of early AVR, even in patients with asymptomatic very severe AS. The decision to operate on asymptomatic patients requires careful weighing of the benefits against the risks.'

They then give the same provisos as I mentioned in my previous post ( low EF / etc)
Finally:

' Surgery may also be considered in patients at low operative risk with normal exercise performance but one of the following:
High BNP
Increase of gradient by 20mg on exercise test
excessive LV hypertrophy without history of hypertension. [ this latter was removed in the 2017 update]
In patients without the preceding predictive factors, watchful waiting appears safe as early surgery is unlikely to be beneficial.'

Re private / nhs I just meant that consultants operating privately rather in their nhs role might be operating under less constraints of waiting list etc, and so actually be more able to operate earlier if they felt it desirable. But the European guidelines in 2012, as you can see, were basically the same as in 2017 and recommend waiting for symptoms. Obviously I don't know whether you fitted in any of the categories here, but since you clearly had severe AS and were low-risk I assume your cardiologist felt it was better for you not to wait.

The only point I wanted to make was that the European ESC guidelines and general NHS practice is to wait for symptoms and I think always have been, like the US guidelines, though of course that doesn't mean it happens in every case.
I can see it's frustrating when you wanted to wait. I had the opposite - I waited longer than I would have liked, though it did enable me to change my mind!

Nocturne,
I recognise your Lpa frustrates you, but letting off steam by rubbishing the valvular guidelines to two nervous new valve posters doesn't seem to me to be terribly helpful or exactly relevant? What about just keeping that to an Lpa thread?

 

[Alchemist]

Hello again

Thank you to both Paleowoman and Northernlights for your informed contributions to this thread.

Northernlight's quote:

AHA/ACC : 'However, once even mild symptoms caused by severe AS are present, outcomes are extremely poor unless outflow obstruction is relieved. Typical initial symptoms are dyspnea on exertion or decreased exercise tolerance. The classical symptoms of syncope, angina, and HF are late manifestations of disease, most often seen in patients in whom early symptom onset was not recognized and intervention was inappropriately delayed'.

This points exactly to my personal dilemma,

I'm not a hypochondriac, perhaps an ostrich like denial is my real problem. I do understand the laissez faire approach works statistically however when the most important symptoms. like decreased exercise tolerance, tend to creep up on one insidiously, admitting this is happening feels like waving down an ambulance on a one way trip? Perhaps a stress test will reveal all. I certainly don't want to be rushed into AVR and after 2 years in the Waiting Room, I would like the time to think about which hospital, surgeon and valve.

Indeed this may be the most reassuring course of action for Cactus 52, to red or green light his Waiting Room Activities?

 

[epstns]

Cactus - To return to your original question about whether an annual echo is enough or if it should be done more frequently, I can only speak from my own experience. Initially (for the first 9 years or so) we watched my valve's progress with an annual echo along with a mid-year office consult. I have a wonderful relationship with my cardio. We discuss all things related to my heart and the impact my valve disease has upon my heart and my life. We discuss what I do, how I feel and what is next. Always. I also keep an exercise diary, tracking what I do, HR measurements and how I feel when I do it for each visit to the gym. I use this information in my updates with my cardio. I was not under any restrictions pre-op, other than having to switch from lifting moderately heavy weights (150 lbs, and I weigh about 155-160) to lifting light weights (15 lbs) at much higher reps. I find I can maintain tone and definition with 30 reps at 15 lbs. I just don't get "big." (At 70 years old, who wants to get big?)

IIRC, once my valve got to 1.0 cm2, we switched to echo's every 6 months. After watching my valve for nearly 10 years, we were getting close. Finally, after almost 11 years of waiting, we acted. I told my cardio "I'm tired of being tired." That was my only notable symptom. I could still complete my gym routine with no issues. Afterward, my wife said that she noticed the difference, but left it up to me and the cardio to decide when to operate.

If you can work it out, I would vote that you find a cardiologist local to your home base. A doctor who has significant experience in dealing with younger (you're not in your 80's, are you?), more active patients. To me, this is important because most aortic valve patients are elderly and not very active. You want more from your life, and you need a doctor with the right experience to make that happen.

 

[epstns]

Oh, I also forgot to mention that when it was time to select surgeons and hospitals, my cardio said "They do valve surgery here, but you're not going to have yours done here." He went on to recommend two surgeons at another, even more highly regarded local teaching hospital. I also received a recommendation from members on this board, and it was ultimately the surgeon recommended here that I chose. He is a top-rated surgeon at a top-rated hospital, and I am lucky that they are in my home town.