first post: want to wait little longer!

[kernow61]

Hi,
I,m new to forum and am expecting AVR surgery sooner rather than later.
I have been "in the waiting room" since March 2012.
i have been putting off surgery till the last minute.

Here are my results history:

March 2012. first test.

Diagnosed with bicupsid aortic valve with severe regurgitation
Aortic gradient 20-25 mmHg
Aortic root up to 3.9 cm
Ascending aorta 3.8 cm
Lvd 6.4
Lvs 4.3
Ef 60-65%
Calcium score 0
.....................................................................................

March 2013

Lvd 6.9
Lds 4.9
Ef 60-65%
.......................................................................................

Dec 2014

Lvd 7.1
Lvs 4.7 (gone down! ! )
Ef 60-65%


I am 53 yrs old, weigh 145lb.
I run 4-5 mile most days at a average pace of 7min 30 sec per mile.
i swim 2.5 k two or three times a week.
Do moderate weight training 3 times a week (1hr) and surf frequently.
I do not have any noticable symptoms.

My condition was picked up by stethascope (heart murmer) and ecg for unrelated condition.
I had reluctantly accepted i would need surgery if and when i reached the thresholds of lvd 7.5 .lvs 5.5 or ef < 55% and was happy to hav 6 monthly echo until then.

At a consultation last Nov with a different consultant (same team/hospital) i was told that due to my level of fitness and preserved ejection fraction and on March2013 figures i could possibly put off surgery for another year or two as my quality of life was still greater than risks of surgery and possible complications associated with surgery.

The last letter from a consultant (my regular one) said the gradual progression of left ventricular dilation will eventually compromise the ejection fraction and at my next consultation ( IN TWO WEEKS) he would be recommending an invasive coronary angiogram and referral to surgeon for surgery.
He also informed me that new EU guidelines suggest that in asymptomatic severe aortic regugitation with end systolic diameter above 5.5cm,the probality of fatality or symptomatic left ventricle failure is reported to be19% per year.

I would like to put off surgery until October, with maybe one more echo in June to confirm last measurements
( It seems odd that my lvs had gone down from 4.9 to 4.7.......how accurate are these tests?)

My reasons for this are first that i suffer from hayfever from May to end of August and wouldn't like to be suffering during recovery.
Also i would like to visit my parents in April as they haven't seen their 5yr old ( only) granson for over a year (due to distance and work they only see him once a year) and i fear it may be the last time my aged father will see him.
...and i have planned a family holiday overseas in August, the first overseas holiday in 5 yrs and first trip abroad for my son.
Plus my son would be just that little bit older and more understanding of the situation when i'm in recovery. He's a typical ' bit of a handful ' 5 yr old boy.

I think my consultant is going to be pushy, he was keen on surgery from the first moment and it was only because of the info i got online he has relented so far.
Not looking forward to this meeting at all

Your views would be welcomed

Keith

 

[kernow61]

Hi again,

Just read online that
".... in asymptomatic patients with normal systolic function ( ejection fraction greater than 55%) with severe AR and significant LV dilation (end diastolic greater than70mm or end systolic greater than50mm) for whom the risk of developing symptoms or LV dysfunction (ejection fraction 50% or less) ranges between 10-20% per year it is reasonable to peform serial Echocardiograms as frequently as every 4-6 months.
There may be variability in any given measurement ofLV dimension or ejection fraction.,therefore it is recommended that 2 consecutive measurements be obtained before one proceeds with a decision to recommend surgery".

Keith

 

[Tdot]

Hi Keith

An MRI would give you a more accurate result, have you had one? Echoes are accurate to a few mm. I be had variation in my lvd measurements from echos. One year was 54, then 51 year after. This year I had two echos weeks apart; the first showed 58 and second 51. There was also variation in the root measurement so I'm having an MRI next week to confirm things.

I think the key is that there is a trend that the lvd is increasing over time. Have you had second, third opinions?

 

[AZ Don]

Hi,
I would like to put off surgery until October, with maybe one more echo in June to confirm last measurements
( It seems odd that my lvs had gone down from 4.9 to 4.7.......how accurate are these tests?)

My reasons for this are first that i suffer from hayfever from May to end of August and wouldn't like to be suffering during recovery.
Also i would like to visit my parents in April as they haven't seen their 5yr old ( only) granson for over a year (due to distance and work they only see him once a year) and i fear it may be the last time my aged father will see him.
...and i have planned a family holiday overseas in August, the first overseas holiday in 5 yrs and first trip abroad for my son.
Plus my son would be just that little bit older and more understanding of the situation when i'm in recovery. He's a typical ' bit of a handful ' 5 yr old boy.

I think my consultant is going to be pushy, he was keen on surgery from the first moment and it was only because of the info i got online he has relented so far.
Not looking forward to this meeting at all
Keith

Regarding the timing, it's January now, if you have your surgery in February you will likely be doing quite well by April. People travel 1 week after surgery, surely you will be able to travel 2 months and 6 months later. Coughing and especially sneezing do hurt after surgery but by 2-3 months it's not much different than before surgery.

The accuracy of an echo is highly dependent on operator skill and the results can vary.

It is important to be informed and it sounds like you are. If you think your Dr is deviating from the established guidelines it's a fair question to ask why. It may also be worthwhile to get a 2nd opinion.

 

[kernow61]

Hi,thanks for replies
I had an mri when they discovered the murmur to rule out aortic dissection,but they dont like doing them in NHS UK for routine stuff...probably due to cost! !
I can only ask!
Its usualy 3 months from referral to surgery here with an invasive angiogram in this period. This would take my surgery to May, start of grass and tree pollen season.
Wouldn't an mri show the things the surgeon is looking for in the invasive angiogram, and also more accurate measurements?
Also because i dont have any symptoms would a physical stress test show any deteriation or give a better indication for surgery.

Keith

 

[VegasBAV]

I'm not a doctor, but it sounds to me like you need surgery soon. Things like visiting the parents and vacations can be pushed up or back a few months. Echos are not exact, variations are not uncommon, the change from 4.9 to 4.7 doesn't mean much at all. Your left ventricle is getting bigger. That's not good. It's better to have surgery before your heart continues to enlarge. I didn't have symptoms, my lv was not as enlarged as yours, and I too was once in the phase of "reading everything I could off the internet and then questioning the doctors about whether I met the criteria I found on the internet." Ultimately though, after three doctors told me I needed surgery promptly, I just trusted them and had the surgery, and I'm glad I did. If you have the surgery soon there's no reason why you can't visit your dad and take that vacation in August. Good luck.

 

[AZ Don]

Wouldn't an mri show the things the surgeon is looking for in the invasive angiogram, and also more accurate measurements?

Well the mri would definitely be more accurate than the echo, but as I understand it, the invasive angiogram can provide some additional information, and they get even more information when they are actually doing surgery and can see things directly. Although I had just had a CT scan, I had an angiogram. It is pretty routine to have it done prior to surgery.

3 months to wait is longer than I was thinking when you said asap. All I can suggest is to get another opinion and it if agrees with the first, then you should make your other plans around the surgery. Many people are back to normal functioning within a month or two. I was. Re. the allergy, if you have to have the surgery during allergy season you will definitely want to do what you can to limit your exposure to allergens and take whatever medication helps. Sneezing and to a lesser extent coughing will be painful the first month or two, but if you are comparing this against possible harm to your heart, pain is temporary and there are effective meds that help.

 

[Mentu]

Hi, Keith, I shared some of your same concerns with respect to pollen allergies. At the time my AVR was scheduled, however, I was feel very ill and my surgeon said we could not wait. As it turned out, in the two years after the valve replacement, my pollen allergies all but disappeared. I have no idea how many other people may have experienced this but it was very surprising. Prior to surgery, I took antihistamine once and sometimes twice a day. In my first year afterwords, I only used 12 tablets. Since then, I've noticed that the allergies have slowly returned but they are never as bad as they could be before the AVR.

As for the general topic of timing, one must keep in mind that as the valve deteriorates, the stresses alter the heart itself causing the ventricle walls to thicken and stiffen as the left ventricle attempts to push blood through the narrowing valve orifice. The longer this process continues, the more damage is done. Up to a point, the heart can recover after surgery but if the changes in the heart itself are too advanced, a complete recovery cannot always be expected. This results in diastolic dysfunction. The thicker stiffer ventricle walls have no problem ejecting blood through the new valve but they cannot fully relax and allow the ventricle to fill properly. The result is somewhat reduced blood flow. In my own case, the diastolic dysfunction has improved over the last four years and, hopefully, will continue to do so but the pace at which this happens slows with time. I would suggest that you ask your doctors very directly about both the safety of waiting (with respect to the valve function) and the effect of waiting on the increasing damage to the heart itself.

Larry

 

[T in YVR]

Mentu is right re: timing - If it were me, you could not get me to the OR fast enough....your LVD has steadily increased to 71. That's borderline severe. Sure, echos can have slight variations. But you've had at least 3 of them and they all are trending in one direction: up. You reach a point of doing irreparable harm to your heart. When you're talking about the quality of your life long term (and possibly the length of it!), family visits and hayfever can quickly start to take a back seat. Waiting a while to accommodate things that go in someone's life, as well as ensuring you don't operate too soon etc., are important considerations. But in my opinion it sounds like you are pushing the envelope too far.
Tony

 

[Duffey]

I'd have the angiogram and see what the results are.

 

[epstns]

Keith, You've received a lot of good information here, and I cannot add much to it. Your situation is a lot like mine in terms of age at diagnosis, stature, physical conditioning, etc. The main difference is that I had aortic stenosis leading to a constricted valve, while yours leaks backward instead.

I was able to wait until age 63 for surgery because my heart statistics were grossly stable for 9+ years. Once deterioration set in, we went soon to surgery. This would be my advice to you, as it seems that your measurements are just beginning to slip. Get it fixed as soon as they will do it for you, and don't worry about the season. I had mine done in February, when my allergies were dormant, but for other reasons I had a nasty cough for 4 to 6 weeks after surgery. You can't control it all, and much of it is not worth controlling. If you do have to cough or sneeze, you will soon learn how to cope with it. It is not (to me) worth delaying the benefits of surgery to try to avoid allergies.

You're young. You will bounce back far more quickly than many of us who were older. You can do it if you try.

 

[tom in MO]

Keith, in your NHS, your doctor is trained to save money, so they won't be recommending surgery unless it is needed.

Do it if they say it's time.

I had mine done w/o symptoms, but per doctor's advice and when it came out, my surgeon said it was shot, just waiting to fail.

An unplanned emergency surgery is much worse than a planned interruption on you, your child and your family. Your allergies won't be too bad, mine weren't and my recovery was in early spring.

There will be plenty of time later to travel and see family, but if you suffer the symptom of "sudden death"...

 

[kernow61]

Thanks to everyone for the advice,
I 'll let u all know in a week n a bit what the consultant says but i think u are all correct in the fact sooner rather than later.
If he or her says an extra 4 or 5 mths is a little to long and too risky then so be it.
Sometimes i just wish (wrongly of course! !) that i had some symptoms that would make me realise now was the time and make my mind up for me! !

Thanks again
Keith

 

[tom in MO]

I felt the same way as you Keith. Why have it done, I have no symptoms? However right after I was told to do the operation soon I had my first bout of dizziness. I only had the one before the operation, but it helped convince me it was real.

After surgery, I found out that I was having symptoms but they cam on so gradual I just didn't notice it. I live in a hilly neighborhood and about 6 weeks after surgery, I realized I was no longer bushed or out of breath at the end of the climb up the hill, like I had done for years before surgery. Now two years later, I actually shovel snow quickly with no loss of wind.

 

[Rachel]

I echo what Tom says about the lack of symptoms....I didn't think I had symptoms either......it's like if you've felt that way for a while you think it's normal so you don't think you have symptoms until after the surgery then you realize - "oh, so that's what it feels like to have energy"

It's really insidious

 

[epstns]

Symptoms? I never had any "symptoms."

I finally told my cardio it was time for surgery "because I was tired of being tired." While chronic fatigue isn't a "cardinal" symptom that sends you right to surgery, when it goes on for too long it may as well be.

 

[RobThatsMe]

Also because i dont have any symptoms would a physical stress test show any deteriation or give a better indication for surgery.

Keith

Hi Keith,

In my case, I was told that I needed surgery or I would not be alive in 4 to 6 months.
I was asymptomatic, "very asymptomatic", I had a StressEcho Test, and lasted on the treadmill for 13min, 23 sec. The only reason I had to stop was because by that time, the treadmill was going too fast, and was elevated too high for me to continue walking. I had to breakout into a jog.

My point is this, if you are asymptomatic, that means that your heart is really working that much harder to keep you going, and in the long run can cause you even more issues and heart damage. Just because you feel ok, doesn't mean you are ok, so go with the numbers, if they say it's time. then attack it with a positive attitude, and you will do fine!

Rob

 

[chaconne]

Keith,

I waited about a year even though my AA was 4.7cm and had severe aortic regurge. I guess you could press your doctor with your plans to wait and see how he reacts. If you have a plan and a definite time you agree to have the surgery, it may make them more at ease, rather than you wanting to wait indefinitely. But, like others have said, go with their strong recommendation.

 

[kernow61]

Hi all,
No sign of tiredness or fatigue yet.hitting same or better times on my 4-5 mile runs as two years ago.
How quick can ones EF go down.
I 'm going to ask if a exercise stress test would be beneficial in determining how the heart was doing generally.
I know the LV is getting bigger and i dont want any long term damage so will go with what the consultant says.
All i can do is ask if 5 mths is going to make much difference to outcomes of surgery n see what his response is!

Next problem.......what valve...or dare i go there? ?!!

 

[Duffey]

Hi all,
No sign of tiredness or fatigue yet.hitting same or better times on my 4-5 mile runs as two years ago.
How quick can ones EF go down.
I 'm going to ask if a exercise stress test would be beneficial in determining how the heart was doing generally.
I know the LV is getting bigger and i dont want any long term damage so will go with what the consultant says.
All i can do is ask if 5 mths is going to make much difference to outcomes of surgery n see what his response is!

Next problem.......what valve...or dare i go there? ?!!

Keith, my EF never really dropped. In my opinion, EF is not a good indicator. Final confirmation for me came via echo and heart cath.