New member asks "when to do it?"

[ChouDoufu]

hello everyone, new member just registered. 44yo male, good health. living
in china (studying chinese).

the short history: local clinic found a murmur in 2001, echo at a v.a. hospital
was problematic, vegetation caused doctor to think i had a prosthetic valve
(with no external scar even). redid a transesophogeal echo, found moderate
vegetation, mild valvular stenosis, mild to moderate regurgitation, all aortic.
ef>60%. doc says will have to be replaced someday, but in the meantime no
special precautions. can continue cycling and running, any distance - even
marathons - as long as not competitive. up to this point no symptoms. only
med is simvistatin to control cholesterol.

recently: had another echo with a new doctor here in china. he has seen
no change in condition from the last echo, but prescribed beta blocker and
ace inhibitor. also recommends limiting running and cycling to max 30 minutes
2-3 times per week. do the echo annually, and we'll see. i still have no
symptoms, but running times are getting very slow, and tired after 1-2 miles.
ok, i'm getting older, there's more pollution, i'm at 6000 ft altititude. still no
weakness, dizziness, shortness of breath.

question: WHEN do you and your doctor usually make the determination to
have a valve replaced? i know it has to be done eventually, but should i
get it done now when i'm younger, and can better recuperate from major
surgery? or should i wait until the current valve is about to fall apart? is
there a standard formula for this? what are the decision criteria?

other notes: not having a career or even a real job, there is no health
insurance, other than traveller's insurance for overseas students. this of
course will cover major medical problems, excluding prior conditions and
expenses in japan or the united states. as the operation will be self-funded,
i'm looking into "medical tourism," having the procedure done in india or
malaysia. there seem to be some good options at recognized hospitals with
very qualified surgeons. oh, and the total cost (including airfare) would
be under US$10k. given my financial situation, and that i'm not sure about
getting into the v.a. for this, may be the way to go.

 

[ALCapshaw2]

It would help to know your Effective Valve Area and the Pressure Gradients (average and peak) across your Aortic Valve.

Many Doc's recommend AVR when the effective area drops to 0.8 sq cm. I've forgotten the 'trigger number' for aortic gradients.

 

[ChouDoufu]

from 2005 echo: +3 aortic regurg, mild AS, peak AV grad of 24mm, EF > 55%

from 2005 trans-echo: peak gradient across aortic valve is 38mmHg,
no AVA estimated. EF > 60%

from 2008 echo: EF = 76.8%, effective valve area 2.53 cm2,
AV = 322, PV = 87

** i'm not quite sure about the AV and PV readings. i'm translating from an
echo report written in chinese. this section has values in mmHg, so....
unless there's a standard abbreviation on these reports for average and
peak gradient.....

 

[ALCapshaw2]

from 2005 echo: +3 aortic regurg, mild AS, peak AV grad of 24mm, EF > 55%

from 2005 trans-echo: peak gradient across aortic valve is 38mmHg,
no AVA estimated. EF > 60%

from 2008 echo: EF = 76.8%, effective valve area 2.53 cm2,
AV = 322, PV = 87

** i'm not quite sure about the AV and PV readings. i'm translating from an
echo report written in chinese. this section has values in mmHg, so....
unless there's a standard abbreviation on these reports for average and
peak gradient.....

I'm surprised that the Effective Valve Area was not measured since that is a critical item for determining timing of surgery.

The increasing Ejection Fraction is cause for concern.
Normal is in the range of 50 to 65% (Not sure of exact numbers). Your Latest EF of 76% *may* suggest that the Heart is compensating for a diseased valve. Another indicator to look for is Enlargement of the Heart or Chambers.

I'm not sure what the AV and PV numbers refer to.

'AL Capshaw'

 

[Mary]

As Al just wrote, the EF rise is a little disconcerting. However, since it was measured by an echo rather than the TEE, that may account for some of the difference in number.

You asked specifically if it's better to get it done while you're younger. I would use age less as a determining factor than anything else. You don't mention what valve type you're leaning towards, but in my opinion, the longer you can keep your native valve, the more time you're buying with the one that will be implanted.

I would follow the latest recommendations from the card and see if your tiredness decreases. I was in a similar situation, but stenosis rather than regurgitation was my issue, and it was about three years after I first started feeling tired before I had mine replaced. But, as you often read here, the deterioration goes faster the closer you get to replacement. Your cardiologist seems to be keeping a watch on it, so that's good.

 

[Adrienne]

I have a question. What caused the vegetation to be there? I always thought that endocarditis caused that. Am I wrong? If it were endocarditis, how could you have had it without knowing, and how could it have gotten better on its own?

 

[ChouDoufu]

alcapshaw: last week's echo measured the EVA at 2.53 cm2

mary: valve type seems to be a coin toss considering age. have to choose
between daily meds with mechanical, or possibly going through surgery
a couple more times.

not really feeling tired, daily activities no problem, nor is hiking or stair climbing.
only when out jogging - but maybe i'm bored with it, or tired from lack of sleep
or poor eating habits. can still bike uphill for an hour or two with no effect.

unfortunately, have no set doctor, as i move too often. have seen a local
doctor here for the past year, but will be moving to guangxi province next
month, so will have to search out hospitals and doctors, most likely in the
provincial capital.

adrienne: no idea what caused the vegetation. high cholesterol? doc at the
v.a. had no idea either. anyway, the TEE report states "moderate size
vegetation or mass on right coronary cusp of aortic valve. large vegetation
or mass on the non-coronary cusp of the av. also what appear to be
moderate-to-large, old healed vegetations on both the right and non-
coronary cusps." this was a follow up to the TTE where the doctor thought
the av was prosthetic.

 

[ThomasAw]

Hello ChouDoufu,

I am from Malaysia. I had an AVR (St. Jude Mechanical) done in February 2008 at our Heart Institute here in Kuala Lumpur. Mine was detected in 1998. I was under monitoring & the doctor said my heart is getting enlarged & recommended surgery. I had no symptoms.

Thanks

 

[ChouDoufu]

thanks for that, good reading.

 

[afraidofsurgery]

my AVR

my AVR

Hi,
My avr was done for mod to severe regurgitation after about 8 years of monitoring 1) change in health or symptoms, and 2) ventricle size as measured by an echocardiogram. The 'trigger' turned out to be appearance of shortness of breath and some angina, since the left ventricle did not show a significant increase in diameter (which would indicate early stages of heart failure I think). Thing is, some changes were gradual and I didn't realize I had become so tired until I got my new valve.

I chose a mechanical valve since I was 43 when the surgery was done and at that age the tissue valves are expected to last about 13 years, not long enough for my taste. I take coumadin, no problems there.

Only thing I was most concerned about was that if I waited too long, permanant damage can occur to the heart muscle, which replacing the valve would not fix.

Good luck!
Patty

 

[Lisa in Katy]

Although Rheumatic Fever usually attacks the mitral valve, I've heard of people who have valve problems consistent with the effects of RF (vegetation, etc.), even though they don't remember ever having symptoms of RF. So, it is possible to have endocarditis, think that you have a bad case of flu, mono, strep,etc., possibly be treated with antibiotics, and "recover" without realizing the damage left behind.

As far as timing of surgery, my only suggestion is don't wait until your heart is in really bad shape because it makes your recovery more difficult and could leave permanent damage. I went 22 years from diagnosis to surgery, had an enlarged heart for 22 years, high EF, a severe jet stream of back flow. Luckily, probably because of my age at the time (36), I recovered fairly easily and my heart did return to a normal size.

Also, many people with aortic problems have aneurysms that could cause other concerns. Did they detect anything like this on your TEE?

 

[Dina]

Lisa and I have a similar history, I was diagnosed with tricuspid regurg almost
20 years ago , and because I waited SO long I did some rt sided damage
from the overload on my heart. Now , 5 months after surgery ,there has been
very little reversal- though I still hope.
So I think you and your doctors should keep a very close watch on your
symptoms, the data on your echo, and any indication of worsening or stressing . Also keep a watch on any signs of infection; since you had
vegetation ,the scar tissue that this leaves behind can increase the risk
of that area being re-cultured .
Wishing you the very Best-Dina

 

[ChouDoufu]

thanks all for the replies.

no RF that i'm aware of, but did have terrible allergies growing up, usually
wound up with strep throat every fall, usually missing 20-30 days of school
every year until junior high, then started to grow out of it.

from then on, no significant health problems, started running early 20's,
completed half a dozen marathons (best time 3:08), mid-thirties spent two
years cycling NZ/AO, usually 100 miles day/5 days per week.

recently running times getting very slow, now i'm lucky to break 8 minutes,
no energy to run more than a couple miles.

just starting new meds (ace-i and bb), will be moving from 6000' to under
1000' next month. will monitor for changes.

i'm kinda leaning towards sooner rather than later, and going with mechanical,
despite the drug therapy. depending on the results of the next echo....
maybe a christmas present?

 

[bird lady50]

when do i

when do i

funny you should say I have been dignosed with a bicuspid valve and angina . They have told me that i will have to have the valve replaced sooner or later but have give any signs to looks for when it failing or needs replacing. They have put me statins as well even though the fat in the blood is not high. I aslo have an angnia spray.

 

[ChouDoufu]

had an interesting experience the other night; going to bed and heart
rhythm felt 'strange.' checking my resting pulse at about 50, found
i was skipping beats. monitored for about half an hour, then decided
to see if anyone was home at the local hospital. 4am no taxis were
out, so walked the six blocks, woke up the doctor, and managed to
explain the problem (fortunanely, EKG in chinese is EKG!). unfortunately,
he was unable to get a decent reading, only got the clamps at wrists
and ankles to work. not used to folks with chest hair, the little suction
cups wouldn't stay on. strange, they have no stethoscope.

i'm guessing it was caused by stress of moving, girlfriend coming to
visit, lack of sleep, too much coffee, or the new meds. bought a
stethoscope (tingzhenqi) the next day for $2.50, and have been self-
monitoring. only occurs at resting rate, and has pretty much cleared
up.

talked about future surgery with the girlfriend, replacing the valve
and deciding what type - mechanical or biological (beef, pork or poultry),
and she says "get the meat one!"

spoke with a nice surgeon who prefers the edwards perimount magna,
research shows that one to be a good choice. may even get 20+ years
from the latest models.

plan is now to fly to india next february for surgery, followed by 2-3
weeks at a beach resort for recovery. working with a surgeon with
7000 surgeries at one of famous heart institutes in new delhi. guess
i'll have to post a detailed write-up once complete.

 

[Ross]

Hope your weren't planning on doing anything at this resort unless you wait 2 months before going.

 

[ChouDoufu]

no, the resort is part of the surgery 'package.' after a week or so in
hospital, they put you in a five-star resort to rest and recuperate,
if promise to wait until the final week before participating in the
nude beach volleyball competition.

 

[ChouDoufu]

both cardios (in usa and china) agree that replacement is not urgent, apparently
they want me to wait until i begin to show serious symptoms. there's been no
significant change over the last three years. for now, seem to be okay, should
be able to last 5-1/2 months without problems....need time to arrange flight and
visas, etc. if necessary, i can always move it up. i'll be heading to the big city
of nanning soon (two hours by train) to check out a recommended hospital.
depending on situation, could have an echo done every month until i leave.
(TTE: $30, TEE: $45, consult: 40 cents......they're usually okay with the basic
stuff, in the bigger cities anyway, but you don't wanna get sick here)

 

[ALCapshaw2]

It sounds like it's time for you to spend some time browsing through the Valve Selection Forum, starting with the "stickys" at the top of the Forum List.

YES, the Bovine Pericardial Tissue Valve does have a good record for longevity *when implanted in patients in their 60's*. The Younger the patient, the Faster *ALL* Tissue Valves deteriorate.

MNmom received a Bovine Tissue Valve in her 20's to allow her to have children, which was the right choice for her at that time. It served her well for 10 years. She now has a Mechanical Valve (replaced this year).

To my mind, the On-X Mechanical Valves offer significant technological advancements over the older mechanical designs. See www.heartvalvechoice.com and www.onxvalves.com for the details.

 

[SHEEPDOG]

Sounds like that commercial ...

Sounds like that commercial ...

... I saw on the Olympics. Where the guy sees the girl and after his clumsiness causes all the destruction he finds the Dr. is the girl he saw. At the end of that, they show a goat and some chickens in the waiting room of the same office. No thanks!!!
AS FAR AS WAITING, You said that both CARDIOS say you should wait. There have been recent posts elsewhere that CARDIOS tend to be LOTS more conservative re. SURG. This can lead to extensive problems if their timing is off. Surgs. want to get it over so you can get on with it before real damage id done. The NP that got the MD that started the ball rolling for me had been in cardiac ICU for a long time prior. She said she saw that patients did MUCH better with surgery BEFORE symptoms came around. DON'T WAIT TOO LONG.

PS. I will be 44 in 2 weeks. I am 6+weeks post op now. Not fun but not bad.