New member asks "when to do it?"

[ChouDoufu]

it's not that i'm in such an isolated area.....sure it's a small town.....but then
a small town in china has 350,000 residents. we've got two hospitals,
uncountable clinics, and even a KFC. it's just that things are done
differently here. the Chinese aren't that good at science stuff, or
following directions, or planning. there's a distinct lack of creativity
and independent thought. sooo, if the list doesn't say stethoscope,
no one's going to consider stocking one in the emergency room.

i don't anticipate any emergencies, but in the event, the doctors here are
capable of stabilizing and transporting to a nicer hospital only two hours
away in a small city (pop. 4 million).

ah, chickens. last place i lived, also pop 4 million, on 24th floor of a new
high-rise, every day awoken by the roosters kept on a 25th floor balcony.
sometimes it's like living an episode of beverly hillbillies!!

did manage a short run today, as the temps are finally under 100 degrees,
and humidity has dropped to 75%. turns out a drop in altitude does help,
cut 2-1/2 minutes off my 2-mile, now at 16 minutes. hr at end is 130 bpm.

 

[ChouDoufu]

decided against having an angiogram done here....tooooooo scary. also, the echo
docs in nanning are away on business this week, and won't be in next week due to
national day holiday. local hospitals cannot perform tee, so had the standard tte
done today. resulting change over three months (june 08 -> sept 08):

-- ejection fraction remains unchanged at about 75%
-- effective area has dropped from 2.53 to 1.70 square cm
-- peak gradient has increased from 41.5 to 61 mm Hg.

don't know how good the techs are here, are how accurate the equipment is, but
looks like i'm on track to start the downward spiral. still don't feel truly symptomatic,
but have noticed some things since reading posts here:

-- sometimes get the irregularly regular heartbeat. will randomly skip a beat, followed
by a louder thwomp, which i can feel throughout my chest.

-- regular heartbeat sounds awful compared to healthy beat. how to describe.....
start with a loud whomp, followed by a swooshing sound (kinda like the doors
opening on the enterprise for you star trek fans), followed by a tick. that can't
be good.

-- sometimes get a grey mist that affects vision in one eye, but goes away after
a few minutes.

-- have gotten dizzy when standing up a few times, although that's probably normal.

-- water retention? is that a symptom? every now and then, rarely really,
ankles and wrists can get 'pudgy' so can no longer see bony parts and
tendons. goes away within half a day or so. no pain or discomfort, just
feels 'thick.'

today's cardio (they don't seem to have regular doctors here, just whoever is on duty)
agrees that i need replacement. when to replace he cannot say. as to exercise, i
think he said moderate. can run and cycle as much as i like, as long as no discomfort.
my plan is to cut running to 2 miles, 2-3x per week, cycle 25-50 miles on weekends
(this is mountain terrain), plus some light weights, as long as it's comfortable.

checking the calendar, i'm looking at avr on or about january 5th....only 105 days.
time to make a short-timers calendar.

 

[The English Patient]

Hi ChouDoufu and welcome,

We have a lot in common. I was diagnosed 4 years ago with moderate aortic valve leakage and told I would probably have surgery sometime over the next ten years. I am 45 now. However after 4 years of monitoring (last appointment 4 months ago) no change in any of the numbers. Heart the same size, regurge still moderate? I do get symptoms but nothing that says get something done? I exercise daily (long walks not running). Never had shortage of breath to date? Like you I can never quite say for definite if something is a symptom?

I feel as though I am in a state of suspended animation waiting for the time I may or may not need to be fixed?

 

[ChouDoufu]

since the area and gradient numbers changed so much over just three months, either
i've got some serious deterioration, or the techs and/or equipment are not up to
standard. (odds are the latter!) for now, i'll be closely monitoring any changes, and
will do another tee in six weeks, then in another six weeks. may try one in the other
town hospital or hit the next town over, just for comparison. will also be continuing to
prepare for the big trip in january.

cycled about 30 miles day before yesterday on some very steep dirt roads with no
problems, but today only managed to run 1.5 miles in 13 minutes. yeah, it was hot
(100 degrees) and humid (85%), and only slept 5 hours night before, and and and.
but since was only six hours after the echo results, trying to relate every ache or
strange feeling to heart problems, just couldn't concentrate on running.

 

[The English Patient]

Do you find yourself searching for alternative explanations for your symptoms?

 

[pamela]

Hi Chou, You are symptomatic and it sounds like the beta blockers are trying to keep you from PVCs and PACs but can't block them all. An echo can show a wide variance in measurements depending on the emitter angle, the tech and the interpretation of the images by the cardio.

Cardiologists are heart healers, cardiac surgeons are heart mechanics. You have an incurable heart defect and the only way to save your life is to have the faulty bit repaired or replaced. It's inevitable and will have to happen some day, sooner rather than later from what your heart is telling you.

You mentioned the difficulties you were having running, your medications may have been the culprit, but as I've already said, your body may be telling you to go shopping for a new valve.

 

[ChouDoufu]

englishguy; doing both actually, sometimes blaming everything on faulty valve, other
times trying to rationalize everything away by finding other causes. sometimes trying
to convince myself that symptoms aren't really symptoms......

 

[ALCapshaw2]

It sounds like you are retaining too much fluid (swollen feet/ankles/lower leg = edema). Diuretics are usually prescribed for this condition, along with a Low Salt Diet and moderate fluid intake.

An Ejection Fraction of 75% is often the sign of a well trained athlete or a heart that is compensating for a defective valve. (My guess is the latter)

You may want to be making arrangements for surgery, or at least having a surgeon and hospital 'lined up' so that you can get there before your heart becomes critical.

 

[ChouDoufu]

the retaining fluid is very rare, maybe a couple times over the past few years. not
common, and could have other causes. normally not a problem.

well-trained? maybe used to be, ran marathons, did long-distance cycle touring (12k
miles over 18 months for example). not as much recently of course, but did a two
month trip from albuquerque to death valley (in august) then vegas the month
before they found the murmer. cycling still not affected, no problem going out for
100 mile days, or hours of hill climbing at a time....slower than before of course.

running is a bit different, and its not lungs that get tired, no feeling of being out of
breath, getting plenty of oxygen to the lungs, just not going anywhere from there.
no specific part of the body feels tired, just overall loss of energy and enthusiasm.

and yes, have been making arrangements. have the surgeon lined up and have
pretty much settled on early january, or had......there've been some 'troubles' in delhi
recently, so i'm now working on a backup plan for thailand or malaysia.

i'm sure (i hope) i can hold out for three months, but can move up the date if
necessary. as to the echo readings, i'm not too concerned yet. as pamela explained,
the readings can vary. this was a tte, which i believe is not the most reliable test.
anyway, the nice chinese technician lady was probably too scared of my hairy chest
and massive (yeah, right) pectoral muscles to properly apply the sensor.

 

[Nupur]

Surgery in India?

Surgery in India?

Hi Chou,

I am a new member here, and I don't have any advice for you. Wanted to say that I really admire your mental strength going through this in a place far away from home with limited medical care.

I was also curious about how/why you decided to do your valve replacement in India. I heard that India is fast becoming a popular destination for "medical tourism", with world class facilities, doctors and better post-op care due to no pressure from insurance companies to release the patient. I have no doubt that you will be in good hands. Where you are going for OHS in India? Is it Vellore, in Southern India? I grew up in India, and I remember that was where everyone went for OHS. Also, if you don't mind my asking, how much does this "surgery package" cost?

If you are going to be in India post op though, I'd advice against the summer months if you can help it. I guess you are already used to the heat and humidity of China, but still, it may be a good idea. Good luck with everything..

Nupur

 

[ChouDoufu]

india seems to be the place for ohs, doctors and hospitals have excellent
reputations, they're doing cutting-edge stuff (see awake surgery video),
patient treatment is first-class. vellore doesn't seem to be one of the
major destinations anymore. i'll be going to delhi. (malaysia and thailand
are in the running as well.)

they see the market for affordable health care not available in some western
countries, especially in the us, given the number of uninsured/underinsured,
and the tendency for insurance carries to deny claims and coverage until
the patient dies.

my situation is that due to "career choices," i have no coverage in the us
other than "space-A" at the va, (and we all know the va can be a scary
place sometimes, although i have had good experiences there) so whether
i could qualify for treatment depends on the workload, kind of full recently.
overseas, i have general tourist emergency type health insurance. so,
i'm going to have to cover the tab myself.

there are a number of brokers that handle packages, but i'm putting this
together myself. flight to a city with an indian consulate to get the visa,
plus the flight to india will be around $1k. the surgery at the hospital
will run $10-12K. three weeks at a resort, with a 24-hour attendant at
first, should be under $2k. so the grand total for 30 days would be around
$15k (so i'll budget $20k to cover surprises). about the cost of a
new harley....minus chrome.

 

[Jkm7]

My angiogram billed at about that amount though insurance paid a lower amount, as they usually do.

 

[ChouDoufu]

angio billed at how much????????????????

the angiogram is not included in the bill (don't know why, as it's kinda necessary),
additional fee of $500

 

[Nupur]

Chou, thanks for writing about the details of OHS in India, including the cost. I hope you get the best care money can buy in Delhi. All the best, and please keep us posted!

nupur

 

[Adrienne]

I've heard fantastic things about the hospital in Delhi. If you do a search, you might find some posts about members who have had their surgery there.

 

[ChouDoufu]

more fun in chinese hospitals. going to bed, heartbeat was again regularly irregular
(and lying on left side felt like a gerbil was in my shirt....weird.), so stopped by the
other hospital for an ekg to have something to email to my surgeon.

ekg number one once again defeated by chest hair. just can't get those suction
cup thingies to suction. so they rolled out ekg number two, cause the doc on duty
managed to find some stick on sensors. only it took nearly thirty minutes to find
the leads for that device. and the stickies didn't want to stick on hair neither.

then the machine kept cutting off and making all sorts of weird beeps, doc says
my heartbeat was too low at 52, should be 80-100. but isn't 50 reasonable for
a resting rate for an active person? anyway, managed to get some strips to scan
and email. plus the short walk raised my heart rate so the irregularities have gone.

now on line checking on flights.....just in case i need to go somewhere in a hurry.....

if anyone is wondering what things cost here....
taxi to the hospital 60 cents, ekg and consult $4.25, and last monday's
tee was $30 plus hospital registration 50 cents.

 

[ALCapshaw2]

Have you considered Shaving your Chest Hair before going in for an EKG so that the 'stickys' can do their job?

 

[Jkm7]

more fun in chinese hospitals. going to bed, heartbeat was again regularly irregular
(and lying on left side felt like a gerbil was in my shirt....weird.), so stopped by the
other hospital for an ekg to have something to email to my surgeon.

ekg number one once again defeated by chest hair. just can't get those suction
cup thingies to suction. so they rolled out ekg number two, cause the doc on duty
managed to find some stick on sensors. only it took nearly thirty minutes to find
the leads for that device. and the stickies didn't want to stick on hair neither.

then the machine kept cutting off and making all sorts of weird beeps, doc says
my heartbeat was too low at 52, should be 80-100. but isn't 50 reasonable for
a resting rate for an active person? anyway, managed to get some strips to scan
and email. plus the short walk raised my heart rate so the irregularities have gone.

now on line checking on flights.....just in case i need to go somewhere in a hurry.....

if anyone is wondering what things cost here....
taxi to the hospital 60 cents, ekg and consult $4.25, and last monday's
tee was $30 plus hospital registration 50 cents.

The charges are hard to interpret without knowing average salaries.
What does a high school teacher earn per year?
Average salary for a bus driver?
That is the only way to comprehend the difference in health care costs IMO