Heart Ailments and Surgery
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Heart Ailments and Surgery
May 2005
My daughter is scheduled to undergo a cardiac catheterization procedure sometime
in May or early June, and to undergo open heart surgery to correct Ebstein's
anomaly later in the summer. Both procedures will take place at Children's Hospital
in Oakland, under the supervision of cardiologist Dr. Kishor Avasarala and cardiac
surgeon Dr. Frank Hanley.
I would like to hear from those whose children have had caths and/or cardiac
surgery at Children's, especially if your child had either of these doctors or required
correction of Ebstein's (which is pretty rare). I am so far comfortable with our
doctors, but would like to know more about what to expect from them in a surgery
situation. Also, I would like to know what was most helpful for your child before,
during, and after the cath and surgery, what it was like coming home, if you had to
cope with posttraumatic stress disorder, etc. Did the ChildLife specialists from CHO
really help your family cope?
I am trying to gather as much information as I can.
Thanks.
I have a friend whose children dealt with Ebstein. She and I are
currently fundraising for Children's Hospital and believe that they are
a fantastic resource. Please email me and I'm happy to pass along her
information.
jules
I forwarded your post to my friend who has been there MANY times This is
what she wrote:
~My daughter is a patient of Dr. Avasarala and Dr. Hanley's partner has
done all three of her open heart surgeries. Morgan has also had two
caths done and will be going for her third next month. We have done
everything at CHO and I would be glad to answer any questions you have
about the hospital and the doctors. There is a lot to be prepared for
and I will just say don't count on the child life specialists for to
much!!!
Hi, our son recently had surgery with Dr. Hanley (we haven't worked with
Dr. Avasarala, but have heard great things about him), and we've had two
caths at OHS. I have found it very helpful to talk to other parents and
I'd be happy to talk to you about it if you want to email me directly.
It's funny you mention PTSD.
You don't mention how old your daughter is. My daughter had OH surgery
to repair an ASD and a deformed valve almost 2 years ago, a month before
she turned 3. We had it done at UCSF Children's Hospital because at the
time, CHO wasn't an option with our insurance. The 6 week lead time from
diagnosis to operation was the worst; the actual surgery time was
extremely difficult emotionally for me; but the recovery was amazingly
quick! She was in the hospital 5 days, then came home and happily ran
down the hall to meet her brother. We had to be careful of her sternum
for the next few weeks for it to heal, but otherwise she was fine.
She was able to return to preschool 3 weeks post-op. Now, everyone who
knew about the surgery has almost forgotten. ''Wow, I keep forgetting
she had surgery!'' She has a chest scar, but it is fading. Once a kid at
her preschool asked how she got the scar.
''Well, the doctors fixed my heart, and they gave me this scar,''
she said. She seems to have no emotional repurcusions and she has no
restrictions on play or otherwise (except for taking antibiotics for
dentist appointments).
Now, however, I have to wonder if I have some PTSD. My older child broke
his arm recently and I found out today he has to have surgery under
general anesthesis to stablize it. When the orthopedist told me, I
almost burst into tears. Truthfully, the arm surgery is not that big of
a deal, but I think because of what happened with our family already I
took it harder than most would.
The emotional recovery from my daughter's surgery took a long time for
both myself and my husband. I think it was at least 6 months before I
could relax and let her play on playground structures without worrying
too much about it, for example.
I am not saying all of this to scare you. I am just saying that some
people may have a harder time dealing with the stress than other people.
You may be one of those people, but you may not be.
Most people would probably say that I handled the whole thing well, but
on the inside I was a nervous wreck. Looking back on the experience, it
was pretty ''textbook'': simple procedure, simple recovery. However, it
affected me in a way I couldn't have predicted.
As for the child-life people, they were okay but pretty useless to me
and my daughter. She was much more into playing with doctor kits and
playing Doctor and Patient *after* the surgery. I am sure she needed to
process some of what happened to her and this was the easiest way for a
kid whose life is pretty much filled with imaginary play :)
(Aside: the diuretic liquid they give to reduce the possibility of fluid
building up in the body tastes horrible. Much screaming and refusal to
take the medicine ensued and finally the cardiologist prescribed a small
pill instead of the liquid. I crushed it up and mixed it in some jam and
it was MUCH better. If your child has the same reaction, ask the doc to
do the same thing for you.)
Feel free to e-mail if you need someone to talk to.
Laurel
Dr. Avasarala is an outstanding cardiologist who is brilliant and also
very caring, thoughtful and has a great bedside manner. He is an expert
in cardiac electrophysiology and does many, many catheterization
procedures on tiny infants and children. You should have complete
confidence in receiving the best of care from him. I have worked with
him and seen him care for many patients.
Anon
June 2004
My 20 month old son is about to have a Cardiac Catheterization
procedure to close his PDA (hole in his heart) at Oakland
Children's Hospital. Does anyone have any experience with
this? What was your child's experience like if they had this
procedure done?
Thanks much!
My daughter, who is now almost two, was born with a fairly
major congenital heart defect (transposition of the great
arteries, a large VSD, an ASD, pulmonary stenosis)... so
we've been through two open heart surgeries and she's
doing fantastic! I'm telling you this because she's a patient
at Children's and everyone in cardiology is really terrific.
We've gotten to know all of the cardiologists there, and
they're all great. One of the procedures she had to have
done five months after her first surgery was an exploratory
cathaterization, which is actually not that different from a
PDA procedure. She did fantastic and we actually were able
to take her home that night. I think sometimes they keep
kids overnight? I also have a very close friend whose
daughter had the PDA procedure done when she was
almost two. She also did absolutely fine and was out of the
hospital the same day. Hope that helps to know.
If you'd like to talk more about it, send an email and I'd be
happy to send you my phone number and talk to you further.
Tamara
May 2004
I have a very strange heart beat sometimes. It doesn't
happen during excercise and has nothing do to with
drinking beverages with caffein. All of a sudden it beats very
fast or sometimes it feels like a flickering heart beat which
last only about 2 seconds. My doctor also just discovered
that I have a heart deffect but he said it has nothing to do
with irregular heart beats. I have a bicusbid aortic valve and
I need to have yearly ultrasounds of my heart and take
antibiotics when going to the dentist. I was shocked that I
had something wrong with my heart because I am not
overweight, my cholestherol is 130, I eat healthy and work
out an hour every day. The cardioligist told me to wear a
device for 24 hours so he can see what 's up with these
strange heart beats. Of coursce after wearing the device for
24 hours I didn't get these strange heart beats. Sometimes I
have them only once a week and sometimes I have them
every day.
Should I just wear the device again until we catch these
strange heart beats or should I just not worry about it ? I
read that irregular heart beats can lead to a blood clot in the
brain and sometimes lead to a stroke.
Does anybody out there has the same experience with a
strange heart beat.
worried
Your bicuspid aortic valve is something you were born with,it
happens in 2% of people (the valve has 2 flaps instead of 3). It
often causes no signs or symptoms, esp. in childhood. During the
aging processes these valves can sometimes develop leaks etc.,
so this is why follow-up is recommended
Many people have occasional ''skipped'' or ''extra'' heart beats,
and usually they are not dangerous at all. If it only lasts a
few seconds, or if you get a few flip-flops over a couple
minutes, it's probably nothing to worry about. The Holter
monitor you had is helpful even if you were fine that day- if it
was normal it means you're not having lots of irregular beats
all the time- just when you notice them. Very rapid heart beats
that don't stop or fainting/ lightheadedness are signs of a
serious heartbeat problem.
Neither of your heart concerns is at all due to poor health
practices or diet or cholesterol- those can be related to a 3rd
type of heart disease problem, ''coronary artery disease'' which
is the build-up of cholesterol in the small vessels of the
heart, which can block oxygen to the heart leading to heart
attacks.
a cardiologist
First of all, I think this is a question you really should
discuss with your doctor but having said that, I had a similar
experience about 2 years ago.
How old are you child(ren)? I began to notice my irregular
heartbeat shortly after my daughter was born. I went to the
doctor and wore the heart monitor for 24 hours. I didn't have
much activity during the time I wore the monitor either but my
doctor discussed how sleep deprivation can cause heart
flutters. It wasn't really an answer I wanted to hear but sure
enough, as soon as my daughter started sleeping more at night,
my heart flutters virtually disappeared. I still get them on
rare occasions but they really do seem to be more prevalent when
I'm running low on sleep and high on stress.
Good luck!
Linnea
You should consider having your thyroid checked out. It's
good that you're seeing a doctor about your heart, but you'd
be suprised how many scary symptoms are caused by
thyroid disfunction - symptoms that doctors can
misinterpret. I don't know if your problem is thyroid related,
but you and your doctor should leave no stone unturned until
you discover the problem. I hope this is helpful.
MEG
I went through a period a number of years ago (mid 30s) where I
was convinced I was having heart problems. I even saw a
cardiologist. He confirmed that I had a racy heart and some
adrenaline overproduction issues which were also contributing
to panic attacks. He tried treating things with a beta
blocker, but my blood pressure dropped and there were other
undesirable side effects (fainting, etc.). Ultimately he just
suggested lifestyle changes; better diet, and more exercise,
which completely fixed everything. During these episodes, like
you I was convinced I was experiencing some very irregular
heartbeats. In my case (I'm sort of embarassed to confess) the
doctor determined that the fluttering, irregular heartbeat I
was experiencing was not my heart at all, but my esophagus (and
related organs) spasming around or after large meals. It was
occurring on the left side and I assumed it was my heart, but
in fact it was not. Your situation may be something different,
but I thought I'd mention this.
Don't know my heart from.....
It sounds like you have a mitral valve prolapse, which is very
common in women and quite common in men. Although it feels
strange to have your heart bumping around in your chest at
times, it is not dangerous to your health. Antibiotics are
recommended when you have dental cleanings because the bacteria
in your mouth that gets scraped off your teeth can more easily
enter your blood stream and end up trapped around the floppy
valve, possibly causing an infection in your heart. If this is
what you have, other than the antibiotics, you should ignore it
and not let it get in the way of any of your normal activities.
The Holter monitor test is just a way to look at the beats. The
ultrasound can see the workings of your heart quite well. You
need to get more information from your doctor on this so that
you can relax about it!
Got one too.
I also have the irregular heart beat problem, which I found out
about 2 years ago. I also wore the Holter Monitor which showed
nothing so the Dr. had me wear the Event Monitor for a month.
The Event Monitor showed the problem quite clearly. I am
currently on Betapace medication to control the beats per
minute. I am watched closely and also found out at the same
time I had high bloodpressure so am on meds for that also. The
Doctors said I could have surgery for the heartbeat problem
which they say is an ''electrical'' problem, however the risks far
outweigh the advantages so I am just taking the pills since they
are able to control the problem. However, if I run the heart
starts racing so I am careful not to run, just walk, then I am
fine.
anom
I don't have an answer about the cause of your irregular
heart beat, but just wanted to let you know that I get the
same thing and it is scary! It happens to me off and on.
Sometimes for a few days it will happen a lot and then I
won't get it for quite a while. I'm never sure what triggers it. I
thought sometimes perhaps it might have been
stress-related, or something I ate. When I was pregnant
with my second child, I had an irregular heart beat A LOT
and it worried me, but my Dr. didn't seem worried about it. I
thought it was a hormonal thing, but who knows. Anyways,
I'll be interested to read the responses to your posting!
Alexis
There is a longer type of monitor, which monitors for 30 days.
Ask the cardiologist if this would be appropriate.
Also, blood clots are complications of ongoing irregular heart
beats (ie, continuous, as in atrial fibrillation). Discuss it
with the cardiologist if you have concerns.
kristin
I can't tell you what you'd like to hear, but I can say that you
have described my symptoms almost to a ''T.'' Maybe this will be
reassuring, and maybe not: I had to wear one of those things
around for 24 hrs too, and mark down my symptoms whenever I had
them, but wouldn't you know it, I had broken my ankle a week
before the device became available (I was with Kaiser, and they
didn't have many of them), and so I was fairly sedentary that
day and didn't experience a single symptom. If you have the
option of wearing the thing longer, I'd do it--I would have
loved to have had a real answer to the thing, because as you
know, it is terrifying. I never really got an answer to why my
heart would race like that, but it eventually stopped. (I told
myself it was because our house had been treated with Chlordane
for termites, which has since been banned, but I say that
without any direct evidence-just as a way of giving myself an
explanation). I also told myself that maybe it was some funky
stress response-it was my first semester of grad school, which
was stressful, and I was sort of newly married, which didn't
seem stressful, but it was new and different. And though it
didn't seem to necessarily relate to feelings of stress or even
to stressful moments, there were periods when I was not getting
a lot of sleep, so who knows? Another doctor had said he heard
a heart murmur, which seemed to come & go, and most of the docs
didn't find this alarming. If it's any help, that was 17 years
ago for me, and I only experienced it for about 6 months to a
year. I still occasionally have the fluttery feeling, but not
the racing beat, and when I was pregnant I had it more, and felt
like my heartbeat was irregular sometimes. Other doctors have
noted the irregular heartbeat, but nobody seems alarmed, and
I've been diagnosed as being in great health. I haven't been
told that I need to take antibiotics for dental work, though my
dentist required me to get a note from my doctor. I'd love to
know if you find anything out.
janet
I have no advice to offer but I have had similar instances where
I feel as though my heart lurches or beats funny. I went to see
my Kaiser doctor. After he heard all of my symptoms, he seemed
to think it was stress that was causing it. I am not sure how
old you are but I am 30 and healthy with no family history of
heart disease. My other symptoms included increase in thirst and
appetite. I later figured out the thirst and appetite was caused
by green tea. I had started drinking green tea after the birth
of my son.
I still have the irregular heart beat though some weeks it seems
to happen more times than other. It causes me to stop and brace
myself at its worst, other times I don't skip a beat. (no pun)
I am glad your doctor is asking you to monitor it. I would
suggest you be insistent with your doctor until you reach the
bottom of it.
something similar
Sounds like what you're having is probably atrial fibrillation.
you won't know until you wear that monitor and it happens. I
think you should continue to wear the monitor as long as it
takes. Its not usually fatal, lot of people live with a. fib,
but its good to know what it is so you can have it treated
appropriately and so that you don't treat it inappropriately.
A. fib can cause clots to form and can lead to strokes, if
that's your problem.
As for the valve issue, it does sound like it's probably
unrelated but maybe you should see a cardiologist (about both
things). The practice of taking antibiotics for any dental
procedures for anyone with any valve abnormalities is decades
old, I think. It is recently being questioned - some think it's
done too much and many don't need the antibiotics. you sound
pretty healthy and the valve didn't just become that way - you
were born with it. have you taken antibiotics for previous
dental work? do you have a murmur? (murmurs MAY indicate valve
problems but not necesarily). An echocardiogram would tell if
the valve is malfunctioning in anyway and may indicate if you
really need medication. My husband had a murmur at some point in
the distant past and had taken antibiotics ever since before any
dental care - noone questioned it or reassessed his supposed
murmur - whatever he had in the past, he has no murmur now. I
don't think he's at risk for endocarditis which is what they're
trying to prevent.
Back to the a. fib for a minute - just to be on the safe side
until you get it all figured out, you should look up signs of a
stroke and tell your significant other since many stroke victims
don't know that anything is happening. If you do have any
symptoms there are wonderful medications that can give you back
your quality of life within hours, but you have to get to an ER
AND get a cat scan within 4 to 6 hours of the onset of symptoms
(this means if you wake up after 8 hours of sleep with the
symptoms, you are out of luck) to get this medication. If you
have storke symptoms, you call 911 and get an ambulance
(ambulances are the best way to skip the que in an ER and get
the busy people working there to take your case seriously and
quickly) sorry for the long reply. This is what I would tell a
family member in your situation.
not-giving-medical-advice RN
It may sound odd, but get your thyroid checked.
anon
I have random palpitations, a malformation of one of my heart
valves, a heart murmur, and I also take antibiotics before
dental work. I had lots of tests done in my late teens & early
twenties, all of which were normal in terms of heart function,
so I just try not to worry about it. According to my doctor, my
life expectancy is not affected by my condition. You may want
to see a cardiologist, to see if there are any other tests that
could be done, so that you could be reassured that your heart is
functioning normally. I have a prescription for a beta-blocker
that I can take if the palpitations become too annoying, but I
rarely take it. It's terribly scary to have irregular
heartbeats, people who haven't experienced it can't really
understand how disturbing it is. I've pretty much adjusted to
the weirdness over the last 30 years or so, but every now &
then, usually in the middle of the night, I'll have a moderate
panic attack over it ... I remind myself that I've had lots more
heart tests than the average person, so I've got proof that my
heart is working fine. I think if you have a thorough exam by a
cardiologist you'll feel better.
anon
I have a thumpity thump that is so strong I can feel it with my
hand. I hear it mostly when I'm lying down or drink too much caffeine.
My doctor told me I had Mitral Valve Prolapse and to take antibiotics
for dental work. She order an echocardiogram 'just to make sure.'
Now, an echocardiogram is about the neatest thing one can see. I'd
try to get one of those done just to see your heart moving blood in
and out. It turned out I was 'within normal range' even though
the technician saw blood spillback. So I do not have to take
antibiotics.
Carrie
I have had the kind of symptoms you described, e.g., racing,
loudly thumping heartbeat, missed beats, etc., for several years
now, and I can definitely say that they occur during two
circumstances almost exclusively--shortly before my period
and/or when I'm getting dehydrated, as I tend to run around alot
without adequate fluid intake. After consulting physicians
(including a cardiologist) who could find nothing wrong, I
remembered that my grandmother used to suffer from bouts of
sodium deficiency. So I began to drink Gatorade on a regular
basis, and the pesky missed heartbeats and palpitations have
disappeared. I'm not sure if there's a cause-effect connection,
but maybe.
Karen
January 2004
We recently learned that our newborn son has a serious
congenital heart defect. I have seen the posting from July
regarding cardiac surgeons, but I would also like to know if
anyone knows about objective sources of information to research
such surgeon;s experience and results. Also, I would love to
talk directly with anyone who has experience with the surgeons
at Oakland Children's Hospital or just experience dealing with a
child's heart defect.
Ellen
Our 3 yo daughter was diagnosed with primum ASD last July and she
had corrective open-heart surgery in August. Our insurance
wouldn't allow us to go with Children's Oakland so we chose UCSF.
Her surgeon was Dr. Tom Karl, who donates his skills to children
with congenital heart defects in Central America yearly. We were
happy to have a man of his integrity operate on our daughter. We
were very happy with the care we received from the hospital staff
as a whole. Nurses and doctors who choose to work in pediatrics
are very caring, special people. The Bay Area is a great place
for pediatric cardiac care so you really cannot go wrong with
whichever hospital you choose.
Just so you know, our daughter was home 5 days after her surgery.
She was so excited to see her older brother, she ran down the
hall to meet him! She now is totally fine and healthy, and has no
restrictions. I don't know what defect your child has, but it is
amazing what doctors can do nowadays.
It was a very stressful time for us and I know what it is like. I
would be happy to talk with you. Please e-mail.
Laurel
Hi,
I am so sorry to hear about your son's heart anomaly. I know it is a shock to
discover this reality at such an anticipated, and vulnerable, time. While my
daughter has not yet had heart surgery at Children's Hospital Oakland, we have
been thoroughly impressed with our cardiologist there--Dr. Kishor Avasarala.
The surgeons there, particularly Dr. Frank Hanley (he is chief of ped.
cardiothoracic surgery at Stanford, too) are excellent, and nationally known. I
think you are in good hands. I know you and your family are going through a
lot of chaos and uncertainty, and I truly sympathize, as my family and I went
through much of the same upheaval.
One other piece of unsolicited advice: try to get support for yourself and your
family as soon as possible & don't scour the web for info on heart defects until
you have such support, as it can send you into a tailspin of confusion, worry,
and/or depression.
If you would like to talk, feel free to call me.
Elizabeth
My son had surgeries for Tetralogy of Fallot (a congenital
heart defect)several years ago. The surgeon both times was
Kevin Turley (surgeries were at UCSF and Kaiser SF). We are
Kaiser members and he's the pediatric cardiac surgeon they
contracted with. I was impressed by Dr. Turley's dedication
and we had good outcomes (as far as we know) but it is
difficult for a laymen to speak to a physician's quality. It
was quite an ordeal to go through but necessary. We are
thankful that our son is alive and thriving.
I would be happy to talk with you about the experience.
mg
I'd like to highly recommend Dr. Ziad Saba at children's hospital in
Oakland. He's sensitive and kind, good with kids, and most importantly
he actually converses with parents instead of just lecturing. I'm the kind
of guy who reads obsessively on my own and he's been very generous
in discussing journal articles with me and taking my opinions and
knowledge seriously. Talking with other cardiology parents, I have
heard nothing but good things about all of the docs in this group. In
particular, one friend has very good things to say about Dr Avasarala
(sp?). I think you can't go wrong with this whole practice.
zac
I'm so sorry to hear about your son's condition. There is a
surgeon at Childrens Oakland named Chris Hardy. He is very well
respected and was the leader of a team of doctors who trained
surgeons in the Soviet Union over a number of years. Children's
Oakland also has social workers who can link you up to other
families who have children with heart defects similar to you
son's. Wishing you and your son all the best.
Karen
I had a consultation with Dr. Craig Albanese, head of pediatric surgery at
Standford. I felt in good hands although we never did require his services.
His number is 650-723-6439
best of luck to you
Hello parent,
I work with several pediatric cardiologist and cardiothoracic
surgeons and several who have moved on to other institutions.
Alot depends on the kind and severity of defect your child has.
Even the simplest defects can still have complications. I would
highly recommend Dr.'s Frank Hanley and Mohan Reddy, both who
are currently practicing at Stanford Hospital.
Pediatric ICU RN
We had a great experience at Oakland Children's Hospital where
our child had heart surgery last June. I'd be happy to talk to
you about it. You can email me offline at
ML
My daughter, now 18 months old, was also born with a
serious congenital heart defect (Transposition of the Great
Arteries, multiple ASDs, a large VSD). She's been treated at
Children's hospital since birth and we've been extremely
pleased with the care. She's doing FANTASTIC!
We love our cardiologist, Dr. Avasarala and I recommend
him highly and without reservation. My daughter has had
two open heart surgeries so far and has more in her future.
Our surgeon thus far has been Dr. Mohan Reddy. We've
heard he's one of the best. He was recently written up in the
Best Doctors in the Bay Area issue of the San Francisco
Focus Magazine and we've read other articles over the past
two years touting his expertise. He works with Children's
Hospital and with Stanford. Dr. Hanley has also been highly
recommended to us as the best pediatric cardiac surgeon
out there, he also performs surgeries at Children's.
Please feel free to email me directly as you are going
through this. I would be more than happy to share
information and/or just listen. Best of luck.
Tamara
It's hard to get ''objective'' information about physicians- who
would evaluate them except peers who work with them- test scores
for instance wouldn't tell you much about surgeons? How does
someone ''grade'' your pediatrician for instance- whether his
patients like him? No one gives scores for his success rates
with ear infections- alot has to do with how patients respond to
therapy. The ''best doctor'' issues in the SF Magazine and US News
are based on rankings by other MDs who are in turn basing
on ''reputation'' or personal experience, which is biased- if you
work with a particular surgeon, you don't work with many others
to compare to. If a surgeon has published journal articles on a
particular subject, he is very likely to have had good results
in that area, but it doesn't mean he's the best. Comparative
results by surgeon for any particular heart surgery are not
published on the Internet- there are too many factors to
consider- every baby's exact heart problem is a little
different. The best you can hope to do is to ask overall
mortality rates for a particular heart surgeon, BUT the best
surgeons often operate on the most complex cases, so they might
have a higher mortality rate because they take on cases other
surgeons have felt were too high risk.
In general, for all types of surgery, surgeons that do alot of
cases are better than those that don't, and larger centers, such
as those of universities and children's hospitals have better
results. You are in good shape to be in the Bay Area in this
regard- lots of patients served by large centers for cardiac
surgery. Ask your cardiologist who he would recommend, ask why,
and ask to have a conference with the surgeon- and if you aren't
comfortable, ask for someone else as a ''second opinion''. There
are parents support networks online where you can get the ''buzz''
on MDs for particular diseases. Be warned however, that if a
child does well, his surgeon is God of the universe; if not, he
is a horrible surgeon that should have his license revoked, so
this is the most subjective information of all.
Unfortunately, medicine is still a very human science, involving
alot of trust between families and MDs. Having had a child who
had relatively minor surgery, I know it's a leap of faith to
allow someone to carry my child out of my arms into an operating
room- you do the best you can to assure yourself your baby will
be in competant and caring hands...and then you just have to
leap. Best wishes...
Aug 2003
I just had a heart ultrasound done and my doctor found out
that one heart valve is missing ( I am born like that). He was
doing the ultrasound because he wanted to check out a
heart murmur. The cause of the hear murmur is that I have
slightly worn heart valves since one valve is missing. The
doctor said that I propably won't have any problems right
now but maybe in the future. In this case the valve might
have to be replaced. I am otherwise pretty healthy. I don't
have high cholesterol, I am not overweight, I don't smoke
and I eat healthy and excercise. I just thought I post this
since I want to know how other people deal with this
condition. Has anybody had surgery because of that ? How
is life after that ? I know I can ask this questions also my
doctor but it's good for me to know from people who have
what I have. Should I also get another opinion ? How else
can I prevent my valves from getting worse ? Is this
condition considered very serious ? Any input on this would
be very helpful for me.
I don't know if my dad's experience is helpful, since things may
have changed since his valve problem many years ago. He had
always had a hole in his valve, and there was talk about surgery,
but he didn't do it until he already had major heart damage, and
he never really recovered from the damage. I also know of
someone else that this happened to. It seems like you should
find out whether there is a point at which you can catch problems
before they cause irreversible damage. I always wished he had
taken the risk of surgery when he was reasonably healthy.
anonymous
July 2003
My husband and I were recently presented with the distressing
news that our almost 3 year old daughter will have to undergo
open heart surgery. Our initial consultation was at UCSF but we
are also open to going to another facility for the procedure. Our
insurance contracts with Lucille Packard and we're more inclined
to go there, but we are still in a bewildered state and we don't
really know what to do. Does anyone have any recommendations? Our
daughter has a form of VSD called ''ostium primum atrial septal
defect.'' Any advice or recommendations would be greatly
appreciated. Thank you!
Laurel
In that I am a local pediatrician, I can't play favorites but a
little info to get you started on making your decision. First,
please try not to worry too much. Open heart surgery is never a
trivial matter, but the risks of complications during this
specific surgery are very low, and once repaired you can look
forward to a normal life for your daughter. As well, there is
alot of attention paid in recent years to making incisions so
that the scars are more cosmetically acceptable.
Second as regards terminology, your child has an ''ASD'' (not a
VSD) for ostium primum Atrial Septal Defect, ''primum ASD'' is the
most efficient way to say it while providing complete
information to physicians. ASDs are holes between the upper
chambers of the heart (the atria), VSDs are in the lower
chambers (ventricles).
In the Bay Area, there are 3 excellent places to have heart
surgery for children: UCSF, Stanford/ Lucille Packard, and
Children's Hospital Oakland. The best known pediatric cardiac
surgeon is Dr. Frank Hanley who operates at both Stanford and
Children's, although he was at UCSF until 2 years ago. His
associates, Drs. Mohan Reddy (Stanford) and John Lamberti
(Children's) as well as Dr. Tom Karl (at UCSF, came when Hanley
moved to Stanford) also have outstanding results. I know that
Dr. Hanley makes a fairly small ''limited sternotomy'' (vertical
middle of the chest) incision and that Dr. Lamberti has the
largest local experience with the ''submammary incision'' for
girls, which is about the same size but lateral under the breast
area, so it will be hidden by a bra or bikini top and under the
curve of the breast when she grows up. Look up the surgeons and
the incisions on the Internet.
Your child's heart defect is relatively common, and all of these
surgeons have alot experience with it, I would make your
decision taking into account your insurance coverage- for
instance, it's not worth the extra premium to have surgery at
UCSF if your insurance contracts with Stanford/ Packard. But if
there is a surgeon, hospital, cardiologist, or incision you
really prefer, take that into account too.
Anon MD
Our son has undergone six surgeries, with all but one of them
done by Dr. Frank Hanley. He was born with a very rare heart
defect and Dr. Hanley was the surgeon who pioneered the type of
surgeries that he needed. We think he is an excellent surgeon
and have been told by many that he is the top in his field. He
was at UCSF when our son had his surgeries, but has since
transferred to Stanford. We also think highly of the
practitioners at UCSF, but have not had any of their surgeons
perform the surgeries so can't speak to that. If you would like
to talk further, feel free to email me.
Terry
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Last updated: Jun 21, 2005
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