where to have surgery?

[elendir]

hi --

a friend of mine who is vacationing in new zealand just found out that his aorta is twice the size it should be and needs to be replaced like, umm, now.

we are trying to decide if he should have it done there (he is in hospital now) or if he should be sent home to the usa first.

does anyone know how i can find out what level of surgical volume is considered "good"? i guess i can then directly ask the surgeon involved how many of these he does....

also, recovery-wise, any clues on what to expect? is it remotely reasonable for him to plan to recover before coming home (he is alone in a foreign country) or should we bring him back for the sake of the recovery period?

(fwiw, he is 38 years old and in generally excellent health. he had no previous cardiac history; i am guessing but not sure that he has marfan's, given his age and the problem)

thanks much,
elendir

 

[Tom F.]

Do you know the exact size of the aorta? Small differences might count a lot. Also, why did they find it while he was there, did something happen?

I would be concerned as to where and how he will recover if he is alone. If they ship him off to a hotel etc it might be very expensive, and still very difficult for him. Is an extended stay in the hospital a consideration? Will his insurance even cover him there?

If it were me, I would want to come home. I would not attempt recovery alone anyplace, let alone in a foreign country. Obviously, the condition of the aorta may make that impossible.

 

[elendir]

the only thing i know about the aorta is "twice the normal size".

they found it b/c he was feeling dizzy after a day-long hike. first he thought it was a chemical sensitivity at his hotel, but he ended up going to the hospital, and an echocardiogram revealed the problem with his aorta. in retrospect he thinks he's had some kind of circulatory problem going back around 3 years.

if he does end up needing to recover down there, i (or other friends and family) will most likely go down to be there with him. i have no idea what insurance will or won't cover, and that's a scary thought but will i think have to come second to health.

i think at this point they are looking for infections that might delay the operation anyway (he had a clean bill of dental health, but may have an ear infection from diving). i am guessing that if he needs a course of antibiotics first they may as well send him home in the meanwhile.

sorry if this is not enough information....is there more specific stuff i should find out from him?

thanks
elendir

 

[George DiMundo]

If it is not a risk to your friend's health I would strongly recommend a return to the comforts of home and the support of friends and family before the surgery. I, too, am in good health and was very active up to two weeks before my surgery. Now two weeks post-op, while I am doing quite well, I would not have the strength to endure the long flight from NZ, an arduous trip at anytime.

 

[Nancy]

Hi elendir-

Welcome to the site. You are a terrific friend doing research on the subject.

The first question that came to my mind is if the doctors feel he would survive the plane trip home. Even with pressurized cabins on aircraft, the pressure can be significantly different to cause problems for someone in delicate health. He might need oxygen if going on a plane and that is quite expensive.

Find out what the size of his aorta is now, and some of our members will have some opinions.

 

[elendir]

ok, just talked to my friend.

his aorta is 8cm. which is in the "oh my god" range, i am given to understand.

he talked to the head of cardiology at jhh, who says there's probably nothing wrong with him travelling home before surgery. but his nz cardiologist and the jhh one are going to talk before a final decision is made.

he's mainly concerned with post-operation quality of life, and believes that a variation of surgery that they are doing at jhh would be a good one for him.

so! i guess now the waiting points are for the cardiologists to talk to one another, and for trying to arrange transportation back to the usa.

any advice (or just good thoughts much appreciated....

thanks again,
elendir

 

[dwfreck]

Hi elendir,

Are you any relation to Elendil? Oops, sorry, the fact that your friend is in New Zeland got me thinking about The Lord of the Rings.

You'll find that everyone here who is still pre-op is concerned with post-op quality of life. It is, in my opinion, the central consideration in most surgical decisions.

The presence of family and friends and familiar surroundings will greatly affect your friend's quality of life immediately post-op. He may be more comfortable undertaking open heart surgery at home. Of course, if he doesn't survive the trip back, that would defeat the whole purpose of coming home. What were his original plans for the return trip? If flying is too risky an option for him, are there any other options?

Unfortunately, finances often play a large part in the quality-of-life equation, if not immediately post-op, then definitely over the long haul. Does your friend have insurance? Will it pay for his surgery if he stays in New Zealand? Will it pay to transport him back either before or after his surgery? Will it pay to transport his family members to New Zealand?

It sounds like the NZ docs have a good handle on what's going on. I have no idea what the quality of care is in NZ, but I would expect it to be pretty high.

If it were me, I would want to be home if at all possible, but I wouldn't risk my life to get home.

Here's a crazy thought: maybe your friend can meet you and his family somewhere half way, like Hawaii.

 

[Tom F.]

If his aorta is at 8cm he is in need of near immediate surgery. If by "jhh" you mean Johns Hopkins, and after loking at his echo and whatever else there may be they say its ok to come home, I would do that. Even though one generally gets well at a very fast rate after these surgeries, for a time recovery can be a real bitch. I cannot help but think he would be better off home.

The insurance is something he needs to know quickly. I have heard that the quality of medical care there is good, but whether a US insurance co. will pay is an open point. Perhaps they would pay in the event of an emergency, but not otherwise. But I am just guessing. This should be investigated.

 

[medtronic of borg]

make a call

make a call

I have a friend who lives in Aukland. Her name is Dr. Janet Fanslow 86907. Go ahead and give her a buz, I think she could be of help. I know they must have a good heath care system for her to be a part of it.

Medtronic of Borg

 

[elendir]

hi folks -- just an update --

my friend's dr's decided that he having been "stress tested" in the past week by volcano-climbing and deep-sea diving would be okay flying home on beta blockers. he arrived in maryland last night, & should be seeing cardiologists today. he's expecting to end up at either johns hopkins hospital or possibly fairfax for surgery.

some more questions:

anybody know anything about either of those hospitals, and/or the particular operation variations they do there?

and what do you need to qualify for the kind of operation where you end up growing epithelial cells over a mechanical valve? (since he is so young i figure the various flesh valves are right out....)

thanks again y'all
elendir

 

[dawnwit15]

like others have already said on this thread, check with a doctor first to see if your friend would be physically able to survive the transport to the US. Also check the insurance coverage as well.
If you could get your friend to the US, I highly recommend, NY Presbyterian Columbia Univ. Hospital. Telephone#(212) 305-4434. Ask for Dr. Mehmet Oz, he is the best. He is the director of cardiothoracic surgery. He has been recognized all over the world and has in addition to my surgery, performed surgery on the President of Turkey and Joe Torre's brother (NY Yankees). He was on the Oprah Winfrey show on Friday and has been mentioned in People magazine several times. He has done thousands of surgeries and has pioneered new techniques as well.
You are a really good friend for doing this research, God bless you. Keep in touch and let us know how your friend makes out. Best of luck
dawnwit15

 

[elendir]

sorry if my last message wasn't clear -- he's in the usa now, arrived from new zealand last night. spent the night in his own bed at his own house (drs recommendations to get a good night's sleep) and is seeing dr's and trying to figure out his operation today.

thank you for the recommendation!

 

[ALCapshaw2]

I believe John's Hopkins is a MAJOR teaching hospital.
They should know how to do heart surgeries.

You can find hospital rankings by procedure at
www.HealthGrades.com

He may want to ask for a referal to whoever has the most experience with his particular problem (is it an aneurism?)

'AL'

 

[elendir]

thanks for the pointer! that was very interesting. we are familiar with jhh (we've both worked there, him more recently than i). jhh came out at three stars for all time periods, whereas fairfax got five stars for hospital +1 month.

i don't know if it is an aneurism....

 

[elendir]

update: he fainted at his parents' house last night and is back in hospital. surgery tentatively scheduled for thursday. last-minute plans in progress.

it looks like it's likely to be the st jude's valve, esp. if he turns out to be bicuspid (don't know that yet). but there's still hope for the possibility of a valve-sparing operation, which he thinks he'd far prefer (he is a very active person and the idea of being on coumadin for life is very disruptive).

not sure what to ask for now, but if anyone felt like praying for the ability to do a valve-sparing operation, or for the best of all possible outcomes, or even for him just to survive this okay, i'd really appreciate it.

thanks again
elendir

 

[ALCapshaw2]

Sounds like he got home 'just in time. It's pretty rare to do a 'save' on a defective aortic valve, especially if it's bi-cuspid.

Check out the Bovine Pericardial Tissue Valve which has a very good track record (90% durability at 15 years, many early recipients approaching 20 years). Eventually, it WILL require replacement, as do most (all?) tissue valves, but is usually free of the Coumadin requirement.

'AL'

 

[Tom F.]

If the medical issue is only an aneurysm on the aorta and the structure of the aortic value itself is normal or near normal, then a valve-sparing procedure is quite possible. The key of course is to find a doctor that has done these before and is comfortable with the procedure. If you go to a teaching hospital and find a surgeon that has performed these his chances get better. If however the valve is bi-cuspid or somehow seriously damaged by virtue of the presence of the aneurysm then a valve sparing procedure might not be possible at all, and in fact may be a very short term fix if done.

 

[elendir]

i'm afraid my access to the medical details is limited; i am not immediate family and have been out of phone contact for several days.

what i know: he doesn't have marfan's. his aorta is 8cm. he's at johns hopkins hospital (we are both jhu alums and have worked at jhh, so it's kind of familiar). i am guessing they're doing more testing (more echocardiograms?) to determine if valve-sparing is an option. they haven't mentioned bovine tissue transplant, possibly b/c he's a mere 38 years old and can be expected to outlast even a couple of 20-year valves.

what i don't know: anything else. (have they screened for ehlers-danlos? did anyone even mention bovine tissue transplant to him? has he fainted again?) so at this point it's up to his surgeons, him, and god (i am guessing in roughly that order...)

please forgive me if this is abrupt; i am frantic, and have nothing i can do except to send balloons and stfw. thanks for all the kindness, thoughts, & information....

elendir

 

[elendir]

they operated. apparently my friend's aorta was in pretty awful shape; massive bleeding, dissecting aneurism. his valve was tricuspid but repair attempts only got it to "moderate" regurgitation. it was replaced with a st jude's, and he can feel it ticking.

i guess now i go over to the coumadin and active-life forums, and try to figure out how my friend (a very active young man; he was on a volcano-climbing and deep-sea diving vacation when all this began last week) will have to arrange his life going forwards.

mainly i'm glad he's not dead.

many thanks to all.

elendir

 

[Raverlaw]

Your friend is very lucky that his aneurism was caught and repaired in time. His St. Jude should last him a lifetime. Keep us updated on his progress: in fact, encourage him to join us here when he's out of JHH. There are lots of active artificial valvers here who will be good resources for him.