February last year I had an agonising pain on my side over my liver. My Doctor thought it was shingles (which it turned out to be) but to be safe ordered an ultrasound. The radiologist who did my ultrasound was standing over me holding the transducer (probe? Not sure what it’s called!) over my side when he tripped over his own feet. The transducer moved to over my heart. He began apologising but then looked at the monitor. “There’s something in your heart” he told me. He finished with the liver and then decided to investigate around my heart further. He found a 3 x3x2 mass in my right ventricle.

My GP told me it was probably just a shadow but she would refer me to a cardiologist anyway, especially as I had on again off again low blood pressure. Two months later I finally get to see the cardiologist. He too thinks it is just a shadow but orders an echo. The radiologist who conducted the echo was flabbergasted. “I’ve never seen anything like it”. The cardiologist sent me for a cardiac MRI. This is not covered by Medicare or private insurance in Australia so I had to tell my parents so I could borrow the $800. The MRI showed the mass and they guessed it was a myxoma. The MRI also showed similar but smaller masses in my liver.

My cardiologist at this time was trying to find a specialist who would help me. The hospitals around my area did not have the capabilities to investigate it. Finally my cardiologist found someone at St Vincent’s Hospital in the city willing to look at the scans. By this time I had begun to get out of breath just walking to my car. The cardiologist suggested it was psychosomatic but ordered a special lung test anyway. The radiologist told me I had blood clots in my lungs and I should see the cardiologist that day as an emergency. I could not get in to see the cardiologist but he called me and arranged for me to see the Dr at St Vincent’s the next day.

The Dr at the city hospital was sceptical. He said if he could see it on an ordinary echo (which he doubted) he would do a biopsy. The echo was done, by now the mass was 4x4x3 and was starting to block the tricuspid valve. It had taken over a good part of the right ventricle. This Dr then referred me to a surgeon that day.

Now I was to have open heart surgery in the next few weeks to remove it. The Dr told me there was a 5% chance I’d need a bypass with a vein taken out of my leg and an even smaller chance I would need a pacemaker. After getting ready for surgery three times over the next two weeks (they had to keep cancelling as they cannot do an operation if there are no ICU beds) my surgeon arranged with my insurance to go to a private hospital but it meant I’d need a new surgeon.

I had the surgery on the 17th June, two days before my 27th birthday. The Dr came out after seven hours and told my family it had been a success. They had had to remodel my entire right ventricle using a patch made from a vein in my leg. Due to this I would need a pacemaker. They also could not get all of the mass so it was likely one day in the future it would grow back. They had also repaired the tricuspid valve. He went back in to take me off the bypass machine. My family was relieved. He then came back out to tell them something had gone wrong. My heart was fine but they could not re-inflate my lungs. He suggested they call the rest of the family and my son as it was not looking good. Transplant was out of the question as the mass had yet to be cleared of malignancies. A scrub nurse working in the theatre suggested to the Doctor I go to the public hospital next door as they had an ECMO machine. You can last longer on an ECMO machine than a heart/lung bypass.

I was on the ECMO machine for a week before my lungs started to work properly. I awoke a few days after that (freaking out as there was a tube in my throat and wires coming out of my stomach). I had thought I had been under for 6 hours so it took a while to adjust to the fact it had almost been two weeks. I then began to recover slowly. I had a permanent pacemaker put in shortly after.

The surgeon told me if I had not discovered the heart tumour when I had I would not have been alive today. I still have to get regular checks to make sure it hasn’t grown back but I’ve been told if it does I will get a heart transplant which is an easier operation. I sent a thank you note and a box of chocolates to the clumsy radiologist who saved my life.

Edit Proof: For the part about the surgery and ECMO: http://imgur.com/WKTEn The clumsy sonogropher's incidental finding: http://imgur.com/QMv2H Some scar photos, I also have a few scars on my neck from the ECMO and a pacemaker scar but they are pretty boring: http://imgur.com/NvQj0 http://imgur.com/wJgAs

TL;DR: Sonographer meant to ultrasound my liver, tripped over his own feet and discovered a heart tumour that would have killed me

Comments: 339 • Responses: 46  • Date: 

cantfry55101 karma

You are very lucky. By the way, a "radiologist" is an MD who reads the scan. A radiology tech is the person who performs the scan.

By the way, Americans think that you can get all the health care you want in Australia for free. Thank you for disabusing them of that notion.

wifeofpoe63 karma

Sorry, you are right, I should have said "sonographer".

Our healthcare system is not the best but not the worst. Medicare pays for most things as does private health insurance. The problem is if Medicare doesn't cover something it is likely your insurance will not either.

daveduckman11 karma

just so you know, you really shouldn't have had to pay for any part of the investigations, hospital care or operations of your hospital stay. Obviously specialist consultations in private rooms are at their discretion and you need to pay for medications (as appropriately subsidised by pbs etc.).

The MRI you paid for almost certainly did not have to be paid for. Presumably you went to a private cardiologist who wanted the scan done promptly and that's why you were out of pocket. I'm a cardiologist and have up until recently worked in melbourne, and the rare few times a cardiac mri has been indicated, it's been easy enough to organise through the public health system. Furthermore this is probably one of the cases that being at a big tertiary public hospital is better than using a smaller attached private facility.

Also "medicare" is only part of the service that covers healthcare, the other significant portion is state-funded public hospitals which cover the full care of patients as per hospital policy rather than as an itemised list.

wifeofpoe3 karma

I was an outpatient when I got the MRI, that may have made the difference. I didn't pay for the hospital stay but my cover had a gap fee for the private ICU over ten days. The rest of the fees as you mentioned were the specialists charging $380-400 an appointment and Medicare and Insurance reimbursing $100 to $200. I was meant to go to the public but they kept canceling so my surgeon said it would be quicker to go through private.

UnexpectedSchism2 karma

Why are serious things excluded? So no one can get a heart condition covered by anything?

wifeofpoe2 karma

I don't think it was excluded because it was serious, its just a rare test that isn't used as often.

Ssutuanjoe19 karma

I'm surprised you haven't received more upvotes for this. This is an awesome story! Talk about a series of (extremely) fortunate events leading up to being treated. That's incredible. If only I had more upvotes to give you!

wifeofpoe21 karma

Thank you. Whenever I complain to my husband about my scars he always reminds me how lucky I am.

wifeofpoe17 karma

Not sure what to give as proof (not that anyone asked). Maybe this? http://imgur.com/QMv2H http://imgur.com/NvQj0 http://imgur.com/wJgAs

yourotherusername14 karma

Glad it worked out for you. I am an American and am scheduled for a lumbar MRI for a possible bulged disc in less than four hours. The cost will be $2100 for the scan and $633 for some one to read it. I am suffering great leg pain for five weeks, it has changed my perspective on life. I have a list of simple things written out to do with my wife and kids when I am pain free again. Include go for walks, play more with my kids, take them on bike rides, and go to the beach and swim with them.

Has this experience changed your outlook on life and your choice of activities?

wifeofpoe12 karma

I guess being cooped up and not able to stand and walk on my own for a while got me to miss the outdoors enough to enjoy it more now. I definately spend more time with my son and husband. I am not as shy as I used to be as with my scars people are always asking me about them so I've gotten used to conversing with strangers.

I can't believe it costs that much for a scan! I will never complain about that $800 again! I hope things work out for you.

yourotherusername3 karma

Yes! To be outdoors would be nice. I stand at work while I can, the rest of my day is spent laying down trying to get comfortable. Drugs only take the edge off right now. Sitting longer than 30 seconds becomes excruciatingly painfull. While the cost is expensive, I have funded my health savings account (it is a type of high deductible insurance) so at least I have the money to do this.

Having never had an MRI before, what's it going to be like?

wifeofpoe4 karma

Its very loud and hard to keep still. The one I had took over an hour and of course my nose itched the whole time. Its not that bad though seriously. It's definately not as horrible as the CT Scan I had where they inject something that makes you feel you have wet yourself.

not_trappedinreddit7 karma

What's your favourite breakfast cereal?

wifeofpoe12 karma

Just Right

doublen00b7 karma

Did you ever say thanks to this guy? Like in person...

wifeofpoe24 karma

Yes. I had an ultrasound done at the same place and he remembered me. He had told his whole family about it and was pretty proud of himself. I gave him a hug afterwards.

doublen00b6 karma

That's good of you.

Obviously the operation has changed your life, are there things you can't do that you miss out on?

wifeofpoe10 karma

I can't wakeboard anymore as I might pull one of the leads of my pacemaker out. My family is really into wakeboarding so it sucks to have to sit on the boat and miss out. Apart from being VERY wary of magnets (I keep a paperclip in my pocket to check), taking antibiotics whenever I go to the dentist and not being able to go through metal detectors, I'm fairly back to normal and can do most things. I used to play the violin and although I can still, it sits over my pacemaker and is uncomfortable so I don't do it often.

StringLiteral5 karma

So is it true about pacemakers and magnets? I work around NMR machines and they have "don't get any closer than this with a pacemaker" signs posted near them, but I figured that that was an exaggeration, like the way people think a magnet anywhere near a computer will destroy it. I suppose even if it is an exaggeration, you don't want to take the risk...

wifeofpoe8 karma

It depends on the strength of the magnet. Any electromagnetic field can cause your pacemaker to act up. Most of these fields are weak and you don't notice. Some cause interference and you have to move away but as soon as you move away it goes back to normal. Strong magnets can cause irreparable damage. I take more precautions than most as I have complete heart block, so if my pacemaker stops working- so do I.

kossdust2 karma

So b/c your pacemaker can stop working do you keep a spare one around? or any other precautions encase something happens to it?

I don't know much about them so sorry if this is not a relevant question.

wifeofpoe2 karma

I have a medic alert bracelet. As long as I can get to a hospital quick smart so they can put a temporary pacemaker in I will be fine. If I'm in the middle of the desert I'm a goner.

doublen00b2 karma

That's a bummer. As someone had a brush with death, did you look back and have regrets about your life? If so did you change?

wifeofpoe10 karma

I had been depressed a lot before the operation but don't feel the same way now. My cardiologist thinks the tumour could have been making me depressed (feeling low because of lack of energy etc). I didn't really change except I try to spend more time with my son as I never know if it may grow back and how much time I'll have with him or I could also get hit by a bus one day. You never know.

[deleted]1 karma

I'm sure there is someone out there who would modify a violin with a notch/hole in it so it doesn't sit on your pacemaker. Or you could take up the cello, they have similar skill sets.

wifeofpoe3 karma

I don't worry about it too much. I get tired playing too long anyway and I was never great at it, just one of many hobbies.

LadyPenyee6 karma

Small small world! I am a cardiac nurse at that hospital and often look after Dr Walkers patients post surgery. This story is amazing and I'll definitely be telling the other nurses when I go into work next. We love stuff like this!

I hope you're doing well and taking care of yourself :)

wifeofpoe7 karma

Actually Dr Walker only took over when Dr Subbiah was away. I only met him twice but he was a sweet man. Are you at the private hospital or the public?

LadyPenyee3 karma

I know dr Subbiah too:) I'm in the private

wifeofpoe6 karma

I was there for the last of my recovery. All the nurses were so lovely. Even when I threw up when they took the wires out of my stomach. They just carried on like it was normal and not at all gross.

LadyPenyee3 karma

It's a great place to work :) vomit is one of the least distressing things we deal with so I find it funny when patients get upset or embarrassed about normal things like that.

Were you on level 6 or 7?

wifeofpoe4 karma

Level 7. I had a private room at the end of the hallway.

LadyPenyee5 karma

lucky, those big rooms are the best.

wifeofpoe7 karma

I felt very lucky since before that I was in the public cardiac ward in a room with three older men. They were lovely but farted all night and kept calling me 'little one'

Veract3 karma

I heard ECMO does something that makes it slowly toxic to your body. Where you coherent at all on ECMO?

wifeofpoe8 karma

I'm not sure. I remember dreaming and I have nightmares sometimes that feel familiar but I don't know for sure. I do have memory loss from the few days leading up to the operation. My mum says I kicked her out of the room when the surgeon was explaining the operation because she was crying, but I don't remember that!

pintastico3 karma

Please please please post your story and any images you have in r/radiology. Thanks!

wifeofpoe2 karma

Done.

InkedNurse3 karma

Wow! That isn't just an "oh she was sick" kind of story, but - DAMN, you seriously are fortunate to have a pulse!.... 2 weeks on ECMO as an adult? Works great on kids, doesn't work nearly as well on adults. I honestly haven't seen very many adults make it off ECMO and live normally. Good on ya!

wifeofpoe2 karma

Thanks. I was on ECMO for a week but my lungs had started to work earlier. I had been taken off well before I woke. I had no idea how scary it was until I saw another person in ICU on the machine.

somewaterytart2 karma

Did you notice anything strange before you found out about it?

wifeofpoe3 karma

Not really. I was out of breath a lot but as I have asthma I put it down to that. A few years ago I would have these terrifying dizzy spells. I went to the hospital and after running a few blood tests and scratching their heads they referred me to a psychiatrist who said I was fine. My GP said it was low blood pressure but could not find the cause so I just ignored it and remembered not to stand up too quickly. I don't fault them for that. There have only been 34 cases of this sort of tumour (or so I've been told) so I doubt it would have crossed their minds.

CaptainAwesome932 karma

What's your favourite part of Sydney?

wifeofpoe2 karma

The Rocks area. It has the best pubs and clubs and the markets on the weekend are really awesome. They often have street art and "pancakes on the rocks" is one of my family's traditions.

Atarashii2 karma

Aussie here, medicare didn't cover it because it was a rare surgery?

wifeofpoe2 karma

Maybe I gave the wrong impression. The surgery was covered by my health insurance (although there was a gap fee). The $800 Cardiac MRI is not covered under Medicare or any private health insurance. I'm not sure why, it is the same MRI machine that is used for other tests.

optionsanarchist2 karma

Are the masses in the liver and the ones in the heart related?

wifeofpoe3 karma

They are both haemangiomas (I know I didn't spell that right!) However the ones in the liver are small and don't appear to be growing so they are leaving them be.

walkingoceans2 karma

I was supposed to go do an ECHO on Monday, but I had to cancel because it turned out to be too expensive. With private insurance, I'd still have to pay $1,250 it. So I decided against it. Hope everything is all right in there.

wifeofpoe4 karma

Is there anyone you can borrow from? Anything you can sell? Do they offer payment plans? Your heart is not something you should ignore.

Vidyogamasta2 karma

You say there was a 3x3x2 / 4x4x3 mass... What is the unit of measurement here??

wifeofpoe3 karma

Centimetres.

Dreddy2 karma

That is amazing and you are very lucky. Reminds me I a similar accidental find with my heart thingy that turned out to be pretty damn scary but it was not anywhere near as scary as your story!

I was at a festival a couple months ago, we just got off a flight from Thailand to Australia at 7am and headed home for about a couple hours and then to the festival (Soundwave Brissie).

I started to have some bad indigestion and decided to ask the medical tent for some Mylanta. They said I had something wrong with my heart and rushed me to hospital. Then the early tests said I had had a heart attack (this stuff in your blood they measure called troponin is at 0.5% for a mild heart attack and mine was climbing to 6%, then 10% then 16%).

Turned out I had Myopericarditus and was put in hospital for a week (mostly because it took them a week to organise my MRI, damn public hospital) and another week at home.

Apparently if you are a young Caucasian male with a nasty stomach bug it can cause a virus that attacks your heart sack bits. I can tell you it was fucking scary being 29 and in the cardio ward with nurses telling you this is serious and "HAVE YOU TAKEN COCAINE?!?!?!" every half an hour.

All they could do was thin my blood and give me Ibuprofen and morphine if it hurt too much. Also got to discover I have such horrific sleep apnea that my brain was only getting 70/80% oxygen while I was on my back.

TL;DR: Bali belly can cause a fake heart attack and I only just missed System Of A Down.

EDIT: forgot my question! I found it strange that they told me how serious and scary it was but took them so long to do/test anything. Was it like this for you? Do you think it would have been a better.quicker outcome if they had have just DONE the damn procedures/tests?

CLARIFY: It was scary because I didn't know it was myopericarditus until towards the end of a week because they took so long to do the tests. There was a major possibility it was a heart attack. I don't story well...

wifeofpoe3 karma

Wow your story is scary! Glad your okay now. As to your question I think it would have been a better outcome if they had done something earlier as I would not have had problems with my lungs by then and wouldn't have had to go on ECMO. Also the tumour would have been smaller and I might not have needed a pacemaker. But 'what ifs' don't really help in the long run, I'm alive now, that's all that matters.

appletart2 karma

Amazing! What we really need to see now is you smiling again! All the best in the future! :o)

wifeofpoe3 karma

Here is me smiling with my son

imgur.com/ombOu

idefiler62 karma

Now you must marry the clutzy radiation tech.

wifeofpoe6 karma

I was already married. He is clumsy too though so he may still save my life yet

Dinosaur_McGinley2 karma

Proof?

wifeofpoe5 karma

What kind of proof would you like? I have a few pictures of scars and the first "incidental" finding posted earlier:

http://imgur.com/QMv2H http://imgur.com/NvQj0 http://imgur.com/wJgAs

If you would like anything else, please let me know.

wifeofpoe4 karma

Does this help? Sorry about the shitty photo: http://imgur.com/WKTEn

Magic_toenail2 karma

What brand is your pacemaker?

wifeofpoe1 karma

Medtronic. One of the MRI safe ones.

[deleted]2 karma

interesting! i have had pain over my liver area the last couple of years and with ultrasounds and blood tests coming back "normal" its really frustrating. did they ever link the pain with the area around the liver to the heart condition?

wifeofpoe1 karma

No, the pain over my liver was shingles. I got the rash the day after the ultrasound. If I had got the rash earlier my GP wouldn't have bothered wih the ultrasound so it was lucky! Sorry to hear about your pain. Hopefully they will figure it out for you.

ryashpool1 karma

Hi Op,

Any chance you can clear up a few things? What was your total out of pocket costs for this whole issue? How far away from Melbourne are you? In miles/km?

wifeofpoe3 karma

All up around $2000, that's the MRI, gap fee for the ICU stay and gap from the Drs appointments. My cardiologist likes to remind me that I have a pacemaker lead that is worth around $10k that I got for free (it's a prototype) instead of the normal one so I'm really happy about the costs considering!

Melbourne is in another state as I live in Sydney. I think it's about 900kms away. Why?

IAMHab1 karma

That's incredible; I'm happy for you. Were you and/or your family religious before any of this happened? What about afterwards?

wifeofpoe2 karma

No we have never been a religious family and that hasn't changed. My mother may have prayed but I believe that was more out of comfort and because she felt helpless about it more than anything else.

Cactrot1 karma

My question is are you sure it was a radiologist that did your ultra sound? I work in healthcare and where I'm from ultrasound techs do ultrasounds, not rads. The rads do review the images after the fact though.

wifeofpoe2 karma

Yes, sorry. Someone pointed that out earlier. It was a sonographer not a radiologist.

jtothegill1 karma

how old do you have to be to have medicare in australia?

wifeofpoe2 karma

When your children are born you send their birth certificate to Medicare and they get put on your card. But I believe they are covered before that anyway that just makes it official

SHITKEEPSFALLING1 karma

You're in Australia? What were your medical bills besides the $800 heart MRI, if you don't mind me asking.

Congrats on pulling through!!

wifeofpoe2 karma

There was a gap fee for the ICU stay and quite a few specialist appointments. It all added up to around $2000 but they were paid at different times so it wasn't so bad.

mojokabobo1 karma

Medicare is called medicare in australia too? (I'm from U.S.)

wifeofpoe3 karma

Yes

Lord_Osis_B_Havior1 karma

For the curious, here's what the MRI looked like: http://en.wikipedia.org/wiki/File:Myxoma_CMR.gif

The top left image is amazing how the myxoma squishes in and out of the two heart sections.

Here's what a myxoma looks like (don't click if you're squeamish): http://en.wikipedia.org/wiki/File:Myxoma.jpg

Good work surviving, OP!

wifeofpoe2 karma

It turned out to be a hemaengioma not a myxoma but I'm sure they are similar! Thanks for the pics.

KakaGauruotas1 karma

The transducer moved to over my heart

You mean he "accidentaly" touched your boob, right? :D

wifeofpoe3 karma

I was lying flat so if he was he missed!

OCELLARIS_CLOWNING1 karma

Awesome. My grandpa had a quintuple bypass (I didn't even know that was a thing) and they took veins from both of his legs. Nice read, and good luck!

wifeofpoe1 karma

Wow! I hope he recovered well. Modern medicine is truly amazing!

sayge1 karma

Lulz, you got sent to Dr. Phil.

On a serious note, thats quite the story! Looking back, how do you feel about it taking relatively long for you to get treatment, considering your declining health at the time?

wifeofpoe4 karma

Considering it was pretty rare, I'm astonished it ever got found out. I have heard of horror stories about people waiting for surgeries so considering it was first found in February and I had the surgery in June, I consider myself pretty lucky. I did have to really push the Doctors. I had to call my cardiologist frequently to get things done. If it wasn't for the tumour sending blood clots to my lungs I could be still waiting. Of course if those blood clots had gone to my brain instead I might feel differently.

mr_silenus1 karma

Have the rules changed? I didn't pay for my MRI.

wifeofpoe2 karma

Was it a Cardiac MRI? If so did it have an item number?

mr_silenus1 karma

No it was a head MRI. Don't remember about the number. I thought if you get referred from a GP (or another doctor?) the MRI is covered or at least partially covered by Medicare.

wifeofpoe3 karma

Most MRIs are covered. Cardiac MRIs are not, not even partially.