Local Care After Surgery at Hours Away Hospital

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rich01

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One thing I worry about and don't remember seeing anything about it is what if you have an urgent/emergency event that requires you go to the hospital, and the hospital that did the valve replacement is hours away? Did you have a local cardiologist that was up-to-speed on your condition? Did you have paperwork to take to ER with you? Any ideas appreciated.
 

Protimenow

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A few ideas, Rich:

MedicAlert is supposed to have a link that emergency or hospital employees can call when you're disabled. This link connects to a service that keeps track of any information that you update. I've never tried this, but it sounds like a pretty good idea.

If you've got a mechanical valve, you are probably carrying a card that describes your valve. Maybe the manufacturers could align with a company that can provide more medical information (if the user knowingly participates and acknowledges that there's permission to use and distribute the data to approved individuals)

Another idea is to keep a small flash drive on a bracelet, or on a necklace. The drive would be marked, prominently on the outside that you take Coumadin, and may say that medical and contact information are stored on the drive. If this became recognizable, and possibly standard for millions of people who need it, this may become a way to inform emergency workers of your contact information and medical history.
Of course, this would have to be highly encrypted - and perhaps can be unlocked using a fingerprint or other unique identifier that can be used by the emergency people if you are incapacitated.

Or - access to a central repository of your information could be opened only using a permanent digital 'key' encoded into your specific drive. Without the key, all data would be scrambled and inaccessible. This 'key' would presumably be useful if you are disabled and unable to use it, or if you are stable enough to use it to unlock your data.

(hey - maybe I'm in the wrong business)

FWIW - some developers tried to use a flash drive, with a strange app, to retain your personal medical and contact information a few years ago. This venture apparently sunk like a rock. Maybe a new, superior, universal approach would have a better chance now -- but there is always fear of privacy breaches.

Anyway, Rich - these are a few ideas.
 

Duffey

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I went home with instructions from the hospital, 100 miles away, on how to contact the cardio-thoracic ward if anything came up. The second night at home, my incision began to ooze a little bit of blood. We called the St. Louis hospital as instructed and were able to talk to the doctor on duty. They said the bleeding wasn’t unusual but if it continued and we were concerned, they, cardio-thoracic staff, would contact the local hospital’s ER and consult with them. The bleeding stopped and I had no further problems. I imagine that most hospitals that do valve replacements have a plan in place for their long distance patients once they’re discharged.
 

LondonAndy

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I agree with Protimenow's suggestion of the MedicAlert bracelet or necklace idea, which contains key points engraved on the item and then a number to call 24 hours a day for additional details. Paramedics look for such products and I think better than a card in a wallet or handbag - a friend who had critical notes for an unrelated medical condition in her bag found that they were not looked at when she collapsed whilst out shopping and was taken into hospital unconscious.

However, here in the UK I am used to poor communication between hospitals and local doctors, so I scanned in a copy of my hospital discharge notes and always take them with me when going to a new hospital or emergency room etc - fortunately this doesn't happen often!

I am not sure the USB drive would be particularly helpful though - sadly the stupid people who create computer viruses have made most organisations very wary of plugging such things into their networks.
 

Duffey

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One thing I worry about and don't remember seeing anything about it is what if you have an urgent/emergency event that requires you go to the hospital, and the hospital that did the valve replacement is hours away? Did you have a local cardiologist that was up-to-speed on your condition? Did you have paperwork to take to ER with you? Any ideas appreciated.
You’ll have a cardiologist. The hospital will not release you without one.
 

rich01

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You’ll have a cardiologist. The hospital will not release you without one.
I don't understand. Which hospital? I already have a cardiologist at the hospital where hopefully I will have the valve replaced. What I want to know is if I have a heart problem after the valve is replaced, maybe or maybe not related to the valve, how do I ensure the local hospital knows about my valve replacement?

One thing I read recently has to do with the alignment of the valve when having TAVR. If I understood the article correctly, accessing the heart might be more challenging after TAVR. When having SAVR, the valve is perfectly lined up, but not with TAVR.
 

Duffey

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I don't understand. Which hospital? I already have a cardiologist at the hospital where hopefully I will have the valve replaced. What I want to know is if I have a heart problem after the valve is replaced, maybe or maybe not related to the valve, how do I ensure the local hospital knows about my valve replacement?

One thing I read recently has to do with the alignment of the valve when having TAVR. If I understood the article correctly, accessing the heart might be more challenging after TAVR. When having SAVR, the valve is perfectly lined up, but not with TAVR.
If you’re currently seeing a cardiologist at the hospital where you’ll have the TAVR then all your records will be in their computer system. All tests that you undergo previous to replacement. You should be able to access your records now via a site called Mychart. Ask your cardiologist about it.
 

rich01

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If you’re currently seeing a cardiologist at the hospital where you’ll have the TAVR then all your records will be in their computer system. All tests that you undergo previous to replacement. You should be able to access your records now via a site called Mychart. Ask your cardiologist about it.
Let me give an example. I have my valve replaced at a hospital 3 hours away from home. Some time after that, I have some type of cardiac event and ER takes me to the local hospital. Let's also assume I am not able to effectively communicate.

How do I make sure that the local hospital knows that I have a replacement heart valve? It seems to me there should be a standard procedure for this.
 

tom in MO

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Let me give an example. I have my valve replaced at a hospital 3 hours away from home. Some time after that, I have some type of cardiac event and ER takes me to the local hospital. Let's also assume I am not able to effectively communicate.

How do I make sure that the local hospital knows that I have a replacement heart valve? It seems to me there should be a standard procedure for this.
Usually you tell them you have a replacement valve or your family tells them.

Even if you can't tell them, the big scar on your chest will tell them you had OHS and if you have a mechanical valve, the ticking when they listen to your chest will tell them.

Your local hospital should have standard practices to handle patients with cardiovascular problems that can't communicate. Even if they know your cardiologist, if you are in an emergency situation they will get their in-hospital cardio first.

Some people carry a medical alert card in their wallet. I do. Made it myself since the commercial ones are too big. It says I have a mechanical valve, my INR is 2-2.5 and lists my medications.
 

Protimenow

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I don't have a MedicAlert (or whatever they call it) acount. The thing I have around my neck should be thrown away - wrong phone number for emergency contact. Having a clearly visible MedicAlert (or maybe others) on your body, where it can be clearly seen (a bracelet, a pendant on a necklace, with a large MedicAlert logo) should be useful by providing a contact that can be used to get your medical information. I'm not sure about how useful a card in a wallet will be if a) they remove your clothes when starting to treat you and don't think to look for a wallet or b) it's soaked with urine or blood (if you printed your card with an inkjet printer, in this case, the information on the card may be smudged or unreadable).

At this point, although I didn't drink my own KoolAid, I'm thinking that a MedicAlert (or maybe another service that provides the same 24/7 coverage) item may be the best, most universally recognized, way to go.

One other option - perhaps - is an electronic device like the ones that they put into dogs so they can be identified when they're found. This device should be able to hold enough information that you can be identified, an information repository or relative can be called, and a history retrieved. Of course, this would involve getting the thing programmed and implanted, and the medical personnel identifying it and having a device to read it with. Identifying it can be easy -- get some big arrows tattooed on your arm (or wherever the thing is implanted) pointing to it (yeah, I may be joking about the tattoo).

If it wasn't for fear of viruses and other nasty things an a small USB drive worn around the neck, a USB drive with history and contact information would be useful.

Finally, I hope - is the use of a QR tag, printed, laminated, and attached to a necklace or something on your wrist. QR tags are the tags that now appear online, and sometimes on product packaging, and sometimes in items in stores (for more information, scan this). Most cellphones can read QR tags. YOUR tag can have a link to your information, and may hold enough data for some basic information without providing a link. I'll look into how much information can be put into a QR tag. EMTs and hospitals should be able to easily read the QR tag.
 

Duffey

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Usually you tell them you have a replacement valve or your family tells them.

Even if you can't tell them, the big scar on your chest will tell them you had OHS and if you have a mechanical valve, the ticking when they listen to your chest will tell them.

Your local hospital should have standard practices to handle patients with cardiovascular problems that can't communicate. Even if they know your cardiologist, if you are in an emergency situation they will get their in-hospital cardio first.

Some people carry a medical alert card in their wallet. I do. Made it myself since the commercial ones are too big. It says I have a mechanical valve, my INR is 2-2.5 and lists my medications.
He isn’t having OHS, he’s hoping for a TAVR, Tom in MO. Something you should inquire about, rich01, when you have it done and let the rest of us know. Good luck!
 

rich01

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Let me give an example. I have my valve replaced at a hospital 3 hours away from home. Some time after that, I have some type of cardiac event and ER takes me to the local hospital. Let's also assume I am not able to effectively communicate.

How do I make sure that the local hospital knows that I have a replacement heart valve? It seems to me there should be a standard procedure for this.
I had an appointment with cardiologist at hospital where I hope to have TAVR - 2 hours from home. I asked if I should have a local cardiologist who would have my records and be up to speed on my illness. He strongly recommended it.
 
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