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Riceman1982

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Joined
Mar 23, 2020
Messages
9
Hi all I’m ian 37 year old from England I had heart surgery in September 2016 after having endocarditis.im on warafin fluesmide and few other tablets I’m enjoying reading this group I have lot of anxiety’s attacks thinking about CorOna lately I have notice my valve sounds louder when ticking also here a gurgling sound I’m worried about but is that normal .went to hospital Saturday night they did all my bloods and echo gram eberyt was fine.but didn’t do the prodecure with jelly on.a year ago I was told my valve not opening proper,y as should but there watch me a yearly appointment has anyone else experience this? I’m worried about a lot stuff to many thanks
 

Riceman1982

Member
Joined
Mar 23, 2020
Messages
9
It’s on the side of the valve. Just take a look. ;)
I kid! I kid!!

Typically this is discussed in advance with your medical team. However many manufacturers will also send out a medical ID card later. St Jude sends one that includes a serial #, MRI information, etc.
are Try find paper work had mine in st barts London uk
 

dick0236

Eat the elephant one bite at a time
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Feb 10, 2007
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3,040
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louisville, KY USA
are Try find paper work had mine in st barts London uk
It is a very good idea to carry the valve ID card on your person in the event of an accident, etc. The hospital or surgeon should have the model and the serial number of your valve in your file. Contact the valve manufacturer to make sure they have you and your valve in their records "just in case" (recall or other need to contact you). They will also send you a card that you can carry.
 

Riceman1982

Member
Joined
Mar 23, 2020
Messages
9
Thank you mate yeah was I’ll for ages till they found out what it was
welcome aboard riceman

Good to have ya (well, rather than have lost ya to endo)

Things are not as bad as you may be led to believe, so basically its all good :)
 

Riceman1982

Member
Joined
Mar 23, 2020
Messages
9
Same but coronavirus slowed it down now .cant get appointment I was in hospital weekend said my bloods where ok I dunno if they know from That
 

LondonAndy

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Aug 1, 2015
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I don't know if other Brits on this site can confirm, but UK hospitals seem not to provide much information about which valve they insert, and do not provide a valve ID card. Not sure if this is because we have a national health system that lays down a standard, or just not seen as important? It was about 3 or 4 years after surgery that I asked my Cardiologist what valve I had, though I was admitted as an emergency case so perhaps that makes my experience different.

Anyway, welcome Ian! I would say as long as you are not experiencing shortness of breath then try not to focus on your valve. Even if there is some regurgitation, that is not usually immediately a problem - I don't know if others would agree with this analogy, but perhaps think of it as having a 12 cylinder engine where one of the valves is not firing - the car still runs pretty well, and can continue to be driven until the next service if need be! If you can avoid going to a hospital whilst the Coronavirus thing is messing things up, that would be sensible.

I had my valve done at the London Heart Hospital in 2014, which closed soon thereafter (hope it wasn't me!) and many of the excellent staff moved to Barts, as well as the care of patients. Barts is a world leading heart centre, so you are in good hands there and they have fantastic facilities as you will obviously know.

PS: the "procedure with a jelly" is an ultrasound, and that seems to be one of the best ways of examining the workings of a valve. If you do have actual difficulties then worth pushing for them to do that one.
 

Riceman1982

Member
Joined
Mar 23, 2020
Messages
9
I don't know if other Brits on this site can confirm, but UK hospitals seem not to provide much information about which valve they insert, and do not provide a valve ID card. Not sure if this is because we have a national health system that lays down a standard, or just not seen as important? It was about 3 or 4 years after surgery that I asked my Cardiologist what valve I had, though I was admitted as an emergency case so perhaps that makes my experience different.

Anyway, welcome Ian! I would say as long as you are not experiencing shortness of breath then try not to focus on your valve. Even if there is some regurgitation, that is not usually immediately a problem - I don't know if others would agree with this analogy, but perhaps think of it as having a 12 cylinder engine where one of the valves is not firing - the car still runs pretty well, and can continue to be driven until the next service if need be! If you can avoid going to a hospital whilst the Coronavirus thing is messing things up, that would be sensible.

I had my valve done at the London Heart Hospital in 2014, which closed soon thereafter (hope it wasn't me!) and many of the excellent staff moved to Barts, as well as the care of patients. Barts is a world leading heart centre, so you are in good hands there and they have fantastic facilities as you will obviously know.

PS: the "procedure with a jelly" is an ultrasound, and that seems to be one of the best ways of examining the workings of a valve. If you do have actual difficulties then worth pushing for them to do that one.
Thanks londonandy yes I will do once this is clear thanks for the information has my mind feel better I have but of pain under my neck also swallowing might be tonsillitis I do not know haven’t got a cough or nothing .also my legs get hot abit sometimes dunno if that’s apart of being on warafin and flusomide anyway thank you for your response
 

Seaton

Well-known member
Joined
May 13, 2015
Messages
386
Location
London, UK
I don't know if other Brits on this site can confirm, but UK hospitals seem not to provide much information about which valve they insert, and do not provide a valve ID card. Not sure if this is because we have a national health system that lays down a standard, or just not seen as important? It was about 3 or 4 years after surgery that I asked my Cardiologist what valve I had, though I was admitted as an emergency case so perhaps that makes my experience different.
Greetings @LondonAndy. Hope all good for you in lockdown London! At least the glorious spring sun doth shine 🌞

The only info I got about my valve post surgery, from St Thomas’ Hospital, was on my discharge papers. It said:

“Minimally invasive Aortic valve replacement (Tissue) via mini sternotomy 4th intercostal space J incision. (23mm Edwards.)”​

So I got the size and the company make but not the specific valve type. Fortunately I already knew the valve type, as my surgeon had said (when I asked) he’d be using an Inspiris Resilia if I went tissue.

I was given no instruction on how to get an ID ’card’ from Edwards. I did that proactively myself after Anne (@Paleowoman) said I should contact Edwards in the US directly. I did this online through their site after first contacting my Cardiac nurse at St Thomas’ to get the valve’s serial number.

Edwards eventually sent me the paperwork with a little credit card shaped piece of card attached with my name on, date of implant, surgeon’s name, hospital name, model number, serial number and valve type name (Inspiris Resilia) and position (aortic). [see image]

It was all printed on a thin piece of card, which I thought a bit cheap as it would probably deteriorate rather quickly in a wallet. So I photographed it and sent it away to an online printers (a bit expensive), where the image was transferred to a credit card size piece of plastic. Image printed OK and seems to do the job!


887346
 

dick0236

Eat the elephant one bite at a time
Joined
Feb 10, 2007
Messages
3,040
Location
louisville, KY USA
Greetings @LondonAndy.

The only info I got about my valve post surgery, from St Thomas’ Hospital, was on my discharge papers. It said:

“Minimally invasive Aortic valve replacement (Tissue) via mini sternotomy 4th intercostal space J incision. (23mm Edwards.)”​

So I got the size and the company make but not the specific valve type. Fortunately I already knew the valve type, as my surgeon had said (when I asked) he’d be using an Inspiris Resilia if I went tissue.

I was given no instruction on how to get an ID ’card’ from Edwards. I did that proactively myself after Anne (@Paleowoman) said I should contact Edwards in the US directly. I did this online through their site after first contacting my Cardiac nurse at St Thomas’ to get the valve’s serial number.
Some hospitals in the US do provide good info about obtaining a permanent ID card from the valve supplier.........some don't. Some do provide a handwritten paper card......some don't. Some will forward your info to the manufacturer of your valve.......some don't. I encourage each of you to make sure your info has been sent to your valve manufacturer for recording in a "PERMANENT FILE" in the event the manufacturer must get in touch with you in the future......and ask the manufacturer to send you a permanent ID card.

I was turned down for an "imaging procedure" a few years ago because the hospital was unsure about the safety of the test with my mechanical valve.....and they were upset with me because I wasn't carrying an ID card.......I don't think they even issued ID cards or assigned serial numbers when I had the surgery.......if so, I never got one......and it was 42 years before I needed a card. After several months and a lot of help, Edwards (the manufacturer of my old Starr-Edwards valve) sent me my ID card. Funny:unsure: thing is the card identifies my valve model as......UNK-StarrEW and serial no. as.......UNK-178. I think the "UNK" stands for "unknown" which is not reassuring.......

Note to Seaton....my card looks exactly like yours except it is plastic......I guess they went to paper cards to save money:rolleyes:.
 
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tom in MO

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Joined
Jan 17, 2012
Messages
1,406
Location
MO USA
Some hospitals in the US do provide good info about obtaining a permanent ID card from the valve supplier.........some don't. Some do provide a handwritten paper card......some don't. Some will forward your info to the manufacturer of your valve.......some don't. I encourage each of you to make sure your info has been sent to your valve manufacturer for recording in a "PERMANENT FILE" in the event the manufacturer must get in touch with you in the future......and ask the manufacturer to send you a permanent ID card.

I was turned down for an "imaging procedure" a few years ago because the hospital was unsure about the safety of the test with my mechanical valve.....and they were upset with me because I wasn't carrying an ID card.......I don't think they even issued ID cards or assigned serial numbers when I had the surgery.......if so, I never got one......and it was 42 years before I needed a card. After several months and a lot of help, Edwards (the manufacturer of my old Starr-Edwards valve) sent me my ID card. Funny:unsure: thing is the card identifies my valve model as......UNK-StarrEW and serial no. as.......UNK-178. I think the "UNK" stands for "unknown" which is not reassuring.......

Note to Seaton....my card looks exactly like yours except it is plastic......I guess they went to paper cards to save money:rolleyes:.
Dick, your valve is so old, it was a "new" thing when implanted :) They may not have had requirements to track them or give a serial number. If UNK means unknown, 178 could mean you were the 178th patient to ask for a card.

Eight years ago I was given a card and told to carry it primarily in case I ever need an MRI. The card gives a site where a MRI technician can get information about the valve. My card is plastic too.
 

OldManEmu

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Jul 18, 2005
Messages
959
Location
Melbourne, Australia
I was given a hand written card after both my surgeries. The card looked like it came with the valve because it had the manufacturers name and valve model printed on it and the surgeon filled the details (his name, my name, date etc) on the day. A few weeks later I was mailed a permanent card from the manufacturer. The first Medtronic valve was a plastic credit like card and the Edwards was the same as Seatons photo.

The Medtronic card was useless anyway because the valve was listed as Mitral, which it was as far as the manufacturer was concerned however it was used in the Aortic position in me. The difference is in the sewing cuff. I contacted the surgeon and he said this was not unusual to do as 29mm isn't a common Aortic valve size. It was used because they didn't have a 29mm Aortic on hand which was the optimum size valve for me.
 
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