my time has come

[pekster11]

Thanks Pan !

Yes the surgeon said he was going on what he saw on the CT scan, but things could change once they opened me up.

The widest diameter measured on my ascending aorta was 5.2cm. The arch was something like 4.3cm, as I remember.

I'll let you know about my experience during and post Op at Liverpool HCH. It is supposedly one of the best cardio centres in the UK.

I bough the INR meter myself, knowing I was going for a mechanical valve. I still need to ask my local GP if they will supply me testing strips on prescription.

You mentioned getting the OK about your teeth. Yes, that was one of the first things the cardiac specialist nurse said I needed to do.

After that I had a CT scan at Manchester Royal Infimary, to see if I needed my coronary arteries doing at the same time

Think, I met one of the surgeons after that, then another surgeon before lockdown.

The CT scan I had at Liverpool HCH about 3 weeks ago was to see the valve and ascending aorta etc in detail in preparation for surgery. Met another surgeon yesterday to talk about that

That was the list of things that happened before being signed off so to speak for surgery. I suspect you will go down a very similar route

 

[PAN]

Hi Pekster

Thanks for the details and the sequence of events so far. You are right LHCH is supposed to be excellent. My experience there so far has been very good. Hopefully it continues

Interesting that you have seen more than one surgeon. They will all be there on the day? I'll be interested to know who is doing what parts of the operation.

I'll have a look at other UK patients experiences with INR meters. I thought they were available through the NHS? If not I'll have to buy one as you have and get that graph started.

Last night I read through some posts from 2012 ish. A user called The GYM Guy (?). He aslo had valve ascending and hemiarch and was back lifting weights after 4 weeks. Really inspirational stuff. I'm looking forward to walking, jogging then running after surgery.

All the best,

P

 

[pekster11]

Still no Opp date !
I got my letter today following the meeting with one of the surgeons in July.

They will have to do the aortic valve, ascending aorta, and the hemiarch...giving me a 3% mortality risk apparently

I also have according to the letter, a 2-3% stroke risk

 

[carolinemc]

Thanks Pan !

Yes the surgeon said he was going on what he saw on the CT scan, but things could change once they opened me up.

The widest diameter measured on my ascending aorta was 5.2cm. The arch was something like 4.3cm, as I remember.

I'll let you know about my experience during and post Op at Liverpool HCH. It is supposedly one of the best cardio centres in the UK.

I bough the INR meter myself, knowing I was going for a mechanical valve. I still need to ask my local GP if they will supply me testing strips on prescription.

You mentioned getting the OK about your teeth. Yes, that was one of the first things the cardiac specialist nurse said I needed to do.

After that I had a CT scan at Manchester Royal Infimary, to see if I needed my coronary arteries doing at the same time

Think, I met one of the surgeons after that, then another surgeon before lockdown.

The CT scan I had at Liverpool HCH about 3 weeks ago was to see the valve and ascending aorta etc in detail in preparation for surgery. Met another surgeon yesterday to talk about that

That was the list of things that happened before being signed off so to speak for surgery. I suspect you will go down a very similar route

On your teeth, they always insist on a exam to make sure the gums are not infected. Good thing to do so if there are problems, it can be fixed before surgery. And on the Arteries, they need to check and make sure they are not clogged. Sounds like you are at the best place in the UK. Good luck and keep us updated.

 

[Stevebav]

Hi
You may find my operation experience encouraging. I had moderately stenosed BAV replaced along with root and ascending aorta graft at Harefield on 25 July. I was discharged on 29 July and am now walking 30 minutes at a time. I'm 56 so not pushing myself in any way.
I chose tissue as valve expected to last up to 20 years, and transcatheter replacement techniques/technology is clearly almost here. My aorta was 5.3cm and the new valve 29mm diameter. The need for root replacement was confirmed at the MRI CT Scan performed 3 weeks prior to surgery. I was pretty much asymptomatic up to ~6 months prior when BP started to rise and breathlessness on exhertion was obvious. I didn't have any other medical conditions.

Like you I read up the percentages - biggest risk seems to be aFiB being triggered by the surgery that might lead to pacemaker being needed.

Fingers crossed your op and early recovery go as well as mine have!

Steve

 

[Mister_James]

20 year tissue valve...i hope it lasts that long.
Afib may pop up occasionally but it is a pretty common experience. After my surgery, with anxiety and all that I would run to the doctor. Now I can ignore it until the heart wisens up and gets back into rhythm.

 

[slipkid]

Hi
You may find my operation experience encouraging. I had moderately stenosed BAV replaced along with root and ascending aorta graft at Harefield on 25 July. I was discharged on 29 July and am now walking 30 minutes at a time. I'm 56 so not pushing myself in any way.
I chose tissue as valve expected to last up to 20 years, and transcatheter replacement techniques/technology is clearly almost here. My aorta was 5.3cm and the new valve 29mm diameter. The need for root replacement was confirmed at the MRI CT Scan performed 3 weeks prior to surgery. I was pretty much asymptomatic up to ~6 months prior when BP started to rise and breathlessness on exhertion was obvious. I didn't have any other medical conditions.

Like you I read up the percentages - biggest risk seems to be aFiB being triggered by the surgery that might lead to pacemaker being needed.

Fingers crossed your op and early recovery go as well as mine have!

Steve

Good luck with your valve. I had my Aortic valve replaced as part of an emergency situation (OHS with double bypass) with no foresight discussion or research about which type of valve to choose, but the surgeon expressed total shock and disapproval when I answered his question...actually was rather humorous, went like this..

I had heart attack and passed out at work. Woke up about when loaded into the ambulance. At hospital was told I was having heart attack, somewhat stabilized but still infacting, taken to cath lab, passed out during the start of the cath procedure (was told days later my heart stopped), was taken up to surgery, passed out woke up and white haired gent was hovering over my face (turned out to be the surgeon) and we had this conversation:

Surgeon: "Do you want an animal valve or a mechanical valve?"

Me: "whaa..what?"
(For all I knew I was face to face with God at that point, I was laying there dying after all)

Surgeon: "Do you want an animal valve or a mechanical valve?"
(No explanation, no info, I had no idea even what he was talking about)

Me: "What's the difference?"
(figuring better to not even ask what he was talking about and instead just get an A vs B comparison to make a somewhat informed decision)

S: "With a mechanical valve you will have to be on warfarin for the rest of your life"
(I was 58 at the time btw. Had no idea of what implications of being on warfarin were or the entanglements with INR and clotting factor times etc only knew I don't ever want to be on ANY medication at all if I have the choice, and that it was some kind of blood "thinner")

Me: "Give me the animal valve then"

S (looking surprised and aghast that I would make such a decision):
"BUT WE DON'T GIVE ANIMAL VALVES TO SOMEONE YOUR AGE!"

Me'; "Then why did you ask me?"

S: "Because you need to make the decision".

Me: "Do whatever you want or ask my sister"
(I had a sister who has experience with this stuff, used to be a nurse, and she was en route to the hospital although hours away)

I closed my eyes. Fell asleep or passed out, who knows. Was awakened a few minutes later by Surgeon again..

S: "You need to make a decision - what kind of valve do you want?"

M: "I don't care. I think I'm dying. Give me whatever anybody wants to give me".
Closed my eyes.& woke up a day or so later in intensive care.

Was in the hospital I think 10 days. Quite an experience. Slowly got my strength back over the next couple months. Not really able to walk too well until at least 2 weeks or more I guess.

Point of that story above is that, and I was told more later in talking to surgeon & cardiologist, that if you're "young" (to them I think it meant under 60) they don't want to give you an animal valve because they believe they will start to deteriorate in 5-10 years (?). I wonder if somehow that technology changed? Do animal valves last longer now??

P.S. They gave me a mechanical valve.

 

[Stevebav]

Good luck with your valve. I had my Aortic valve replaced as part of an emergency situation (OHS with double bypass) with no foresight discussion or research about which type of valve to choose, but the surgeon expressed total shock and disapproval when I answered his question...actually was rather humorous, went like this..

I had heart attack and passed out at work. Woke up about when loaded into the ambulance. At hospital was told I was having heart attack, somewhat stabilized but still infacting, taken to cath lab, passed out during the start of the cath procedure (was told days later my heart stopped), was taken up to surgery, passed out woke up and white haired gent was hovering over my face (turned out to be the surgeon) and we had this conversation:

Surgeon: "Do you want an animal valve or a mechanical valve?"

Me: "whaa..what?"
(For all I knew I was face to face with God at that point, I was laying there dying after all)

Surgeon: "Do you want an animal valve or a mechanical valve?"
(No explanation, no info, I had no idea even what he was talking about)

Me: "What's the difference?"
(figuring better to not even ask what he was talking about and instead just get an A vs B comparison to make a somewhat informed decision)

S: "With a mechanical valve you will have to be on warfarin for the rest of your life"
(I was 58 at the time btw. Had no idea of what implications of being on warfarin were or the entanglements with INR and clotting factor times etc only knew I don't ever want to be on ANY medication at all if I have the choice, and that it was some kind of blood "thinner")

Me: "Give me the animal valve then"

S (looking surprised and aghast that I would make such a decision):
"BUT WE DON'T GIVE ANIMAL VALVES TO SOMEONE YOUR AGE!"

Me'; "Then why did you ask me?"

S: "Because you need to make the decision".

Me: "Do whatever you want or ask my sister"
(I had a sister who has experience with this stuff, used to be a nurse, and she was en route to the hospital although hours away)

I closed my eyes. Fell asleep or passed out, who knows. Was awakened a few minutes later by Surgeon again..

S: "You need to make a decision - what kind of valve do you want?"

M: "I don't care. I think I'm dying. Give me whatever anybody wants to give me".
Closed my eyes.& woke up a day or so later in intensive care.

Was in the hospital I think 10 days. Quite an experience. Slowly got my strength back over the next couple months. Not really able to walk too well until at least 2 weeks or more I guess.

Point of that story above is that, and I was told more later in talking to surgeon & cardiologist, that if you're "young" (to them I think it meant under 60) they don't want to give you an animal valve because they believe they will start to deteriorate in 5-10 years (?). I wonder if somehow that technology changed? Do animal valves last longer now??

P.S. They gave me a mechanical valve.

Hi,
I feel for you (and anyone) who arrives here through the Emergency route - at least I had time to come to terms with my situation- and your decision scene does sound a little 'monty python'.
On valves, it's clearly a very individual decision and every one is different. My understanding was, as your surgeon said, anyone under 60-65 was considered young enough to outlive tissue valve and so majority would be advised mechanical route.
There have clearly been developments in tissue valve technology over the last few years that have encouraging results so far, but the latest valves have not been in use long enough for meaningful statistics. My surgeon said that tissue was a 'reasonable' choice for me and observed, unprompted, that by the time it needs replacing transcatheter replacement technology would have improved considerably over next ten years or so and having tissue valve in place provides solid site to locate 2nd valve into.
My valve is an Edwards Perimount that began being used in late 1980's and so has over 30 years of statistics - 20 yrs is optimistic but definitely within realms of possibility, 10 - 15 is where I'm setting my sights.
you don't say how recently your OHS was ?

 

[charlottekaye]

Your story amazes me because you went so long with a tissue valve. Tissue valves most certainly deteriorate. Did you have a BAV?

 

[slipkid]

Hi,
I feel for you (and anyone) who arrives here through the Emergency route - at least I had time to come to terms with my situation- and your decision scene does sound a little 'monty python'.
On valves, it's clearly a very individual decision and every one is different. My understanding was, as your surgeon said, anyone under 60-65 was considered young enough to outlive tissue valve and so majority would be advised mechanical route.
There have clearly been developments in tissue valve technology over the last few years that have encouraging results so far, but the latest valves have not been in use long enough for meaningful statistics. My surgeon said that tissue was a 'reasonable' choice for me and observed, unprompted, that by the time it needs replacing transcatheter replacement technology would have improved considerably over next ten years or so and having tissue valve in place provides solid site to locate 2nd valve into.
My valve is an Edwards Perimount that began being used in late 1980's and so has over 30 years of statistics - 20 yrs is optimistic but definitely within realms of possibility, 10 - 15 is where I'm setting my sights.
you don't say how recently your OHS was ?

April 2014.

Good points by you above. And I especially like The Monty Python reference.

In many ways I am glad it all just kind of happened with no time to fret over it, as I would have been freaking out at the prospect of having to have open heart surgery.

That being said I was having really scary completely out of breath situations for months which I had been seeing a (quack) Dr about who totally misdiagnosed me as suffering from asthma or COPD, who put me on some godawful drugs that only made me feel worse, and when he told me "let's try prednisone" (a drug I was already very familiar with and well aware of its dangers) I told him to 4get it that I was "feeling better" and made a mental note to try to see a different Dr or have my heart checked like one of my sisters was urging me to do, but the heart attack happened b4 I did that...

 

[pekster11]

update

still waiting for the op
Liverpool HCH had a Covid outbreak recently, and some elective surgeries were put on hold again.

doubt i'll be getting it done before xmas now

 

[PAN]

Sorry to hear that.. Hope you are doing ok and the valve isnt holding you back too much.

I was given an option recently for Nov /Dec but have decided myself to push it 6 months. For several reasons.

Hopefully you get a date soon

 

[pekster11]

Sorry to hear that.. Hope you are doing ok and the valve isnt holding you back too much.

I was given an option recently for Nov /Dec but have decided myself to push it 6 months. For several reasons.

Hopefully you get a date soon

thanks
hope you're well too

i have no symptoms yet...still doing 10km runs a few times a week, and feeling fine

 

[Astro]

Pekster11 and PAN, sorry to hear how COVID is disrupting your plans. Hopefully these delays will have little impact to your long term health. Hopefully you don’t develop any nasty symptoms that would force the surgeons into earlier action. Pekster11, that running sounds very encouraging.

 

[pekster11]

Pekster11 and PAN, sorry to hear how COVID is disrupting your plans. Hopefully these delays will have little impact to your long term health. Hopefully you don’t develop any nasty symptoms that would force the surgeons into earlier action. Pekster11, that running sounds very encouraging.

thanks Astro
my treadmill has come in very handy now we're in winter over in the UK

 

[pekster11]

pencilled in for surgery on jan 26th !!

incredibly on Tuesday whilst i was in work the hospital phoned me up offering me surgery that Thursday due to a cancellation (48 hours notice !!)

declined !

 

[Jmprosser.lab]

Good luck!! Looking forward to following your recovery. Best wishes and happy holidays!!

 

[PAN]

48 Hours, wow that was optimistic..

Best of luck for the big day

 

[Chuck C]

Best of luck with your surgery! With the long delay, I'll bet your glad to finally have a set date. Wishing you a speedy recovery and please keep us posted. Happy Holidays!

 

[carolinemc]

pencilled in for surgery on jan 26th !!

incredibly on Tuesday whilst i was in work the hospital phoned me up offering me surgery that Thursday due to a cancellation (48 hours notice !!)

declined !

At least you have time to get ready, January 26, 2021. Good luck.