Redo Surgery.

[Guest]

Hello all,

I posted on this forum years ago, during what was a bit of a rollercoaster time for me. Anyways, I had my Bicuspid Aortic Valve repaired successfully 24 months ago now, along with an atrial appendage occlusion at the same time for AF. I recovered well, and felt fantastic for about 18 months. Life was good, really good, and I felt as fit as a butchers dog like I say.

Unfortunately 6+/- months ago, I began to experience arrhythmias again, the red flag events were passing out suddenly whilst out shopping, and upon learning of my Mum's sudden death last April.

My repair has failed, I have pretty severe aortic regurgitation and a steadily dilating LV.
I'm symptomatic, and on all of the heart failure medications as prescribed by Cardiology.


At this precise moment, having already seen my surgeon and having had the full pre op assessment, I was due in for admission this afternoon, for surgery first thing in the morning. However, things are going slightly awry, and surgery has been postponed.

My surgeon wants to fit an On-X Valve. I would have had this done initially, but I had a nasty reaction to Warfarin prior, and it had to be stopped, I've been on a trial of Sinthrome (Acenocoumarol) for the last 4 weeks, and my INR is all over the place, in fact the same thing is happening in terms of, well, I'm just not anticoagulating properly.

I'm very keen to have this valve fitted as it means I should be free from another redo surgery, my surgeon says I could expect another 2 OHS's in my lifetime if not able to fit the On-X (I'm 43) which is just not an option for me, and not in my best interests, his words. I totally respect and trust him.

Does anyone know of these new Resilia Bovine Tissue Valves from Edward's ? I had a brief discussion with my surgeon's Registrar regarding these, and when they wear out, apparently, a new TAVR valve can be deployed within it, without the need for further OHS, and crucially lifelong anticoagulation therapy, which I'm having such an arse with at the moment.

It would be an absolute disaster if this On-X Valve goes in, and then I can't tolerate anti co post op.

I'm scared to death about having surgery again, much more so than last time, I'm aware that it's going to be a longer procedure, longer stay in ITU, and longer recovery in general, leaving things as they are on medication is also not an option.


In any case I'm due to see my Surgeon again next week.


Any advice/reassurance would be greatly appreciated, and apologies for waffling on.

Regards.
M

 

[jwinter]

I would like to tell you that I was fitted for an ON-X November 1 and my INR was truly all over the place also! My husband even gave me shots in belly to bridge twice(not as bad as this seems) but finally all came together nicely I became theraputic the week of Christmas and had one more tiny off number since. All is well now.

I am 60-first valve replacement 5 years ago and second 3 months ago. Not that bad. Keep your chin up and know you are not alone.

. After all............what other choice do we have:?

 

[pellicle]

Hi M

I'm quite curious as to what your reaction was when you say:

I would have had this done initially, but I had a nasty reaction to Warfarin prior, and it had to be stopped, I've been on a trial of Sinthrome (Acenocoumarol) for the last 4 weeks, and my INR is all over the place, in fact the same thing is happening in terms of, well, I'm just not anticoagulating properly.

your INR being all over the place seems like managment issues to me. Contact me if you want to discuss this (rather than me just going blah blah and attempting to second guess what your issues are)

Generally I think you can rest easy about your ability to tolerate AC drugs. If you do some searching of actual science journals (not better-life-with-kittens type sites) you'll find that almost noone has any problems with this. The biggest problems come from the medical ninnies who manage you. So my view is to actually take the bull by the horns and (as you feel up to it) begin managing yourself and advocating for yourself.

There are many members here who can help you with this (including me), so when you're time is right we'll be here for you.

One of the very few documented cases of allergy to the AC therapy drugs turned out to be an allergy to the dye that makes the pill a bright colour ... by changing brand that problem ceased.

With literally millions on AC therapy the chances of you having any problems are millions to one ...

I hope that reassures you a bit.

 

[Marko2011]

Hi, Thank you for your reply jwinter, and you also Pellicle.

After not being able to get my INR between 2.0-3.5 last time on Warfarin, my dosage was upped and I developed a dark purple rash on my legs, and purple blotches on my feet. I saw the Haematologist and was told I was to stop Warfarin immediately, it went away within the week, and I started daily Aspirin. I went ahead with the surgical repair of my BAV as I wouldn't have been on anticoagulation post operatively. I went home with Clexane. for a short while actually. I am carrying on with Acenocoumarol in the meantime, I'm on 5mg daily. I have been up to an INR of 3.0 with no adverse effects, but it's since dropped down to 1.4 and then 1.1 last Monday. It feels like a bit of a Groundhog situation. I'm slightly concerned that the same thing is going to happen again. I AM going to persevere though.

At the end of the day, If I react again, my only option will be a tissue valve, my surgeon isn't NOT going to operate on me.

Regards

M.

 

[pellicle]

...I developed a dark purple rash on my legs, and purple blotches on my feet. I saw the Haematologist and was told I was to stop Warfarin immediately, it went away within the week, and I started daily Aspirin.

sounds like warfarin necrosis to me ... so I'd agree with your hematologist 100% on that call... I'd ask about your doses and such, but perhaps that would be better if you called or emailed ... happy to discuss

my only option will be a tissue valve, my surgeon isn't NOT going to operate on me.

of course ... that would lead to death.

 

[erik]

It's amazing that your Bicuspid Aortic Valve repair also failed. Mine lasted for 3 years, but now I am scheduled also for a re-op. I think this whole repair thing is still very experimental, at least for aortic valves. It works better on mitral valves. They should inform patients about the potential risks, but they don't it seems....

 

[Marko2011]

Hello erik,

I'm sorry you find yourself in the same position, When are you scheduled for your redo ? Have you decided on valve type yet ?
I was really happy that my surgeon attempted the repair, when I signed my consent form it was for repair/replacement with a tissue valve, immediately post op the results were good, with no leaks.
He is as disappointed as I am, that it didn't last long. He does want to get in there again ASAP.I was due for admission this afternoon, but it's been temporarily put on hold.

M

 

[honeybunny]

Sending positive thoughts for a successful surgery and recovery.

 

[Marko2011]

Thanks honeybunny,

I feel more than sure, that everything is going to work out well for me, I have a good team, and one of the very best cardiac surgeons in the country. I'm very grateful