New - old member reintroduction

Valve Replacement Forums

Help Support Valve Replacement Forums:

tommyboy14

Well-known member
Joined
Mar 17, 2014
Messages
56
Location
London, United Kingdom
Hello everybody,

I figured I would share my story. I have been reading this forum for years off and on.

I am now 3 months post my 2nd AVR.

I had the first one at 33 in 2014. At the time I was choosing between Ross, tissue and mechanical. Ross went out the window since one of the best (in terms of peer-reviewed outcomes data) told me that this option wasnt for me because my aortic root was already too dilated. He said it would fail early, so it shouldnt be offered. I was really scared of warfarin (probably unncessarily so), so settled on an equine stentless valve. I was told equine pericardium calcifies less. The surgeon said that the next one could be a TAVI at the time. But when it came to it, my stentless valve failed, but in a manner that made TAVI impossible. Essentially, the valve didnt calcify (as promised), but instead one of the leaflets tore away (a bit like an old leather wallet can tear). But because there was no calcium, TAVI was impossible. So I needed to get a 2nd AVR.

My first surgery was in the US. Now I am in the UK. The medical advice in the UK was different from the US. My cardiologist, who is the number one proponent of TAVI in the UK, told me that a mechanical valve would be what he would choose at my age. He said that he did Tavi-in-Tavi-in-Tavi before successfully, but that this isnt a solution for someone in their 40s because a surgical intervention was inevitable in any case. My cardiologist said that monitoring warfarin with the Roche device is a minor inconvenience and that self-management improves outcomes a lot. He then referred me to a surgeon who specialised in reoperations (60% of my surgeons operations are reoperations). My surgeon said that he operated on people for their 6th AVR before without problems. However, he also said that my only option was a mechanical valve, because sometimes things happen (what if there are other heart issues down the line), and my lifestyle wasnt anything were warfarin would be an issue. He said I could still go skiing, so long this is done defensively and I wore a helmet. Despite his experience with complex multiple AVR cases, he told me it is better to avoid multiple reoperations if you can.

I found the clear recommendations of the doctors in the UK (I.e. not putting all of the decision making on the patient) very helpful. Importantly, I knew my cardio to be the one of the best in the UK and my surgeon had really good operative outcomes (his mortality rate for emergency aneurysm surgery was five times lower than national average). By giving really clear recommendations, they made my decision about what to do a lot easier. So I ended up with an On-X valve and am happy about it. So the best advice I can to anyone looking for an AVR: Find a set of excellent doctors and trust their advice. They know this way better than you (the patient) ever will.

I figured I would share my story, so hopefully others dont make the same valve choice mistakes in the future.
 

Seaton

VR.org Supporter
Supporting Member
Joined
May 12, 2015
Messages
469
Location
London, UK
Greetings Tommy.
Great write-up. Really glad things worked out well. And fantastic you had the involvement of such brilliant surgeons. Inspiring to hear!
At what UK hospital did you get your surgery? I had mine replaced at St Thomas' in London. A first rate experience. Such a great team.
Wishing you continuing good health and all the best for the future.
 

tommyboy14

Well-known member
Joined
Mar 17, 2014
Messages
56
Location
London, United Kingdom
Hi Seaton,

I went to the Cleveland Clinic London. This is a new hospital and it is all private. I had private health insurance. If you have private health insurance or can afford it, I really recommend this hospital and the staff for surgery. It was really like a 5* hotel experience throughout, including excellent food and the nurses even stayed in my room and kept talking to me when I couldnt sleep.

5* experience all around.

Essentially this is the US Cleveland Clinic trying to break into the European market. I think they did a really good job so far.
 

ValveAdmin

Administrator
Staff member
Admin
Joined
Apr 9, 2019
Messages
277
Location
SE USA
Hi Tommyboy,
Great story. Glad to know you're doing great after the recent surgery and for having a fantastic experience throughout your stay. Wish you all the best.
 

Timmay

Grandfather Clock
Supporting Member
Joined
Apr 22, 2022
Messages
136
Location
Frederick, MD
Great story. Thanks for sharing.

Totally on point with a mech valve at your age. Happy to see doctors in the UK making great recommendations. Not sure why cardiologists and surgeons here would EVER recommend at tissue valve to someone in their 30s or 40s. Doesn’t make sense (so long as warfarin isn’t contraindicated like pregnancy, etc).
 

treichert0312

VR.org Supporter
Supporting Member
Joined
Jul 31, 2022
Messages
31
Location
Dayton Ohio
Tommyboy - I share a lot of your story! I went porcine rather than mechanical in May 2014, for the same warfarin losing out on life reason. 8 years later, after four days of strong activity, my leaflet tore away. Local doctors diagnosed congestive heart failure and suggested mechanical valve and by the way why didn’t you go mechanical in the first place. So I went back to original surgeon to get my TAVR / TAVI but he said that mechanical was way to go. June 19 - almost 3 months ago - got the OnX installed with the Nicks Modification.
Did a bicycle commute to work today - 12 miles round trip - and feeling very good. INR is 2.4 a couple weeks in a row now, looking stable. Had a week of Covid 2 weeks ago - hope to be done with that - and ski season is coming up soon.
I did not find this forum after my previous surgery but really enjoy the board now. Thanks for telling your story.
 

tommyboy14

Well-known member
Joined
Mar 17, 2014
Messages
56
Location
London, United Kingdom
Thank you for great messages everybody. I really appreciate them.

The other thing that I found interesting is that my blood pressure actually came down with the mechanical valve. With the stentless valve which was suppose to be the one with the best hemodynamics among tissue valves, I has a resting blood pressure of 130/90. It was now consistently dropped to 120/80. This could just be a function of all the surgery drugs still coming out my system, but I certainly hope that is stays that way.

The only other recommendation I can give to anyone is to do Cardiac Rehab. There is now a really good private option here in the UK, where the cardiac rehab personal trainer will train you virtually via two smart devices set up in your home. Imagine you can now do Cardiac rehab at home if you like :)
 

Timmay

Grandfather Clock
Supporting Member
Joined
Apr 22, 2022
Messages
136
Location
Frederick, MD
Thank you for great messages everybody. I really appreciate them.

The other thing that I found interesting is that my blood pressure actually came down with the mechanical valve. With the stentless valve which was suppose to be the one with the best hemodynamics among tissue valves, I has a resting blood pressure of 130/90. It was now consistently dropped to 120/80. This could just be a function of all the surgery drugs still coming out my system, but I certainly hope that is stays that way.

The only other recommendation I can give to anyone is to do Cardiac Rehab. There is now a really good private option here in the UK, where the cardiac rehab personal trainer will train you virtually via two smart devices set up in your home. Imagine you can now do Cardiac rehab at home if you like :)

My BP was originally lower too (most likely due to the metoprolol [beta blocker]). It is back to normal now ... so relatively no change. That said, Cardiac Rehab was/is awesome. Guaranteed 45min of cardio every other day. They take my blood pressure afterward (after ~5min of cooldown in a chair) and I'm almost always lower.

Regular: 130/85
After cardio: 120/80
 

Mister_James

Well-known member
Joined
Aug 23, 2013
Messages
160
Location
NYC
This is the story we try to impress on everyone.
Forget the promise of TAVI. The only question to ask yourself is warfarin therapy or another OHS and pray you are in the same shape that you are today.
Odds are you will not be the 35 year old who went 10+ years with a tissue valve but even if you are...re-op at 45 another reop/maybe TAVI at 65?
Sternum cracked twice, heart sliced twice and all that scaring...$500k vs $300/year for Warfarin therapy and monitoring.
 

pellicle

Professional Dingbat, Guru and Merkintologist
Joined
Nov 4, 2012
Messages
10,745
Location
Queensland, OzTrayLeeYa
$500k vs $300/year for Warfarin therapy and monitoring.
I pay about $6 per strip and about $20 per month for warfarin
I test in average weekly
So that's $320 a year and $240 for warfarin, so let's be generous and call that $1000 per year (Australian dollars).

I'd there was a push towards a new magic anticoagulant that didn't need monitoring I'm willing to bet that it would cost more than I spend on monitoring.

Just to add a break down to your estimate...
 

pellicle

Professional Dingbat, Guru and Merkintologist
Joined
Nov 4, 2012
Messages
10,745
Location
Queensland, OzTrayLeeYa
I wanted to address this one better (I hate typing much on my phone

Forget the promise of TAVI. The only question to ask yourself is warfarin therapy or another OHS and pray you are in the same shape that you are today.

It won't be popular and I can see why it shouldn't really be said, but it just may befit someone.

As Jung put it most people can't think, therefore they judge.
1663790922089.png


it used to be a more simple process:
  1. for adult patients under 60 years of age a mechanical prosthesis was recommended unless there were medical reasons why the patient could not have AntiCoagulation Therapy
  2. for women of child bearing age or adult patients who could not tolerate ACT a (so called) bioprosthesis was recommended.
there were of course specific details involved in even more minority cases.

The problem is that patients seek a cure, for "Jesus to touch them" and be cured. This is not presently possible, let me quote from this article


Despite the marked improvements in prosthetic valve design and surgical procedures over the past decades, valve replacement does not provide a definitive cure to the patient. Instead, native valve disease is traded for “prosthetic valve disease”, and the outcome of patients undergoing valve replacement is affected by prosthetic valve hemodynamics, durability, and thrombogenicity.

[bold mine]

so durability vs thrombogenicity is what we juggle. Anything else is ignoring the facts and pandering to problems of the psyche.

People deny the durability issue and it would seem focus on the (swinging watch of the doctor) horror of coping with thrombogenicity in an illogical and perhaps (while largely suppressed) hysterical response to their utter fear of such a major operation.

Much is made of the "onerous nature" of managing AntiCoagulation Therapy (which is the medical management of thrombogenicity) but indeed that's also a manufactured problem because frankly its not onerous anymore.

Sure if I was living in 1970 and was forced to manage my ACT (which we do in the current methodology by measuring blood coagulation levels with a number called INR) by having vein draws I'd baulk too. But we don't live in 1970 and for at least twenty years we have had sufficiently accurate convenient Point of Care machines to do exactly that and thus remove the onerous nature.

Notably the low cost and convenience of this is to some extent blocked in some countries (yes USA, I'm looking at you) by interest groups (medical insurance companies seeking a low hanging fruit of over charging for a simple service and a medical complex which makes rather large profits from not giving you the lowest cost solutions.

The skeletons are brought out of the closet and jangled before the patient who (being recently diagnosed, ignorant of the reality and in shock) is suitably convinced that some (you name it) other (often medical cottage industry and always far more expensive) treatment is better because it avoids that onerous ACT.

The patient is then quickly persuaded to make the judgement that managing ACT is a boogie man and that reoperation in the future is preferable.

This is ironic because its the operation that has terrorised the patient in the first place. In for a penny in for a pound logic seems to follow that a string of surgeries is proposed (although its often suggested to them that a magic word will make that a painless process; yes I'm talking TAVR). Further research on that is not even thought of because the willing patient now is doing anything to avoid the further "horror" of ongoing ACT after the horror of the surgery.

Who knows, that bioprsthetic valve may last me 25 years or longer (so the patient seems to think the surgeon said).

Its the Las Vegas complex

Statistics are often manipulated (not used in a rigorous manner) to support the view that this is possible (note not probable) and people then look for any shred of evidence that someone else walked out of the Valve Choice Casino with a One and Done surgery that avoided that horrible "Rat Poison".

I expect that this analysis will ring true with some and cause great emotional reactions in others. No doubt some technical conjecture of a future possibility or some study will be brought forward to "prove" otherwise.

So let me remind the reader of a truism:
An order of things: Lies, bloody lies, statistics and Maps

I recommend a dispassionate application of "Occam's Razor"

Among competing hypotheses that predict equally well, the one with the fewest assumptions should be selected.​


Best Wishes
 
Last edited:

Superman

Well-known member
Joined
Oct 2, 2009
Messages
1,707
Location
Grand Rapids, MI, USA
A couple interesting stories here that kind of put some perspective on the, “Only listen to your doctors” crowd. Different doctors, same patient, different opinions. Kind of like normal people, right?

Knowing medical professionals, watching my son work through pre-med in college, I take nothing away from their efforts. But I also know they are just regular people with the same bias and personal preferences as the rest of us. They make the decisions they’re most comfortable with. Not necessarily always the best for each individual circumstance, and those decisions certainly don’t always work out as planned / hoped.

As far as warfarin cost, I pay maybe $100 a year to have a doctor apparently peek at my results and bill be for the look. Otherwise it’s covered. Maybe $120 for prescriptions (I get 1’s and 5’s). Would be half that if I had one magic dose that always worked.
 
Top