Monocuspid Aortic Valve and 5.5 Ascending Aneurism Repair via David method. Barcelona. Spain.

[manuel_Scotland]

Hi All,

What you are about to read is basically the end of a threat I created while ago called “Exercise and Tissue valve” but due to the amazing turn of events it´s not really valid anymore. I think people can benefit from what I went through so happy to answer your questions.

I´m a 44-year-old fit individual that, by all means, didn´t want to get a mechanical valve. In 2017 I was found and Aortic Aneurism of 5.3cm and a bicuspid (later found monocuspid) aortic valve. That day I knew my destiny was set. Summer 2022 the size grew to 5.5cm so time to proceed.

After many talks with the doctors in Barcelona, Spain where surgery would take place and against some recommendations, I asked for a David method to be used. I was aware of the complexity and risks of it but there was a slight chance (less than 20% I was told) for my valve to be saved. Nevertheless, my little valve has given me too many joys during the years for it not to give it a final chance. In case I couldn´t be saved, a tissue valve would be used. The valve would be installed in a way that would facilitate a TAVI replacement in 10-15 years.

Well, did you know what happen? The surgery team at La Vall d´Hebron Hospital in Barcelona managed to fix my valve! They managed to transform my valve from a tired monocuspid to a fully functional and clean bicuspid with a life expectancy unknown but, I´ve been told, at least twice the life spam of a tissue for someone my age. I still cannot believe it.

This is how it worked:

Monday 8:00 am. I enter the operating theatre.

Monday 5:00 pm. Leaving the theatre and joined the Intensive Care ward.

Monday 7:00 pm. I woke up while the breathing tube was being removed. I didn´t spend any conscious second with that think in.

Wednesday 1:00 pm. I left IC and was moved to a normal room.

Thursday 5:00 pm. I was free of any tube, catheters etc. Except for the 2 small cables of the external pacemaker just in case and emergency one was needed. The pacemaker itself was removed on Tuesday.

Friday. Mobilization day, I walked up and down the hospital.

Saturday. First set of stairs and gym class

Sunday. Walk and exercise.

Monday 8:00 am I was released from the hospital. In exactly one week from the start of surgery.

And here I am at home now, 5 days in. No pain, walking around the streets of my neighbourhood and even got a pedalling machine. Trying to remember that something really happens. My resting HR is 64bpm, still a handful higher than pre-op but feeling ridiculously well and in good spirits. I just hate sleeping looking at the ceiling.

I won´t need any medication for the years to come, I took a massive leap of faith in going against the doctors ‘criteria to have my valve dumped and go for a mechanical but I always knew that I was going to be me the one carrying it. And it played out perfectly. Thank you so much you all for your multiple answers and support in this forum during the years. I´m part of the amazing group of people you are now.

 

[pellicle]

Good morning

glad you came through surgery with a good outcome.

I have a few questions if you don't mind, mainly because I'm trying to learn about the mistakes that the medical system makes in terms of psychology.

I´m a 44-year-old fit individual that, by all means, didn´t want to get a mechanical valve

I initially wondered why would "by all means" did you not want the best possible chance of not needing a redo operation especially in the light of the aneurysm repair, but then I read this:

I won´t need any medication for the years to come, I took a massive leap of faith in going against the doctors ‘criteria to have my valve dumped and go for a mechanical but I always knew that I was going to be me the one carrying it

I'm wondering why the most reliable valve so far in human history would be something you'd take a "massive leap of faith" and go against the advice of the main stream medical opinion to avoid? I know it can't be to keep a diseased valve in a surgery which will with total certainty (unless you get killed first) require a redo operation and then what?

I can only conjecture its because of how badly the medical system has utterly failed in the management of warfarin therapy from all angles.

1. failure to communicate reality
2. failure to engender confidence in the therapy
3. failure to engage you

I personally find these aspects (of the medical system) entirely lamentable. So much misinformation in the system. I would love to correct it, but I just don't think its possible (due to the scale).

If it wasn't because of what I've said above, what was the cause? I know some people have a deep rejection of the "symbology" of "starting a drug needed for life". I suspect this is some sort of "symbol" for the passing of youth and into age and that denying the chalice means they aren't old.

Anyway, I hope you get good mileage on the repair. I look forward to your answer to my question because its a problem I want to understand.

Best Wishes.

 

[Survived03]

M-S, I'm going to jump in and tell you a little of my back story. It might help you or others on this forum. I am by no means trying to point-counter point your decision or anyone's personal decision. I too had a valve sparing T David-V surgery 20 years ago. I have a congenital bicuspid aortic valve and my ascending aorta was somewhere north of 5.5. The surgeon at the time only had 7 years of data to support his explanation about my possible future as it relates to my valve and it's expiration date. He specifically said "7 years, 10 years, maybe longer and maybe your lifetime". To be honest, at the time I was so frightened of the aneurysm (family histories) that the valve was almost an afterthought.

I will be 63 this year and in pretty good health. Exercise, road bike, hike miles and mountains and was a downhill skier, downhill mountain biker, etc. I really have no regrets with my original decision. Judging by the folks on this forum that chose mechanical valves, they seem to experience a lot of the same knumbskull activities that I have with very few limitations. I think you should embrace the path you and your surgeons have taken and live a full fun life.

However, a possible peek into your future is that I now have severe aortic stenosis and will require a new aortic valve. What I am experiencing is a lot of due diligence with opinions on the type of valve I will select (unless I have no choice once on the table). I do at times get mentally exhausted thinking about a second surgery. I have another appointment with one of the surgeons next week and have specific questions about my aortic annulus size and the narrowing of the sinotubular junction which were all part of the TD-V valve sparing procedure and gave me 20 more years with my native valve. I believe all the current measurements, valve root reconstruction and coronary artery placement will all come into play if I choose either mechanical or bio valve today.

Twenty years ago I probably asked 3-4 different physicians their opinions regarding valve sparing vs. mechanical or bio valve. Albeit probably biased, they all said "technology continues to improve and there will be more choices in the future". I can confidently say that this was a true statement. We now have TAVR (not for me this go around) and new biovalves that are claimed to last longer and claimed to be valve-in-valve ready when and if a third valve procedure would be necessary. I also feel confident that new anti-coagulants compatible with mechanical valves will someday be available. The last point I would make is that sometimes, and in my personal case, a patient may have other medical needs requiring attention in the future that should be factored into the equation.

I will end this with what I mentioned earlier. Go and live a fun life! We do the best homework that we can and ultimately place a bet. I wanted to share this with you and others so that you can gain insight from one person's valve sparing experience and how it relates to possible future decisions. My full story is still unfinished. Have a great weekend and by the way, I have spent a lot of time in Barcelona and visited La Vall de` Hebron for work related topics. Great hospital and one of the top European cities in my opinion.

 

[pellicle]

Hi

Twenty years ago I probably asked 3-4 different physicians their opinions regarding valve sparing vs. mechanical or bio valve. Albeit probably biased, they all said "technology continues to improve and there will be more choices in the future". I can confidently say that this was a true statement....... The last point I would make is that sometimes, and in my personal case, a patient may have other medical needs requiring attention in the future that should be factored into the equation.

I notice that people seldom mention improvements in the personal electronics that result in better and simpler methods of monitoring INR.

If one gets type 1 diabetes then you are signed up to monitoring your blood sugars for life and administering insulin. Perhaps this monitoring is best described as "hourly" more so than "daily" and yet the administration of warfarin is a small medicine intake daily and monitoring weekly.

Taken in this light I just don't see how planning for future surgeries is even on the table unless you are medically contra-indicated for ACT (which is pretty rare).

The only angle I can shine a light into this maze that shows anything understandable to my eye is from the perspective of "people just don't want to be involved in their own health".

Being objective, and genuine, can you show me another view please?

PS: and I mean this in the perspective of a patient who is under 50 not over 60.

 

[manuel_Scotland]

Hi



I notice that people seldom mention improvements in the personal electronics that result in better and simpler methods of monitoring INR.

If one gets type 1 diabetes then you are signed up to monitoring your blood sugars for life and administering insulin. Perhaps this monitoring is best described as "hourly" more so than "daily" and yet the administration of warfarin is a small medicine intake daily and monitoring weekly.

Taken in this light I just don't see how planning for future surgeries is even on the table unless you are medically contra-indicated for ACT (which is pretty rare).

The only angle I can shine a light into this maze that shows anything understandable to my eye is from the perspective of "people just don't want to be involved in their own health".

Being objective, and genuine, can you show me another view please?

PS: and I mean this in the perspective of a patient who is under 50 not over 60.

Hi,


I´m just going to share the line of thoughts that took me to my decision. But let me point out that I don´t want anybody to think the same way. I´m just going to share.

There were a few factors that made me go for the repair or bio valve. First is the noise. I have a story of anxiety and depression in the past and I knew for a fact I wouldn´t be able to get used to the ticking noise. I have read/heard that it´s fine, that you get used to it etc. I very much doubt it will be me, to be honest, I´d have needed psychological support to deal with it.

Second is the warfarin, I understand what you mean, but I won´t work for me. I travell all the time, just to give you and idea I´m very close to enter "Travelers Century Club" and my aim is to visit all the countries in the world in the next decade or so. Managing warfarin that won´t be possible.

Also, psychologically speaking, I couldn’t face the recovery knowing that, at the end of all the suffering, I´ll have a new type of sickness. I needed to know that, at the end, I´ll be as good as new.

Recently in my family have been some unfortunate people dying basically without notice, my dad was found a cancer and died 3 weeks afterwards, my cousin (42) the same. For me having a prosthetic valve means I´ll have to be with something that handicaps my live with the "promise" I´ll live the rest of my life with it, as if having it would, somehow, guarantee invulnerability forever (nothing else can kill you except of it). We have to life many days, but we only die one, and I want each one of those days to be as perfect as possible. Life, without any doubt will throw me sh*te anyway, I want to be as ready as possible to deal with it.

Apologies, as I´m not an English speaker. Hopefully you all should be able to understand what I mean.

 

[manuel_Scotland]

I have created a Youtube channel with the recovery, unfortunatelly is in Spanish, but I may come across interesting to see the machines and how my face changes from one day to the next.

https://youtube.com/@manueljimenezmilian165

 

[pellicle]

Good Morning Manuel

thank you for answering my question as carefully and reflectively as you did.

Firstly I'm no "hard liner" on the "one and done" view because I've already had 3 (hopes I'm done now). I started at about 10 and had another at 28 and then another at 48. Each surgery gets successively more complex and leads to a greater array of post surgical complications. Something I knew as a theory in the past, something I now know as a personal experience now. I won't dwell on that but you can ask if interested

I´m just going to share the line of thoughts that took me to my decision. But let me point out that I don´t want anybody to think the same way. I´m just going to share.

and thankyou for sharing that ... we all make decisions with the time and situation we have. As mentioned above its my view that if you start early enough in your OHS career that you'll eventually require a second (or more) surgery. Given your age I think its entirely likely you'll need another. If you don't then that's even better.

Second is the warfarin, I understand what you mean, but I won´t work for me. I travell all the time, just to give you and idea I´m very close to enter "Travelers Century Club" and my aim is to visit all the countries in the world in the next decade or so. Managing warfarin that won´t be possible.

This exemplifies my point, I have spent more time out of Australia than in Australia since my 2011 surgery. I monitor my own INR and have nearly zero interaction with the medical system on that. I use a tool called a Roche Coaguchek and it allows me to sample my blood whenever I want. I've used it to enable me to travel to Finland (where I lived on and off for a few years after my 2011 surgery, as well as before it), Sweden, the UK, Prague ...

Sadly education in this matter and manner is very poor and exactly what you said about support has already been shown to not be there for you. I'm pretty motivated about this topic and its my readings here that have helped me to see just how large the scope of the problem is. I'm currently in the final stages of my book on INR self management and am hoping to take it further again.

I hope that you get good mileage on your surgery, and get over 15 years from it.

From what I infer from your reply you've got your attitude set in a good way and no matter what happens I feel strongly that you'll conquer all obstacles.

In my case my first surgery when I was young was a repair, like yours. This lasted until I was 28 (in 1992) where I got a homograft. This lasted until I was 48 when, driven by an aneurysm, I got my mechanical and a bental.

Lastly I'll leave you with this I think its well phrased in the Journal:

http://circ.ahajournals.org/content/119/7/1034.full

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

just like my original valve (that was repaired) I was left with a diseased valve. I was under no impression from the get go that this would be permanent, but as a stop gap to enable me to get to adult sizes. Nobody knew how long it would last. Everyone hoped for longer than shorter. The same was true of my second valve. The same is no longer true with my ATS.

Best Wishes