Harry's Journal

Fidel Martínez Ruiz  Harry, your survey is a good idea and perhaps you could take out some interesting conclusions. More responses are needed. Go for it !

David Buchanan  Harry

I had an on X valve installed six weeks ago
I am 55 years old and they told me it will last a lifetime

Besides the blood thinner issue that I’m still managing to try to stabilise I feel 100% back to normal after six weeks

The on X valve is very quiet and I cannot hear it ticking at all so fundamentally very similar to a tissue valve

You may want to take a look at the research here that was presented by my surgeon about 4 years ago 



It may give you some insight

https://youtu.be/NA_GdYko7BY

Harry Neumann  David Buchanan.  
Reading your story and going through all your journal posts is really touching and inspirational. Great to hear that you are doing well.  I as well have a bicuspid aortic valve that has severe stenosis and as time goes on and i get closer to my surgery date I may have some questions if that's ok? It has not been determined that a mechanical valve is the best but I think it may be?

Your Heart brother

Harry

JULIA LAFEAR  Hi... Im 51 year old female and had mitral valve stenosis. Had mechanical valve replacement and open heart surgery at end of May 25. I was very surprised I needed valve replacement as I had minor symptoms but very grateful to be 5 months from surgery and feeling more like myself again.

Ed Eller  67 yo male  On-x mechanical valve and Bentall procedure. Like David above, my valve is very quiet. Other doctors are surprised when I tell them its a mechanical valve because they don't hear any clicking. I have had no issues dealing with the blood thinner for 3 years now.

Doran Herritt  Harry, saw this and read your story and it was very like mine. (surprise murmur at annual physical) So i thought I'd chime in......Just went through my 10 year checkup for my Edwards Tissue Aortic replacement valve. I am part of the "Commence" study for the valve. Doing great. Feel great. Test showed good seating of valve and excellent condition. I was only 46 when I got mine. Study manager said they are seeing great results from study participants. I did tissue because I'm active and didn't want to take anti coagulants. Dr.s are steering you away from the tissue because they used to wear out faster in us young fellas. Not really the case anymore. (Although if you go mechanical it will last forever) Like my valve all the new Edwards (and other brands for that matter) have the anti calcification coating to make the valves last longer. (I'd love to get 20 years vs. the old 8-12 years) Anyway. whatever choice you make will be a good one. It becomes very personal. I am so happy I went tissue valve. 1 more thing find a hospital and a doc that does a lot of these. (thousands) Heart surgery is no time to go "average" on level of care. (US news ranks top hospitals, not sure if Canada is in there though) Dr. Bavaria did mine at Penn in Philly. He has moved onto Jefferson, But I would recommend him everyday of the week. Good luck! God's speed! Prayers!

John Hannon  Male Ross Procedure at age 26 and two bovine tissue valves at age 51.  I'm 58 now and doing well.  https://health.ucdavis.edu/news/features/heart-of-a-champion-how-john-hannon-went-from-open-heart-surgery-to-an-ironman-triathlon/2024/02

Darrell Malone  Hey Harry. I see there is a Patient Webinar: Advantages of the Ross Procedure hopefully you can attend it. Nov 13 6pm. 

Susan Bodner  I had st Judes mechanical valve placed 1990. I had our third child 1992. First women to have baby with artificial valve. Just passed 35 year mark, so glad i made that decision. Important to know your goals, your doctor,  great information. You are your best advocate

John Cook  Sorry it took me a while to dig this up.  This is an interview between Adam and my surgeon, Dr. Burke.

In the last 3 minutes, Dr. Burke talks about how he evaluates patients on pushing the upper age recommendations.  He uses a combination on age & general health as a proxy for life expectancy for patients.

https://youtu.be/XZHGqQAowiI?si=DbxLsPCEtYSHlLPN">https://youtu.be/XZHGqQAowiI?si=DbxLsPCEtYSHlLPN

John Cook  Ross at 53, male.

The patient’s lifestyle & overall health plays a roll in deciding if someone is still a Ross candidate on the upper end of the age recommendations.  If the valve is in good condition and the patient looks like they will have a good recovery, they may decide to go ahead with it.

I call it “the Goldilocks Zone”: you have to be sick enough to need the surgery but healthy enough to recover from the surgery.  People can be much older than 50 but still be in the Goldilocks Zone if the rest of their health still looks good.

Though I’m above the ‘normal’ cutoff and I am overweight, I was also averaging 3 hours per week of cardio.  While my endurance is still around 80% of what it was before surgery, I’m back to doing 3 hours of cardio a week at 5-months post-surgery.

If I hadn’t made some serious lifestyle changes 3 years ago, I might not have been a Ross candidate.  I certainly would have had a more difficult time with Rehab.

Adam Pick  Ross Procedure... 33 years of age. Have had no problems since then. On December 21, it will be 20 years with no post-op issues, no re-operations and/or no re-interventions.  That said, the Ross procedure has yielded a great result for me. Fyi, I continue to get annual echos to ensure that my valves and aorta remain in good shape. 

Harry Neumann  Still compiling a data set to see if there is an age grouping for the different types of aortic valve replacement.
Darrell you are the current winner for the Ross procedure at 55 y
Anyone else in the "the Goldilocks Zone" for the Ross

Thanks for all those that have responded so far.
With only 6 respondents this is in no means representative of of true population
There must be some mechanical valve people out there???




Extremely limited data set to draw any conclusions but hear it is


There is a clear age relation to valve type even on this extremely limited data set.

More data please
If you have responded thanks
If you have not please respond with the following

Type of valve replacement----- Age ---- Gender

Thanks

Cathleen Weed  I've had several types of surgery at this point since I've had 5 aortic valve replacements (except a mechanical valve). I did have a Ross at 23 but it only lasted 10 years until I developed a 6cm (that is huge) ascending aortic aneurysm which literally blew the valve out. I'm very lucky it didn't dissect before it was discovered. It had adhered to the back of my sternum which ended up saving me. I had to have my 3rd open heart at that point and have a bovine tissue valve placed along with a new Dacron ascending aorta through the arch (called the Bentall procedure). So BE SURE to know your potential future aneurysm risk if you are considering a Ross procedure. It seems to be part of a larger connective tissue disorder associated with bicuspid aortic valves. If your ascending aorta is dilated at all right now I wouldn't do a Ross. The surgeons do seem to be very aware of this risk now. Having said that, the donor valve which was placed at the pulmonic position when they took mine to put it in the aortic position is still doing just fine, thankfully . The right side of the heart doesn't receive the same amount of pressure.

I read that you are being advised to get a mechanical valve. You absolutely have to take those blood thinners with a mechanical valve. That's a lifestyle choice. Are you active? Would that bother you?

Harry Neumann  Wow Cathleen you have been though a lot.
The choice of valve might not be mine to make. Being 58 yo might just eliminate me from the ross procedure even though I am active. I am not a marathon runner but I do enjoy outdoor activities and I am always doing things. 

So if the ross procedure is not an option I would probably look at a mechanical valve. Mechanical valve just because or the longevity of it. Would I want to be on blood thinners and test the INR every month or so? Absolutely not! Could i get used to it and do that ? Probably! What choice would I have?  You can get a hand held coagulometer, test at home, adjust thinner dosage and stay in range.  Getting a tissue valve and repeat in all this in 10 years when it wears out? . I know the option of TAVR with a valve in valve would be on the table after the tissue valve wears out, but still that is another heart procedure and that may very well be less than 10 years

Thanks for sharing your story

Harry

Ercan Afacan  Hello Harry,
your understanding on the Ross procedure is correct. 
I was told and read the following, that the Ross procedure, if you meet all the requirements, has a better outcome than the tissue valve if no complications arise after the surgery. 
The tissue valve may only last 5 or 10 years at your age before another surgery is required.
The Ross is definitely a more complexe surgery hence must be performed at a high volume surgery center but the overall risks are similar to an aortic valve replacement procedure. 

Don’t hesitate if you have any other questions.   

Adam Pick  Hi Harry, The link above should answer all of your questions about the Ross.  Fyi, I had it done nearly 20 years. So far, I have not had any problems with either valve. The key is to finding a Ross Procedure expert.

Ercan Afacan  Adam when you say you have not had any problems, no symptoms. I am assuming you are having your yearly echo and all is stable? Waiting for my Ross procedure surgery date. Thanks again for all your support and bringing us together. 

John Cook  The long term statistics are better for Ross than they are for both bio & mechanical valves. The tradeoff is a slightly higher risk of mortality or complications during the surgery because it is a longer & more complex surgery.  Also, you need to fina a surgeon that does a lot of them.

The relocated pulmonary valve lasts longer than a bio valve and the donor valve is treated so there are no rejection issues. The donor valve does fine in the pulmonary position because it’s a lower pressure position than the aortic valve is.

One of the keys to recovery is a strict protocol to keep your blood pressure under 120 when at rest for the first year. It helps the pulmonary valve to adapt to its new home.  One of the hangups for me being discharged from the hospital was finding the right combo of carvedilol, losartan, & amlodipine to keep me under 120 but also not too low.  I’ve since had to adjust the balance twice.

Harry Neumann  Hey thanks for all the Info.

Adam thanks for the link to the Ross procedure, that really does help. Thanks for the info on the webinar Now 13 as well. And Adam a really BIG thanks for this website, it has helped me more than you can imagine

In my searching for a surgeon I did come across the following site.
https://therossprocedure.org/find-a-surgeon

Ercan it sounds like you are going through the same thing that I am. Do you have a surgery date? Where are you getting the procedure done? And who and how did they determine that you were a candidate for the ross?

John thanks for your info. You state that the long term statistics are better for the ross than they are for both the bio and mechanical valve? I can see how it could be better than the bio valve but long term the mechanical does last? It does also make sense that the donor valve would last longer or even a life time in the low pressure pulmonary position. The strict control on the BP is also something that I did not know about.

Harry

Ercan Afacan  Harry,
I do not have a date yet but I was told in 2-4 weeks. 
My surgery will be at the Montreal Heart Institute. 
I was told that I was a candidate after the angiogram results and other tests (CT scan, Thoracic X-Ray and Lung capacity/performance)

see link below from this wonderful site. 

https://youtu.be/orp_QNBh91A?si=ioH37gtFEc8YbVdo">https://youtu.be/orp_QNBh91A?si=ioH37gtFEc8YbVdo

Harry Neumann  Thanks Ercan that is very helpful with all the test that you have gone through to determine if you are a candidate. 
Who did you ask or talk to about the possibility of ross that triggered all the tests? 

Ercan Afacan  Harry, I was first scheduled for the angiogram. After the results, they mentioned that I would be a candidate for the Ross procedure. Met the surgeon the week after explaining to me the reasons to opt for the Ross. He requested to perform the remaining tests (Blood/Urine, CT Scan-X-Rays and Lung Tests). The following week I had an appointment with my Cardiologist and the Ross procedure was still on.
I also know that during operation, they might still discover an issue with my pulmonary valve and they will abort the Ross and go for a standard Aortic valve replacement. (Biological or Mechanacial).
Hope this helps. Let me know if you have any other questions.

John Cook  My understanding is they think there are 3 reasons why the long term statistics are better for Ross vs. mechanical valve:
1) the mechanical valve carries an increased risk of stroke.  That’s why warfarin is proscribed.
2) the relocated pulmonary valve will continue to grow with the patient. That’s why Ross is done on a lot of children.
3) the tissue for both valves is human and can flex the way human tissue flexes. Creep-stress can create problems for the other valves at the attachment points.

i also had to have a backup plan if they found an issue with my pulmonary valve.  I also chose a bio-valve as my backup.

Harry Neumann  At 58 yo I may not be a candidate for the ross. So I must check out my other options as well. Mechanical you have good longevity but life long testing and blood thinners...  Tissue valve you have no thinners to take but not as long lasting. 
I did come across something that is called "valve in valve" replacement for failed replacement tissue valves
So far I have not see a good reason as to why the valve in valve cannot be done on an original heart valve and only on a replaced tissue valve. If it can work on a failing tissue valve why not on the original through TVAR
Is the "valve in valve" a last resort for older people? 

Thanks
Harry

Cathleen Weed  Hi Harry - I am doing a copy/paste of my answer above to your other question...


I also want to add (based on this question) that they are starting to do a bunch of research on TAVR success being done into a native bicuspid aortic valve. They are done now but the risks are higher. Cedars Sinai just received I believe a $26 million grant to study this very thing. You

I've had several types of surgery at this point since I've had 5 aortic valve replacements (except a mechanical valve). I did have a Ross at 23 but it only lasted 10 years until I developed a 6cm (that is huge) ascending aortic aneurysm which literally blew the valve out. I'm very lucky it didn't dissect before it was discovered. It had adhered to the back of my sternum which ended up saving me. I had to have my 3rd open heart at that point and have a bovine tissue valve placed along with a new Dacron ascending aorta through the arch (called the Bentall procedure). So BE SURE to know your potential future aneurysm risk if you are considering a Ross procedure. It seems to be part of a larger connective tissue disorder associated with bicuspid aortic valves. If your ascending aorta is dilated at all right now I wouldn't do a Ross. The surgeons do seem to be very aware of this risk now. Having said that, the donor valve which was placed at the pulmonic position when they took mine to put it in the aortic position is still doing just fine, thankfully . The right side of the heart doesn't receive the same amount of pressure.

I read that you are being advised to get a mechanical valve. You absolutely have to take those blood thinners with a mechanical valve. So that's a lifestyle choice. Are you active? Would that bother you?

Ercan Afacan  Hello Harry. 

Since I have a bicuspid aortic valve, I can chime in. 

1-Left ventricule hypertrophy. Your left heart muscles are working harder than normal to pump the blood through the aortic valve hence its getting bigger.

2-EF > 60% is normal. That is the % of the blood the left ventricule pumps each  beat. 


3- Yes the comment here is that they cannot determine the number of leaflets on your aortic valve due the the calcifications. You mentioned that you were diagnosed with having a  bicuspid aortic valve. 

Hope it helps. Let me know if you have  any questions. Happy to help out as I have been reading up on this ever since I was told that I would need surgery. 

Harry Neumann  Thanks Ercan
The cardiologist did say probably Bicuspid valve, and indicated that it is genetic and that one of my parents have a bicuspid valve as well ? 
Thanks

Rose Madura  I had a bicuspid valve which was damaged from having rheumatic fever as a child. So it was kind of deformed and they never could say how many leaflets were on it. I didn't really know it was bicuspid until after surgery.  

J Alexander Lassally  Harry - as a general statement, you will get as much out of recovery as you put in and some of us get to 100% of self, some 90%, some a different percent. It all depends on many factors... I won't use rose colored glasses like many will on here (will let others do that)... 

In theory, you can become more fit and run faster, higher and stronger if you work for it. Cardiac rehab won't give you that immediately, it is just a framework. You have to do the work over time and bring motivation.  


I will say you need to pack patience and humility and give yourself time to get back to your Harry 100% whatever that looks like...

 
And yes, there are strict things you cannot do post sternotomy, but after the prescribed time period most things are theoretically attainable.  

Richard Munson  Jal, i always enjoy your comments. They are always right on point. I could toss in, not sure what fully recovered is, probably different for different people, activities to avoid might mean lifting very heavy weights. When changing a tire always use a jack. For sure differences in the bedroom. Sleeping on your back is usually better. 

Bonnie Stone-Hope  Hello Harry, I have heard very good things about cardiac rehab, but did not go myself.  This is because after both OHS, the weather was extremely bad, cold icy winter conditions, as winters in Canada are, so I stayed at home rather than risk falling.  Did stairs at home, walked inside the house, slowly increased pace, endurance.  Best of luck with your surgery

Fidel Martínez Ruiz  Hey Harry, adding my own experience to the fellows here, in my case I would tell you that I´ve recovered myself about 90% from my former physical endurance. Wish you the best !

J Alexander Lassally  Thanks for being honest Fidel - I am also probably around 85 to 90%. I was asymptomatic beforehand ... Interesting because two things can be true at once, I am more fit than ever and can run further, but also not 100% of compared to October 2023.   ( Off the record, some guys seem to lie about being 100% - maybe lie to themselves or to appear in control...) 

John Cook  I’m 5 weeks shy of 6 months, I finished rehab last week.

For everything but running, I’ve been at 100% since Week 10.  For running, I’m still around 75%. I lost a lot of endurance from the surgery. I’ve heard that stenosis patients have quicker recovery than dilation patients.  Stenosis patients develop a stronger heart from their condition and come out of surgery with a bigger pipe to pump through.  Dilation patients develop a weaker heart from their condition and come out of surgery with smaller pipe to pump through.

I just had my last follow-up with my cardiologist for 6 months. The only activity restriction I have is not pushing myself into RPEs 8 - 10 when I run. I’m not ready to push myself that hard anyway. I’m fine doing a bunch of RPE 4 - 6 runs and rebuilding my aerobic endurance for a while.

Daniel Jansen  It is Harry. It bothers some people, but for me is reassuring. It's not like it is super annoying or anything. Sometimes you forget its there, but if you listen, you will hear it. (At least I can in my case.) 

Dan Fouratt  Harry,  When we find out we need OHS fear is the first thought (maybe
second, third and fourth).  Let's be thankful we are not in an ambulance
learning this.  We have time.  Research your options. Look in to the Ross procedure.  Find out if the mechanical valve is right for you.  I was 63 when I went under the knife and I went for the tissue valve. That was my second major procedure in 6 months (brain tumor the other). Through those two I learned that you need to be your own advocate, ask questions and do the home work.  There is well north of 100,000 of these done a year so we are not alone.  Good Luck on your journey. Dan