Rune's Journal

What reasons do you see for not going for the Ross Procedure instead of a biological or mechanical valve? Ross seems to be “the silver bullet” with no serious downsides if done right by an experienced surgeon for eligible patients under 60? In my ongoing careful considerations of which procedure to choose for myself in 4-6 weeks time (initially focussed exclusively on tissue valves vs. mechanical valves) I’m increasingly drawn towards the Ross Procedure as the least bad solution avoiding most downsides of both the biological valves (durability and fast calcification) and mechanical valves (clicking noise, blood thinner lifestyle, and risk for stokes and bleeds). Thus, I wonder why no more single-issue patients below 60 have followed in the footsteps of Adam Pick, the founder of this incredible and admirable ressource, and have gone for a Ross Procedure?! In the Ross procedure your own (less important) pulmonary valve (PV) is used as a spare part for it’s identical twin, the aorta valve, while a human donor valve is replacing the PV. All numbers I’ve come across comparing the outcomes of the Ross Procedure up against both biological valves and mechanical valves, the Ross solution seems significantly better - especially for younger and mid-aged patients. The chart I've just uploaded in my photo section sums up the superiority of Ross to biological tissue valves (xenografts). Here are some examples from a fairly large and recent German study involving 1779 patients, compiled in 2016 by University of Schleswig-Holstein): - In a 20 year perspective Ross will offer freedom for re-operation for 70-90 percent of all, while only no re-op for 50% of patients in their 40s and 50s with a tissue valve; - no re-op for only 23% of patients who are 16-30 years with a tissue valve. - And the same number is 0% (!) for patients in their 30s with a tissue valve. Ouch! Consider also this: - The leading US surgeon on the Ross procedure, Paul Stelzer from Mount Sinai in NYC, having done 642 surgeries for 30 years, only had to do re-ops on 80 patients in that periode. That’s approximately 12%! - He is currently gathering echo data on 104 patients that are at least 20 years out from their Ross operation and 2/3 of those have had freedom from any trouble. Having perfected the procedure over the years, his numbers probably only will get better over time. - The “longest” patient is out 28 years and his echo looks like a normal heart – nothing wrong with either valve and both ventricles normal. I’m aware that the Ross procedure is not for every patient - or surgeon. - It’s complex. - Takes up to 9-11 hours. - It’s not ideal if you’r fragil or much above 60. - it requires that your PV is healthy being used as a spare part. - It makes a one-valve problem to a two-valve potential issue; - And yes, it does involve a risk for calcification of the donor valve over time. But if done well the numbers look good. Actually, it has impressive outcomes numbers backing it up - if done right by one of the few capable surgeons around - even despite the risk of dilatation (a "lazy" pulmonary valve suddenly hard at work in a key position) and risk of donor valve calcification. It should probably only be performed by surgeons having done at least 160-200 operations to gain the necessary routine and skill. And there’s no powerful industry (St Jude, Edwards, Bayer, Boehringer Ingelheim, Pfizer and Bristol-Myers Squibb etc.) to back it up with frequent research and marketing. No commercial product is involved! The procedure seems only to attract very dedicated surgeons ready to risk at lot to get those 160+ surgeries on the clock and ready to think in three-dimensional terms in real-time while operating - and be in the theatre for up to 9-11 hours straight every time. The infrequent choice of Ross may have to do with the fact that so few surgeons can do it, thus it has few advocates... Each carpenter likes his own hammer best... So I’m interested in hearing from ex-Ross patients about your considerations and experiences before going for this: What made YOU choose Ross? How has it been? And likewise I’d love to hear from patients NOT choosing the Ross Procedure but going for biological or mechanical valves (eligible and below 60); why you did NOT go for the Ross procedure? What am I missing here ? Why is it such an infrequent choice?

Did any of you post-surgery members end up regretting your choice of aorta valve type (biological vs mechanical)? I met a potential surgeon yesterday to discuss pros and cons of the two types. I paraphrase his take on the difficult choice: "I'll have to recommend mechanical due to your age (51) and the hospital guidelines. Earlier I would have gone for a biological for myself due to my love of off-piste skiing, but I'm not so sure any more. And you can learn to abstain from skiing to avoid constant re-ops. Three things count against the biological: 1) In patients in their 50s-60s in reality they tend only to last 8-12 years before they are calcified too. 15 years would be exceptional with your young age. They tend to calcify faster in young patients. 2) You're looking at recurring re-ops (one-two-three) in your lifetime. And a TAVR valve-in-valve can only be done once. You can't make a valve-in-valve-in-valve. So you may need more than one OHS in your lifetime. Count that in. 3) The risks for blood clots, heart infection and other complications are not better for a bio valve. The risks are actually similar, thus no benefit on possible complications. There's a 2-4% risk per year for infection for both types of valves. That stacks up, but it's the same for both. But the bio valve is not worry- or risk-free". It is indeed a difficult choice between biological and mechanical. I change my mind every morning: Lifelong "rat-poison bleeding risks" & clicking noises vs. recurring heart surgeries every decade. My life's most hard choice so far... I'd love to hear from post-surgery members about their experience with the noise of a mechanical, the impact on their sex drive/life, and how different the new lifestyle on blood thinners actually is? Do you dare to play tennis, bike or surf?

Should I choose a mechanical valve for my upcoming bicuspid aorta valve replacement or a tissue valve? That question is keeping me awake... Can you help? I'm a 51-year old Danish man, who have just joined feeling grateful to Adam and you all for sharing and caring. I'm living in Copenhagen, Denmark, and have been diagnosed with a calcified bicuspid aorta valve (88mmhg/0.7cm2). I'm set for surgery in Denmark (repair or replacement) this spring. I'm seriously in doubt if I should choose a tissue valve (with a TAVR valve-in-valve re-operation 10-15-20 years down the road when it's worn out) or go for a mechanical valve with blood thinners and the radical lifestyle changes that follows? Your thoughts and reflections will be gratefully appreciated! I guess the first organic valve on average would give 15 years, and the second probably 8-10 years (valve-in-valve re-operations seem to last shorter and be more leaky, I gather). So a total of 23 years of "borrowed time". I'd love to hear, what considerations you went through before making your choice - and how your choice is affecting your lifestyle?