Patrick's Journal

Marie Myers  Sorry to hear about your possible dilemma. It is hard enough to make a decision as difficult as this one, without extra issues coming into play. Wishing you peace in your decision making process!

Adam Collins  I was told the same thing by my surgeon who did my Ross Procedure.

He told me that there was always a chance, albeit a fairly small chance, that my pulmonary valve was bicuspid as well. He said that if it was, they would have to go with option B. Option B for me was a mechanical valve. I'm not sure why, but this was something that they wouldn't be able to know until they could open me up and get a good look at the pulmonary valve. In my case, my pulmonary valve was fine, so they were able to proceed with the Ross Procedure.

For me, I had to just trust the surgeon that he'd make the best decision possible when the time came. I had to decide that if I woke up and found out that they couldn't do the Ross Procedure and I got a mechanical valve instead, then so be it. There's not much else they could really do at that point anyway, so I just had to roll with the punches.

Hopefully, you'll be able to get the procedure you and your surgeon think is best for you, but if not, know that there are plenty of people walking around doing just fine with mechanical or tissue valves.

Adam Collins  I don't want to overburden you with options/suggestions, but another option to consider is the Ross procedure. In the Ross procedure, they replace the aortic valve with your own pulmonary valve, and then replace the pulmonary valve with a tissue valve.

https://www.heart-valve-surgery.com/ross-procedure.php

My surgeon told me one of the advantages of the Ross procedure is a lower chance of needing a reoperation. I had the Ross procedure done 2 months ago, so I haven't had it long enough to be able to personally recommend for it or against it, but it is another option to consider.

Joe Tarango  Hi Patrick, I'm 32 and had the same thoughts. Fortunately, my surgeon was able to repair my valve. As a backup plan to valve repair, my surgeon and I chose the Inspiris due to the physicality of my job. My surgeon told me the Inspiris may only last 5 years in a young patient like myself but I was willing to try it to avoid blood thinners. On the other hand, if you decide to go mechanical there a quite a few young people in this community that have a mechanical valve with great results.

Marie Myers  Yes, that is a tough choice . As much as I would like to avoid Coumadin, I still would probably do the mechanical valve at such a young age. I wish you peace in your decision making process. Keep us posted on your thought process.

Patrick Kelly  Hi all - thanks for the comments. It's really comforting to know that there are others out there who know exactly the decision I'm trying to make and the way that I'm feeling.

Adam - I did consider the Ross Procedure - in fact I've recently reached out to a doctor here in Australia about my eligibility for it. He's done quite a few which gives me comfort. My concern however is that I might not be eligible given I suffer from severe AR. I understand that sometimes that rules people out? I see you had AR - did your doctors mention anything about the interplay between it and the Ross procedure?

Joe - that is the ideal scenario getting in there and finding out your valve can be repaired. Was valve repair something that was always on the table for you? As in did you know there was a possibility or was it a happy coincidence? I would appreciate a valve repair but no one has ever mentioned it!

Marie - there definitely is a very compelling case for the mechanical, nothing more compelling than the lower chance or reoperation. I know it sounds superficial but it's actually the ticking sound of the mechanical valve I'm not sure I could deal with. Maybe I just need to make peace with that idea.

Decisions, decisions, decisions.

Adam Collins  My surgeon told me that my aortic regurgitation was "horrific," some of the worst he'd seen, and his first choice was still to do the Ross procedure. Of course, we're different people with different circumstances, so it might not work out that way for you. But in my case, at least, it didn't seem like the severity of my AR was a concern.

Joe Tarango  Patrick, I consulted with a surgeon locally that said repairing my valve was not possible. I did some research and spoke with people in the heart community that had their valve repaired. This resulted in going to the Cleveland Clinic, choosing a surgeon and having my valve repaired there. Talking with others that have gone down this road has helped my journey tremendously.

Joy Vera  Patrick, when I had my aortic valve replaced in 2010, the surgeon was initially going to do the Ross Procedure. He specialized in it, in fact. My valve was bicuspid, stenotic & in the severe category. Unfortunately, a second congenital issue (aortic coarctation) was discovered when my heart cath was done & the surgeon decided it would be "too much surgery" to fix that along with doing the Ross. Anyway, severe stenosis was not an obstacle for me but I don't know about severe AR. The valve would be removed & replaced either way so it doesn't seem like it should make you ineligible. Best of luck with your decision.

Carlos Banuelos  Hi Patrick, at the end of the day, the valve you choose is a very personal decision and unfortunately there is no bright line rule based on age. For me, I went with the on-x mechanical valve. The pros: a better chance I won’t need surgery again or at least very soon and it’s approved for a lower dose of Coumadin. The con: I have to be on Coumadin for life, and can’t play contact sports anymore. I made my decision based on conversations with a number of doctors which included my father, his colleagues and my friends who are doctors. All recommended the mechanical valve as many of them have seen and continue to see valve patients who have had their mechanical valves for 25 plus years. All said a tissue valve would likely not last more than 8-12 years for someone of my activity level. I contemplated going with a tissue valve because of Tavr and likely being able to do the valve in valve replacement down the road, but ultimately chose the mechanical option. Regarding the Ross procedure, the surgeons I spoke to did not push this option. I asked about it and they said it was not their recommended approach. I’m only 9 weeks in so not sure how things will go as I move forward, but the only issue so far has been trying to get my INR levels steady. I have a home testing kit so I guess it’s a little bit like being a diabetic. But if you’re diligent about testing and taking your meds then I don’t think it’s much of an issue. That said, I plan on still being pretty active and there is always a risk of bleeding. A tough decision to make no doubt. Good luck!

Willie Radl  Patrick, I went with mechanical (On-x) at age 32. I'd say my life is 95 percent same as before. Ticking noise was noticable for first month or two but now I don't notice it. Warfarin has been much easier than I thought it would be, I don't really feel limited by it. I.e. cuts and scrapes bruises are a little worse but definitely manageable. You can still have a few beers here and there, exercise like usual. I play pickup hockey (no checking) every week and feel I'm close to where I was prior to surgery. It a hard decision, but pick what YOU feel most comfortable with and you think is the right choice for you.

Patrick Kelly  Hi everyone just a little update - I'm meeting a surgeon in a month who specialises in the Ross procedure, here in Australia. Keen to get his views on it as an option for me - thanks for the reminder Adam!

Adam Collins  I hope your meeting goes well! Keep us posted.

Also, just to reiterate, just because it was the option I chose doesn't mean it's necessarily the right option for you. I don't want to make you feel like the Ross procedure is the only or best option, and that it's a bad thing if it turns out not to be an option for you. There are plenty of happy people walking around living life just fine with mechanical/porcine/bovine/equine valves!

Patrick Kelly  Hey Adam - yea I'm just getting my ducks in a row so I have all the information and can make the right decision for me when the time comes :)