meg's Guestbook

Wishing you a successful surgery! Sounds like you have prepared your body, done your homework and are on your way. Sending blessings and love for a great surgery and quick recovery!

Hi Meg. Good luck. I have my BAV surgery on 5/13. I'll be watching your notes as I am very interesting learning about recovery/rehab.  My thoughts and prayers are with you. 

Hope it goes well. I will be thinking of you. I wasn't aware I had a bicuspid aortic valve until my mid 40s, as I had no symptoms [although maybe I could have run faster!] After many marathons a problem only became evident when I was diagnosed with AF [again no symptoms, apart from getting even slower!] I still don't understand why anyone has open heart surgery unless they are totally unsuitable for TAVR 

Hi Meg, we are close in age I am 53. I have made an intensive research about Inspiris Resilia, and at this point it is my first choice for my valve replacement. However, I am hearing a lot about the Ross Procedure. Did you considered one over the other? How did you come to your decision?

Be sure to ask what size valve they are using. I had my aortic bicuspid valve replaced 7 years ago and now my echo shows it is a Patient Prosthesis Mismatch. This means that the tissue  valve that was used is too small for my body size. A 19mm was used. The valve is functioning normally, but the pressures going over the valve are too high for the small valve. Which means I have to go through another open heart surgery. I know the tissue valves don’t last forever but I was hoping for 10 to 15 years. 

If there is a replacement of a valve necessary the choice of a pig valve vs mechanical valve as  co I understand it mechanical could require biweekly check on how your blood thinner is working whereas you don’t have that with a synthetic pig valve which is what I have. There also could be differences in the length of each in terms of how long they last. 

I was 68 when I had my bicuspid valve replaced with an Edwards bovine tissue valve. It looks to me like the Inspiris valve is an advanced (more modern) version of the one I have. Ten years later it's working perfectly. I elected a tissue valve to avoid having to take blood thinners, and I thought that in 15 years time, the nominal lifetime of the valve, that nonsurgical replacement techniques, like TAVR, would be well-developed. They are. And for you, another 15 or more years from now, they will be even better.  It's something to consider.

Hi Meg! I hope are well, and in good spirits. My BAV was replaced last April (2023) - TAVR procedure. i got the latest model from Medtronic, the EVOLUT FX-34. The only comment that I would make concerning a metal valve is that with the availability of the "valve-in-valve" procedure now, I believe that gives patients something to think about. And with tissue valves lasting longer now, that might be something to discuss with your surgical team. So, if you got a tissue valve large enough, years down the road you could have another valve placed. I haven't read the entire thread, but I assume you will be having the TAVR procedure, as opposed to open chest. The one thing I was totally unprepared for, was that two weeks after the TAVR procedure, I had to have a pacemaker, because the aortic valve often can irritate or block the electrical impulses, since it is so near in proximity to the valve. My surgery was at UNC Rex Heart Center in Raleigh, NC. I wish you well! 

Hi Meg
I hail from Toronto, Canada where we fortunately have a number of extremely talented interventional and surgical cardiologists. Because of both a bicuspid aortic valve and an ascending aortic aneurysm, I've been followed closely for the past 35 years when these conditions were first discovered. Three months ago and after a calcium score scan and then a angiogram it was determined I needed to replace my aortic valve via a TAVR because other co-morbidities prohibited open heart surgery, which would have allowed me to have the aneurysm corrected at the same time. I basically left the decision on where and who would do the procedure up to my long time personal cardiologist and GP.  Because I knew little of valves, I let the doctors doing the procedure choose which one to use -  an Edwards Sapien 3 Ultra. Don't get me wrong I didn't proceed with either the hospital I was directed to, nor the surgeon or valve without doing my own research on all three. While the choice of the Edwards valve requires the use of a life long blood thinner, this consists merely of a coated aspirin taken daily. I'm now three weeks out from the procedure and while I may not be as energetic as I'd hoped for, this is probably due to my other ailments and age. I'm hoping that in time I'll feel much better and be more active than was possible previously. If I was younger and healthier, I might have opted for OHS, if only to also have my aneurysm looked after as well as the valve. As it is and with the rapid advances in medicine, I'm happy with the decisions made so far knowing that if necessary, deploying another valve the catheter route would be an option. Maybe some day a fix of my aneurysm can be done in a similar fashion - having options and knowing what these are the key to battling most health issues and particularly a BAV - good luck!   

Hi Meg
i was dx with Severe Aortic Stenosis at 59 with a congenitally malformed aorta. No other issues. I ended up having TAVR with a bovine valve. It will be 4 yrs in April. I was good to go in a week. I play competitive tennis, lift weights and feel great!
Good luck!

Dr. Joseph Lamelas is amazing! I opted for a minimally invasive surgery with him, getting my aortic valve and root replaced with a pig valve. It's been nine fantastic years since then. I didn't want to deal with blood thinners, constant blood tests, and dietary restrictions for life. Choosing the pig valve was simple for me; it's closer to nature, plus, who wants to live with a ticking mechanical valve and Coumadin forever? Best of luck with your decision!

I have the same thing and I just turned 63 I have and apt with a Cardiologist Surgeon next Tuesday and I am leaning to the biologic valve I do not want to take blood thinners for the rest of my life and I saw what blood thinners did to my mother who died of a stroke and had afib.  

Good to do the research. I had a bicuspid stenotic aortic valve replaced in 2014 with a tissue valve (Sorin Mitroflow). I was told 10-15 years and by that time the TAVR would be able to replace it. 8 years later in 2022 the tissue valve had failed. MRI's determined that the TAVR would not fit my anatomy. I opted to replace it with a mechanical (Abbott Regent) which will outlive me. I had the procedure done by Dr Isaac George at NY Presbyterian. I am 76 years old now. I don't ever want to face open heart again. The Warafin maintenance is not a big deal. I have a home kit and test/report every two weeks. 

Hi Meg,
The Inspiris valve is designed with a new tissue treatment that greatly reduces the chance of the valve calcifying and therefore givies it greater longevity.  In addition, it is designed to accept a transcatheter “valve in valve” procedure.  Therefore, if it ever does fail, you wouldn’t need another surgery to replace it, you could have a catheter procedure to replace it.  With this technology now available, please don’t get a mechanical valve and be subject to all the risks that come with life long anticoagulation therapy.  Find a surgeon that implants the Inspiris valve and don’t listen to surgeons pushing mechanical valves.  There are many good surgeons in Florida and I can steer you to some if you like.
 

Hi Meg,
here are some of the questions that I asked my surgeon:
- How many AVR have you performed, MI-AVR and SAVR?- Can you please elaborate on pros and cons of valve types?- Can you elaborate on the valve size to set me up for a TAVR the second time around?- Is Aortic Stenosis the only issue that needs to be treated?- Is MI-AVR a possibility for me and what is the long term prognosis compared to SAVR?  Is there enough data for long term prognosis?- What are some of the Common complications- What is the difference between Mini-thoracotomy or hemi-sternotomy?  Preference of one over the other?- Are you awake when the tubes are taken out?
- What is the recovery time for MI-AVR vs. SAVR?- What are the Risks of MI-AVR vs SAVR?- Is MI-AVR more risky than SAVR because you do not have as much visibility?- Am I a candidate for the Ross procedure?  Please elaborate on procedure, risks, prognosis, etc.- What do you know about the INSPIRIS RESILIA valve - am I a candidate for this valve?

Hi Meg: Thanks for sharing your story and I am looking forward to following your progress. I am a fellow Floridian who also has been diagnosed with a Bicuspid Aortic Valve with some stenosis. Mine is in the range of mild to moderate and is asymptomatic. I have been having an echo once a year for the last 3 years and there has only been slight change. I am 60 and active, cycling, walking, and some running. I do get some strange physical occurrences that now make me wonder if they are heart related. I'm glad you found this site as it is a great resource for those of us who are researching treatment procedures, doctors, and hospitals. One great thing is the continued improvement of medical devices and treatments that seems to be changing rapidly. It seems like the longer I get down the road without having to have surgery, the better my choices are becoming. I haven't started a guestbook on the site as of yet but I probably will soon. I am trying to stay up on the doctors that have the most experience. I think I would rather endure some inconvenience of using a doctor who is not in a convenient place but who has done thousands of procedures rather than choosing someone less experienced in order to stay closer to home. I will keep following you and let me know if you ever want to compare notes on doctors in FL. Mike michaelewynn@me.com

I had mitral valve repair 1 year ago surgeons Luis Castro & Adam Harmon at Sequoia Dignity, Redwood City CA. Allow the resurrected Lord Jesus Christ to carry you one day at a time. I look forward to seeing Jesus some day face to face in His eternal kingdom when my earth's journey comes to an end. God loves you. Read the gospel of Luke (Gentile physician) in the New Testament for strength.