Pat's Guestbook

Hi, Pat! I am sorry for the late response to your post but it seems all I’ve been doing lately is researching surgical procedures for aortic stenosis! The Cleveland Clinic, where I plan to have my surgery is recommending the Ozaki procedure, where a portion of your pericardium is used to fashion a valve so that you’re not utilizing a mechanical or bio-prosthetic valve and you have the longevity of a mechanical valve without having to use blood thinners. They’re saying my condition is critical and that it will have to be done soon. Ugh, this is a nightmare, I have absolutely no symptoms, walk five miles/day and am a gym rat!

I'm amazed at how calm you seem after TWO surgeries. dang, you make it seem like the decision to replace old head gasket bolts on my f250 6.9 idi diesel with studs.. ( I can't help automotive comparisons... valve job,etc) well, after the 500 mile break in, your metaphorical truck oughta run like a bandit. your feedback on this forum is so helpful,too, as the ' voice of experience'

Hi Pat, I have been reading up on your story and am glad to read that you are doing well following your second surgery. Hopefully by now you are home resting and have been for quite some time. I noticed that in your decision making process, you had considered the Ross procedure. I am curious to know what ultimately led to your decision to go with the On-x valve. Also, curious to know how much you are able to hear the ticking and if you've had much experience yet with home INR monitoring. I wish you a full and speedy recovery. Thank you.

Good luck tomorrow Pat from a fellow Seattlelite and OnX recipient. Fwiw, still happy with that decision as the warfarin/inr has fortunately been a non-issue and things have been going strong for 3.5 years now. Wishing you a speedy recovery!

I’ll be rooting for you! This will go well! I’m 74 and had the TAVR method done with a bovine valve at Methodist in Houston in October. I’m praying for you.

Hi Pat, I have been following your story closely as I am in my mid-forties and got a tissue valve a couple years ago as well, and will be having to decide what to do for my next go-round. I look forward to reading your posts about the new On-x you get. All will be well after #2. Just unfortunate it had to be so soon. STAY STRONG.

Hey, Pat! Hurry up and wait? That would send me through the roof with stress. I hope you're able to hang in there. We have similar conditions, but at the moment my valve is not the issue, the aneurysm is. Hope you can rest up ahead of Friday. Please keep us posted.

Hi Pat. I had a St. Judes trifecta valve put in at CC in February 2017. I’m so sorry to hear that yours failed. I’m headed back to the Clinic as I need a pulmonary hernia fixed. After my surgery (mini thoracotomy) I coughed too hard and blew out my lung! It’s very weird and has gotten bigger and painful. I’m going back to my same surgeon. Anyway, here’s to positive outcomes! Stay strong! 👍🏻❤️

Hi Pat I had a mitral repair at Cleveland Clinic on 5/20. I live 6 hours away by car. After being released from the hospital, I had to stay In the area for a few days until I could have my post op visit. As soon as that visit was over, we packed and drove home. I couldn’t wait to get home! It was a very long day and the drive was pretty uncomfortable with a few stops to get out and walk a bit. If you are equally happy with both of your potential surgeons and their plan for you, I think you probably already know which option will be least stressful for you and your support person(s). There is something to be said for uncomplicated logistics. Of course, if your list of pros/cons puts CC on top, then the travel effort may be worth it (although that is a pretty hefty travel itinerary). Diane

Hi Pat, We had surgery right around the same time, but for different issues. Very sorry to hear of the new ordeal you are experiencing, but sounds like you are determined to seek the best options for you. I am confident you will find the surgical team and plan for success as you are being pro-active. If you were on the east coast I'd have some suggestions, but you are out west. Hang in there and keep working and advocating for Pat! Best Regards, Tim Goff

Hi Pat, if your still waiting for a reply from CC, one of our other warriors taught me that if your cardiologist or even internist calls on your behalf, you will probably gain a faster reply. Good luck on your weeks countdown. I am in the mist of my research too for mitral! Just keep reminding yourself how much more reliable the surgeries are now:)

PAT I am A nurse and had 2 AVR surgeries. I am 66 yrs old. I also had St Jude valve first time , lasted only 4.5 yrs, way to soon but after my first surgery I had many issues, they think ,but can't prove my MRSA infection destroyed my first valve. So I went to Northwestern in Chicago and had a TAVIR and have done very well. TAVR was less invasive and you can do a TAVR on top of another TAVR These are things as a nurse and patient to think about. Be your own ADVOCATE, speak up, ask questions. Change your doctor from the first one you had. Research the major hospitals and surgeons and interview. I can't say enough about my experience at Northwestern, Dr Ranya Sweis and her team, excellent. Please feel free to write if you want further info. Remember every case is different which. can influence outcomes.

So sorry you are going through this! I had aortic aneurysm and aortic valve replacement in 2012 (pig tissue for the aneurysm and bovine valve replacement. They set it up for the possible option of less invasive replacement but of course we never know if that will actually be an option when the time comes. I'm a lot older than you (59 at time of the operation) and that puts a different range of complications into the mix. I went to the doc ready to ask for mechanical and he talked me out of it - which has worked out well for me so far. I have a small bit of leakage that has developed in the last two years but so far nothing even close to looking at another surgery. My surgeon's arguments were more along the line of a repeat surgery itself being less risky (in my case) overall than the long-term use of warfarin (I have other issues in regard to blood clot risks and it was still a challenge to prescribe warfarin correctly even in 2012). There was more to the discussion than that - but after a lot of reflection, I decided that it was better to go with the bovine/porcine combo. All that to say - everyone's situation is so different and what makes this kind of decision such a challenge - as you already know. I will say that I have started having some issues with the scarring and cartilage/bone integrity from the original surgery. If I end up having to have another open heart down the road, I am concerned how that would all heal back up as I am now 67. With your body actually rejecting the tissue, I would think that the mechanical has some extra "points" on that side of the scale. You are getting lots of good advice from folks and I'm sure will get more guidance from the doctors as your case moves forward. Just like your first round, there really isn't a "bad" decision on this. You are in good health overall, you are young and you had a good outcome with the last surgery - in spite of the issues with the rejection. Surgeries have gotten better each year - even though the valves themselves need to continue to improve. Just listen to your cardiologist, weigh information you receive here and from other trusted sources, and then set aside the decision-making overload and trust your gut. You have great positive factors working in your favor toward a successful surgery and outcome. Looking forward to hearing the rest of your story on your road to recovery.

Pat, Bob Ostella here, just to let you know I also had an aortic valve replaced on 9/10/2015. It was an Edwards Lifesciences pericardial tissue heart valve. The surgery was performed by Dr. Raymond Singer, who now practices in the Philly area. This valve has been researched to last 15+ years! Be well, hope your surgery goes well.

HI Pat sorry to hear about your early re do. My tissue valve failed after 11 years. I was not keen on taking anti coagulants and after some discussion I had an Edwards "Inspiris Resilia" valve implant on 22 Feb. My reasoning was that I did not want to be on anti coagulants. This type of valve is not stored in aldehyde and will hopefully be more stable, time will tell. I am also told it will be easier to do a TAVI when the need arises. Having said all that I am on Eliquis and might have to stay on anticoagulants due to having atrial tachycardia since the op. So far no side effects though. Good luck

Pat try and call Dr. Joseph Lamelas Chief of Cardio Thoracic surgery at the University of Miami. He is the #1 heart surgeon in the U.S. and will definitely know what route you should take. You will be so glad you talked to him. Tell him John White said to call him. Simply google his number.

Hi Pat! I’m so sorry that you’re in need of another valve surgery. I know how jarring OHS is, especially at a younger age. I have a rare tricuspid valve disorder and just over 9 months ago, at age 44, I underwent a tricuspid valve replacement surgery with a biologic (bovine) valve. It’s upsetting to know that someday I’ll require another surgery when this valve fails, and no one can truly predict when. It must be difficult to absorb requiring surgery again so soon...my thoughts & prayers are with you. Remind yourself of how strong you are...that you’re a survivor and this is another hurdle in your journey that you will get through! I wish you the very best. Feel free to reach out anytime for support 🙂 ~Gina

Pat, I had to make the same choice after my Bio valve (Freestyle - porcine/stentless) failed. I chose mechanical - St Judes. Onyx makes sense but doubt life is really much different. I was in my early 40s for the first one, early 50s for the mechanical. The clicking was/is a bit annoying but moreso in the first few years. I can say that my fear of living on coumadin has not been an issue. A bit more bruising but otherwise it doesn't interfere with my lifestyle much. Perhaps I do more than I should but I'm careful (e.g. ski with a helmet, good conditions and nothing crazy).

I Pat; I had aorta valve replaced August 31, 2013, at Ottawa Heart Institute, Ontario, Canada. I am now 82 years of age. I walk an average of 4.5 kilograms per day on a yearly basis. I opted for the tissue valve, so I've not required any blood thinners since the replacement and have enjoyed doing all the normal activities of life. I retired from full time work on April 28, 2018; I then cared for my sick wife, who was totally dependant on me for the last year of her life that ended March 27, 2029. I live alone in my apartment, do my own cooking, laundry and house keeping. I enjoy good health. Based on those results I woul certainly recommend a tissue type replacement valve. Joe

My first valve was mechanical and I learned to love the clicking--a comfort and an audible indicator of my health. Two years after my first aortic valve replacement I contracted a bacterial infection that attacked my aorta and valve. I now have a cadaver valve and took me a bit of time to adjust to no clicking :) I also found that only people around me with amazing hearing could hear the valve clicking and was a great convoy starter! Best of luck in your process and know that this community of hearts has you 100%

I can only imagine your dilemma...It was tough for me choosing a Bio valve over mechanical at age 63. I went back and forth for weeks before deciding on A bio valve. And Possible early Valve failure always lurks in the back of my mind ,especially prior to Echocardiogram checkups.. I do think your friends and family have a point on going for the Ony-X valve, though. It is usually a one time surgery. I actually have a friend who just had his 40th anniversary on his original mechanical valve! Wishing you peace during your wait...