Cathleen Weed  Hi Valerie - I hope you can get a repair 🌟. That would be so awesome! I don't think there's a limit to the surgeries. Mortality risk isn't that much greater the second time and increases a bit after that but as long as you stay healthy it's not so bad. Having said that, I know the surgeons were happy to qualify me for TAVR for my 4th replacement. The less invasive the better. Still love being free of the anti-coagulants no matter what but that's my own personal preference. I hear good things about the Onx valve and lower med dose requirements. It's all getting better and better. The decision process is the worst. I totally understand. ❀️

Cathleen Weed  Awwww thanks Adam!! So nice of you πŸ’›πŸ’›πŸ’›! Your site is such a resource for everyone 😊 ..I love it ❀️ and I'm very happy to help anyone who needs it! 😊

johanna oflaherty  I had a mitral valve repaired on Nov 11, at Cedars , Los Angeles. Recovery was painful and challenging but TG it's 8 weeks out and I'm feeling much better. My surgery was done robotically and , I must admit, I was not well informed and minimized the procedure. Robotic surgery is not a simple surgery but rather major surgery so be prepared and please make arrangements for someone to care for you. God bless and thanks for your sharing.

Ben Hyman  Hello Johanna; I'm scheduled for a Robotic Mitral repair at Mayo Clinic Rochester in March for a severe leaking valve. The surgeon is estimating I'll be out for about a month. I'm 59 and otherwise healthy with no symptoms. Your account along with many others contradict this surgeon's estimate of recovery time. I'm submitting paperwork for short term disability and don't want to short change myself. How long would you estimate It will take before I can go back to being productive after this procedure?

Rita Savelis  The surgeon is "estimating", as recovery time could be shorter or longer. It varies, and it can be hard to compare yourself with others.
Some patients go back to work part time at first, as one can be very tired for the first weeks/months.
But you also could feel great early.
Wishing the best for you.

Cathleen Weed  Hi Paul,
Yes from what I recall about TAVR is that they would 'prefer' to do it on an already existing tissue bioprosthetic valve because it's a better fit and the size can be determined ahead of time. The valve they use is a specially designed bovine valve for TAVR. There are two types of bovine valves being used right now for the procedure. Mine was an Edwards Sapien valve but I forget the other one. It's a different company (manufacturer). I also know that they prefer valves that have stenosis versus regurg (which generally happens with bicuspids, that was my initial problem). After the aortic aneurysm blew out the Ross procedure in 2005, I had a bovine bioprosthetic tissue valve placed (also Edwards) and that became stenotic in 2015 at which time I had TAVR. :)
My donor allograft (cadaver) pulmonary valve was placed in 1994 and has a "mild" regurg but they said it was fine (so fingers crossed on that). πŸ’›

Paul Wells  Cathleen. Thanks for your response.
What different outcomes from some simular procedures.
You had your cadaver pulmonic in 1994 and it's still working for you 23 years later.
I had my cadaver pulmonic placed in 2001 and it stenosed withen a few years. By the time I talked my Drs in to replacing it, the 28mm valve had stenosed down to 14mm rectangular. The next valve could only be sized to 25mm. The heart enlargement has left me with a right bundle branch block. This porcine pulmonic valve is showing signs of stenosed at three years.
Unlike you I have been told twice no TAVR after ROSS. But I have just read that the CORE valve has been approved for TAVR after ROSS in the Aortic position. The difference being that the CORE valve is self expanding nitonal.
I understand you love of fitness.
I also was a runner, biker .triatholete.
Now with an EJ of 51 and a stroke volume.of 37, enlarged chambers, heart block and disrhymia . I become short of breath with minor exertion. I so much miss biking and running.
Because of regurgitation of a prosthetic tissue valve several cardiologists recommend no more weightlifting or Isometrics. In fact I was told a limit of 20 lbs. The rules told me were no straining grunting groaning gritting your teeth.
I have also read this on reliable sites.
At this time my Drs have no plans to improve my quality of life. Just wait till something goes critical.

Ben Hyman  Thanks Cathleen, unfortunately it doesn't work that way. The surgeon has to fill out the form and estimate how long my recovery will last. I have up to 12 weeks but he estimated 1 month. If it goes longer, I'll have to have the surgeon fill out new paperwork to extend my FMLA. Hopefully I won't need to.

Cathleen Weed  Hi Paul :) I have similar guidelines for weightlifting due to the pressure on the valve. I am careful to only use light weights now (literally only 8 to 10 pound dumbbells) and have increased my reps accordingly. I'm SO sorry you are facing all these challenges. To be unable to perform to your potential has to be so frustrating. Quality of life is everything. Are you willing to contact Dr Trento at Cedars Sinai in Los Angeles? He performed my 3 OHS and was instrumental in getting me approved for TAVR which was performed by his colleague Dr. Raj Makkar. Cedars Sinai is a teaching hospital and they seem to be ahead of the curve for everything. I so hope you find a solution. It's not fair to have to live that way when you are such an athlete. Let me know your progress!

Cathleen Weed  Hi Ben...tell your surgeon that apparently you are much more active than he is lol. Regardless, you'll be back to doing "normal" things pretty quickly but your workouts with weights will take more time. You'll know as you go :)

Cathleen Weed  Hi 🌟 I know what you're going through. I felt the same way about Coumadin. I followed my instinct about how I wanted to live my life. It's a big decision. So many new breakthroughs happening now which are very encouraging for heart valve patients πŸ’›πŸ˜Š. I'm sorry this is happening. Keep your courage up and make the decision that feels right to you. We can't predict the future but we all know ourselves well enough to know what we can and can't live with. There are pros and cons to everything. Hope you find a solution you can be at peace with ❀️.

Cathleen Weed  HI :) I know that TMVR is the next big thing they are working on. My understanding is that the anatomy of the mitral valve and where is attaches is more complex than the aortic valve and therefore they have to develop a valve that can be delivered via catheter that will work in that position. I get your dilemma about the valve type. It REALLY does sound like they are going to repair it with those odds though. If not, this is just MY opinion but I would still get a tissue valve. Things are moving so fast in the cardiac world now and the likelihood of a less invasive surgery ten years from now seems pretty high. I've never regretted my decision.

Cathleen Weed  Hi :) The crown is actually a bovine tissue valve but it is made specifically for TAVR so it has that design lol. I love it! :) TAVR valves are all bovine tissue. :) Also, if you are hoping for a TMVR, I do know for a fact that the valve they are replacing (pushing to the side) has to be a prosthetic tissue (bovine etc) for them to do that procedure. Just another thing to consider.

Cathleen Weed  I went back and added "bovine tissue" to the crown photo just now lol. Thanks for pointing that out!

Cathleen Weed  That's great news about the valve! That should put your mind at ease :). I've had surgery on a Thursday (July 30) before the 4th of July weekend! Everyone seemed to leave for vacation homes in Jackson Hole, Wyoming the next day lol. I definitely prefer the beginning of the week!
Yay you have my book! I kept it very basic and I use it as an intro to my online Heart Healthy business. I do specialized meal plans and fitness programs for heart patients and non-heart patients who are trying to stay that way! Anyway, it's super rewarding and I really enjoy it. I'm working on a new membership site right now. Super excited!
So I hope you do something fun this weekend and enjoy yourself. This will all go by so quickly you'll be shocked. Pretty soon it will be life as usual but with a new appreciation and one heck of a story to tell!

Cathleen Weed  Hi Valerie,
I know you must be frustrated right now with so much happening at once. It's no fun at all. I'm glad you found this site. Adam did such a great job setting this up and bringing a community together. I'm so glad you wrote to me.
My choice of valve was purely to stay away from Coumadin. I've never regretted it. My life is so normal and wonderful. I'm so grateful. I can tell you that life really does go on after all this craziness. xo

Valerie Archual  It's been awhile since I posted the above. I think I am leaning toward a tissue valve as well the blood thinner thing is totally freaking me out. I am praying for a repair which a bigger facility gave me a pretty high percentage so that will be a blessing. Did you tell me you have had your tissue valve replaced since the initial surgery ? I thought so but can't find the message. I have spoken with so many people, all the info could be getting jumbled in my brain at this point. How long was your recovery time and did you have open heart or robotic surgery?

Cathleen Weed  Hi that's great news that they may be able to repair vs replace your valve. That would be awesome. Yes I've had other full open heart re-operations with recovery time being about the same as the initial surgery. My most recent was a TAVR though and that was the best! It really is the future for re-do tissue valves. I left the next day and was back to normal quickly. <3

Valerie Archual  The TAVR was done through open heart? How many open hearts have you had, and it there a 'limit"? These maybe stupid questions so forgive me..

Amy Steele  Ray - I'm with you and Cathleen about going with tissue valves. I've known all my life that I'd need valve replacement surgery sometime in my lifetime. I made up my mind a long time ago that I didn't want to be on Coumadin. There are just so many things I like to do that would be too risky. I know that some manage active lifestyles well on Coumadin, but I knew that it wasn't for me. My husband tried to talk me into a mechanical aortic valve. Since I also needed aortic root replacement, he was fine with my decision to have an all-in-one Medtronic Freestyle aortic valve and aortic root. (Very good flow dynamics) I asked my surgeon what he would do in my situation, and he said that he would definitely go with a tissue valve. He's in his early 50's (about my age) and leads an active lifestyle, plus he confided that he's a terrible patient and would have a hard time keeping up with his meds. I personally think that the official estimates on the lifetime for current tissue valves are on the low side as to avoid lawsuits and inflated expectations. Plus, even if I only have 10 to 15 years with my current valve, I expect that the options and technologies in cardiac surgery will keep improving over those years. It's so good to hear that your friend is doing so well after 14 years and I know that you will be very happy with your choice. You are in my prayers as you prepare for surgery and for a speedy and smooth recovery.

Cathleen Weed  Hi Elliott!
Thank you! Really happy you are going to
Dr Trento! Say hello for me lol ❀️. I know you are going to do great too!! I'm here if you need me! 😊

Cathleen Weed  I will gladly come say Hi and bring you a book (with heart healthy recipes) once you are moved to a private room at Cedars Sinai 😊 Let me know if you'd like a visit πŸ’›

Cathleen Weed  Lol yes Hello Kitty slippers are magical ❀️
Thank you for your kind words πŸ’›. I'm happy to hear that sharing my story is helping other people in the same situation 🌟. We are all in this together!
I chose a bovine tissue valve each time because the first time around I was only 19 and a mechanical valve wasn't a good option at all based on the potential Coumadin side effects. Following that I basically just decided that I never wanted to be on Coumadin for personal reasons (I'm super active, travel a lot out of the country , and am a health/fitness enthusiast, etc). Ultimately this decision worked out as I was able to get TAVR this most recent time. I enjoy the freedom I feel not having to take meds. It's a personal choice for everyone and a tissue valve does mean a re-operation for most (but now hopefully TAVR)., so there are pros and cons. From what I've heard, most people get used to the sound of their mechanical valves if that's your main concern πŸ’›. You can even ask if your cardiologist can put you in touch with someone local who would be willing to let you listen to theirs at the office. 😊
I know how you're feeling! It's a big decision ❀️

Ray Farmer  Thank you that was very helpful, I am moving in the direction of a Carpentier-Edwards PERIMOUNT valve. A friend has a mechanical mitral valve (that I knew nothing about until they heard of my surgery) but it does make a distinct 'thump'.

Cathleen Weed  Hi Ray, I noticed on the news feed that you are still in the decision phase about your valve choice. I also get the distinct impression that you want a tissue valve. I was pragmatic about it too but ultimately decided to be an idealist lol and chose the tissue valve because every cell in my body was pulling me in that direction. I knew if I didn't follow my instinct I would be SO bummed every time I had to deal with Coumadin, side effects, appts, valve noise, food restrictions, activity restrictions etc. and I've never, ever regretted my decision. Not once, ever. If you want the tissue valve because you want as close to a normal life as possible, just go for it. I take a baby aspirin each morning, I eat what I want (no restrictions-although I am a very healthy eater), and I do what I want (super active and into fitness). TAVR is the next big thing for re-dos anyway. TAVR can only be done if you have a tissue valve btw. If anything goes wrong with a mechanical valve (which does happen) you would have to have an OHS again. As you know, I had TAVR done last August...so EASY compared to OHS. It will be available everywhere in the future. When I had my 3rd OHS in 2005 technology had already advanced so significantly in the decade between my 2nd and 3rd that I KNEW something like this (TAVR) would be available for the next one so I chose the tissue valve again...and it was the best decision (made under great pressure in one day due to the urgency back then) and wow am I happy I chose a tissue valve because this last re-do with TAVR was the miracle I'd been hoping for and dreaming about 😊❀️. Ten years from now, geez how cool that's gonna be! I only say all of this because I can feel your decision is a heavy one. Follow your instinct. It's your life, you'll be the one living it. πŸ‘
So that's my story...I don't lay it out like that very often because I know everyone has their own reasons/needs for choosing certain types of valves. Personally, having dealt with OHS valve replacements since a young age, I'm very happy with my choice. I know my life wouldn't be the same if I had gone the other way. 😊

Ray Farmer  Cathleen, you read me like a book. This decision does weigh very heavily with me. I work in aerospace and we design and test components to last well beyond the life of the aircraft, I’ve seen how mechanical valves are made and my head says go mechanical but my heart, (ironically) says go biological. I can’t sleep if there is small quartz clock ticking in the room but the thought of doing this twice is un-nerving, even TAVR, (but then, I know people who have had this done four times and are thriving..….!). I think perhaps it’s β€˜psychological’, ……they can’t do the operation on me until I decide on the valve…..:|
The younger medical people I speak to all believe in 5-10 years TAVR will be perfected. All the older medical people including my initial surgeon seemed to prefer mechanical, but said I was in a β€˜twilight zone’ where either one would be suitable. My gut feeling is to go biological and as you say, I think I would regret it every time I had to deal with Coumadin etc. etc.
Thank you Cathleen, you have helped me make up my mind, unless they come out with a proven, silent, Coumadin free valve by next Friday, I think it’s the bovine valve.
I will have to get your book, I have spent my life trying to eat healthily but always more to learn, thank you.
Can I ask you:
What is the acronym β€˜btw’ you used and what make of valve do you have?

Ray Farmer  Oh, and how long do they think your latest valve should last, I am reading current ones (aortic) should last 15 - 18 years although not yet proven?

Cathleen Weed  So I wrote a nice long response and then went to edit it (add to it) and hit delete instead (yay me!)...Let me try to remember it..hahaha.
I really, really, really, (really) do understand your dilemma! Your post made me laugh...I definitely get it.
Btw is By the way :)
I have an Edwards Sapien 3 bovine valve made specifically for patients having TAVR. It's really an amazing valve. My surgeons feel very strongly that this valve will have the same life span as other bovine valves because I'm healthy. A lot of the estimates in the initial research stated a 5 year life span. That was because the patients in the first high-risk trials were mostly elderly with other co-morbidities ( kidney disease, diabetes, pulmonary issues) and so were unable to survive OHS. That's why they were used for the trial. Five years is a long time when a certain immediate death was the other option. Your estimate for the bovine valves is correct. Also, the older you are the longer they last. Even when I was a young hyperactive patient my bovine tissue valves lasted 10-11 years. Now I'm young-ish lol and still hyper so I expect about the same or maybe a little longer lol. TAVR was just approved for intermediate-risk patients (btw) :). Next it will be approved for low-risk patients. I was approved during the high-risk phase due to my previous 3 OHS and the surgeons thought they'd give me a break..ha. It truly is an easy breezy procedure. It's kinda like an angiogram on steroids. The confident and almost cavalier attitudes of my surgeons made me rest easy lol. I left the hospital the next day. Any short term risk with TAVR, in my humble opinion (IMHO) ;), is still lower than the risks of lifelong anti-coagulants. My surgeons at Cedars Sinai feel very strongly that this is the future. Another term for TAVR is "valve in valve". They can do it again on me so that's exciting. I feel like a trailblazer. It's the least I can do lol. Anyway, I don't like to be polarizing on here because like I said before some people don't have a choice and others really are happily living with a mechanical valve (I think). I just know myself so well and I am in LOVE with my choice.

Ray Farmer  Cathleen thank you so, so much for your reply and typing it out all over again, (I have done that so many times). I wanted to be sure in case I was missing something - btw (bovine tissue with extras… or something), and I want to make sure they put in a TAVR compatible valve. My surgeon has suggested an Edwards Aortic 2900. Sounds like a new Lear Jet.
And thank you, your post made me laugh out loud, (MMLOL):) and I could do with that right now.
I have learnt more from you of the things I want to know about than the surgeons, thank you for time and being so positive. PTL for trailblazer’s!

Cathleen Weed  Lol awesome reply πŸ˜‚
It's great getting to know you! I hope my experience has been more helpful than confusing lol. If you like to read medical journals as I do (being a nurse and a patient), here's a great article from last year..
http://www.acc.org/latest-in-cardiology/articles/2015/03/03/09/28/surgical-aortic-valve-replacement-biologic-valves-are-better-even-in-the-young-patient

Cathleen Weed  ...oh and just to clarify (in case I never said this out loud - ha), I don't hear my valve at all. πŸ’› I've never had an audible sound with any bovine valve (and I'm thin). The heart itself beats harder/faster for awhile following heart surgery but that returns to normal with time. πŸ‘

Ray Farmer  Cathleen just read through the above, a few worrying points but reinforced my decision about the bovine valve. Also, just ordered your book from Amazon, ready and waiting for when I get back home.

Cathleen Weed  😊 I think you'll be amazed at how great you feel when this is all behind you!
Hope you enjoy the book πŸ’›πŸ’›πŸ’› Always feel free to email me directly at hearthealthylifecoach@gmail.com with any questions (pre or post surgery)! I'll answer as best I can πŸ€“πŸŒŸ

Cathleen Weed  Hi Maggie ❀️ First let me say how very sorry I am to hear of your son's passing. The worst thing any mother could go through. I watched my mom go through the same with the death of my brother. My very heartfelt condolences to you πŸ’”. I was in the hospital recovering from my 3rd OHS on the one year anniversary of my brother's passing. Let the nurses know. You will find a lot of compassion in them. You have so much courage. I know it's true because you are here and facing a huge challenge and are so very brave to choose to face it and live on. Not everyone makes that choice. Being afraid and doing it anyway is the definition of courage. I hope you know this about yourself. There are many heart warriors on this site who know exactly how you feel. I was scared too. I chose to replace the "what ifs" with "what next" and focused on that. I'm glad to hear you are planning out your future after surgery 😊. It helps so much. Let the surgeon do the surgery and you do the healing, that's your job πŸ’›. This can be a new beginning to a healthy and strong next chapter. I hope you enjoy the book ❀️. Please let me know if you have any questions.
Your heart sister,
Cathleen πŸ’›

Cathleen Weed  Thanks so much for your note Marie 😊❀️. I hope you love the book! I put some fitness info in there too 🌟. It will get you started in the right direction 😊. The recipes are delicious and heart healthy πŸ’›. I would suggest setting a goal for yourself and finding a workout buddy to keep you accountable. It doesn't even have to be someone exercising next to you...just another friend or family member who commits to a fitness program too so you can check in with each other before or after workouts to motivate each other ❀️. In addition, eating a healthy, nutritious diet is so important. If you use the treadmill for your cardio you will lose weight each week if you keep your Heart Rate at 70% of max (called Target HR) for at least 30 minutes of each cardio session 3x a week. I calculated your Target HR (based on age) and it's 107 bpm (beats per minute). If you don't have a HR monitor you can check it yourself at intervals by taking your pulse at your wrist or neck for 10 seconds and multiply by 6. Of course always get clearance for an exercise program from your physician who knows your particular cardiac history. I've found that if you schedule your exercise one week out (ex: Cardio: M-W-F from 3-4) you will be more likely to stick to it. You can monitor your progress that way too. Plus after you get started on a program you'll feel so great that you'll want to keep it up. "Energy creates Energy". Best of luck with continued healing!! xo Cathleen ❀️

Civita Fahey  I bought the book, too, I'm not a vegetable person, but I need to start.. there are some good recipes in there

Cathleen Weed  Yay!! πŸŽπŸ‘πŸ‡πŸ πŸ…πŸπŸπŸ†πŸŠ Fruits, veggies, whole grains, beans and legumes, lean chicken or turkey, very lean beef, fish...all great choices 🌟 Plus delicious smoothies and healthy dessert recipes in there (my book) 😊

Cathleen Weed  Hi Barry! Cardiac rehab is amazing but I would say that the only benefit you may personally get from cardiac rehab is that you will be hooked up to the monitors while you exercise. The cardiac nurses will be able to tell you if you have any unknown spikes in BP (essential hypertension) and that sort of thing. You could always go for just a couple weeks and then opt out. Having said that, it sounds like you are doing awesome so it's totally your call! I'm glad you are doing so well!!

Judy Baurle  I have a defective aortic valve, diagnosed in Feruary. I've got a follow up echocardiogram scheduled for August 31st. Since it was almost to a surgical point then, I'm sort of anticipating an upcoming surgery ! Getting a bit nervous L Ild like to hear from people who had this done at Albany Medical in Albany, N.Y.

Cathleen Weed  Hi Sophia! I'm so happy you ordered the book! I hope you enjoy the recipes 🌟! CoQ10 is something I recommend for every heart patient. The benefits are amazing. Magnesium is great for blood pressure because it relaxes the blood vessels of the heart. Cayenne pepper does that as well! I like GNC for my supplements. πŸ˜ŠπŸ’›

Cathleen Weed  Judy...lots of people on here who can give you great advice and hopefully put your mind at ease πŸ’›.

Cathleen Weed  Hi 😊 Yes I had a dental appt prior to the endocarditis but I also had a very bad cut in my mouth from an accident in the ocean. So they didn't quite determine the cause. Just take your antibiotics for dental and if you ever have a mouth injury be sure to see a doctor (I didn't know back then!). Everyone is a carrier of the bacteria that causes endocarditis. It mostly lives in the mouth. A certain amount of it would need to enter the blood stream (via injury) and end up on your heart valve. Take good care of yourself and you'll be just fine! 🌟

Luke P  Thanks Cathleen. I'm almost 3 weeks post-op and visited my cardiologist this past week. I asked him about this and he said for regular cleanings I didn't need antibiotics, only for more invasive treatments. I was a little surprised, I'd like to hear your perspective. Much appreciated.

Cathleen Weed  Im surprised he said that! You definitely need it for the cleanings because your gums bleed. It's not worth the risk. In fact, every dentist will require it if they know about your valve. 😟🌟 I would just do it. The dentist calls in the prescription for you anyway, not the cardiologist so it doesn't matter what he thinks lol πŸ‘ p.s. I bet if you asked the surgeon he would say 100% take the antibiotics.

Cathleen Weed  Hi Nancy! It's available in 13 countries and I believe Canada is one of them πŸ’›. Here is the link to use http://amzn.to/2asdxgN
🌟 Let me know if it doesn't have Canada and I'll check into it 🌟. I'm glad you are feeling better!

Cathleen Weed  I'm so glad, and I know the surgeon you met with expressed the same feelings about your pulmonary valve so that should help your peace of mind! I can't wait for this to be over for you and your family! You're going to feel so much better and get on with an amazing life!

Cathleen Weed  Hi! Yes the TAVR is awesome! It was scary being younger than most patients without having much data about it, but so far so good!! Very, very happy with the results! No complications <3. The valve is a bovine tissue valve and is very similar. It was made to be rolled on the end of a catheter and then inflate in the aortic position. Very cool! Stoked to hear about your recovery! You are so fortunate your native valve lasted so long! TAVR will no doubt be improved and approved for everyone by the time you need anything else done :).

Cathleen Weed  Hi Jason :) I was just thinking about you yesterday because I was at Cedars Sinai for a follow-up on my TAVR. They checked my donor pulmonary valve also from my Ross Procedure in 1994...it's almost perfect still 22 years later. Also, pulmonary valves have been approved now for transcatheter placement (not sure how far along they are but definitely will be a future option if needed). This is a link to the company that made my TAVR aortic valve...it's their new pulmonary options...and if you ever needed another valve after this I'm sure this would be common...
http://www.edwards.com/eu/products/transcathetervalves/pages/pulmonic.aspx
I just really believe you should get the tissue valve. Honestly, in that pulmonary position it's going to last a long, long time...maybe forever now. I know you are having issues with your previous one but valves and surgeries are better at this point and you'll be choosing a great surgeon. I would never, ever risk clotting or the coumadin risks for the mechanical pulmonary valve because it's on the right side of the heart...there's hardly any pressure there compared to the left side. You can go back to normal life with a tissue valve. Plus you are 33 now so it's not like you're a kid totally wearing it out or whatever. If I were you I would absolutely listen to the surgeon who visited (from the UK I think you said) and get the tissue valve. Maybe you've already decided on that but I just wanted to say it again! lol
So as far as surgery and re-operations..the increased risk is so small it's not even a worry. Scar tissue on the heart and around the valve is the main concern...because it bleeds more. They will be ready for that though. They will have a better idea of what happened to your valve once they get in there.
My recovery was about the same at 33 as the previous surgeries. Totally doable. I know it's a weird feeling because you actually know what to expect...which can be a blessing and a curse! I get it. However, you will do great because you are young and strong. If you've stayed active then your lungs are strong and that's the biggest hurdle. It was a few months until I felt normal again..and the emotional stuff..but by 6 months I was totally healed for sure and back to totally normal life and activity level. (I was back in the gym by 8 weeks doing low impact aerobics and cardio and then weights again after a few months). And of course back then there were no future options in the works..so I basically thought I'd be having OHS again in 10 years because I chose the tissue valve and that was okay with me. It was TAVR instead though and that was awesome!! I love technology <3. You just never know what they'll come up with next so live your life now and enjoy it to the fullest :). Don't worry about this being the 2nd time. If anything, it will go better than the first! They've come a long way! <3

Cathleen Weed  Hi Civita! Thank you for writing :). I hope I can help you in some way. Yes, I've always been in favor of tissue valves. My #1 reason is to stay off the Coumadin. That's just my preference. I was young when this all started (19) so a mechanical valve wasn't really even an option anyway (Thank God) so it was never pushed on me. From there I just realized that I really enjoy my active lifestyle and the fact that I hardly have to think about my heart, other than just staying in great shape and eating well. On the other hand, yes there are the surgeries. For whatever reason, the thought hasn't bothered me. I'm pretty stubborn lol but I'm also strong and I know this about myself. So I just stay super healthy and that way when the situation presents itself, I'm ready. It really is something you have to weigh for yourself. You sound like you are an active person as well. That will be restricted on Coumadin of course. Boxing won't be something you would probably continue. Too risky. The list goes on and on really. So it just depends on what your intuition is telling you. It's a difficult choice and I'm sorry you are facing it. I'm sure you are frustrated. Many surgeons do recommend the mechanical valve for longevity. My surgeon (Dr. Trento at Cedars Sinai) has always been on board with my tissue valve decisions. When I went in for my latest replacement he was so excited to qualify me for TAVR instead of OHS. It was the miracle I was waiting for :). They believe my next one will be TAVR as well (hopefully a long time from now). It really is the future, and while "not everyone will qualify", I do believe it's going to be very common eventually. I was just at Cedars Sinai all day yesterday for a follow-up ( CT scan, echo, ekg, labs ) and everyone there is very excited about TAVR. The surgeon who did mine (Dr. Raj Makkar) is #1 in the world and has done more of them than anyone else (over 4000). He did seven more yesterday while I was there lol. So that's my 2 cents <3. I hope it's helpful. I guess the take-away is to listen to your instinct. OHS is no fun at all and you won't enjoy it but it's one day out of your life (plus recovery) and then you live a long time of daily life with the valve that's in there. Some people are fine with the Coumadin. I'm okay on my "installment plan" of 10 years or so (lol) because my life is my own during that time. xo

  Thank you Cathleen. I hope I can make the right decision.. I don't want to be limited while I am still fairly young ( actually very young lol).. I do believe that TAVR will be the way to go soon. .one of the surgeons did say they are now testing on low risk patients as well as moderate risk and they are doing fine.. so, yes, in the next 5 years or so OHS maybe obsolete.. I hope so.. I don't know when this will happen, maybe be 6 months, maybe a year.. I am trying to get as informed as I can and not let anything persuade me in one direction.. the thing is that a mechanical cant be changed by TAVR if anything were to happen and as you said, they do.. its less of chance but there are failures.. I thank you for your helpful advice and I hope you continue your path to good health. Civita

Cathleen Weed  Yes, I didn't want to say that..but if anything goes wrong with a mechanical valve you won't qualify for TAVR. These are all "what if" scenarios so it can't be predicted of course. The studies on low risk patients are happening now...I was qualified simply because a 4th OHS made me "high risk" even though my age and overall health made me low risk. So I'm a unique situation. It couldn't have gone better. They will work out all the risks (surgical stroke, pacemaker etc). It's still new-ish but is already very common, although mostly in the advanced age population. That's why it's been difficult to collect long term data..because most patients are so old and have other comorbidities ( a second chronic disease like kidney disease or diabetes etc) so they don't live very long after surgery anyway. In my case, I was super healthy going in and it's been smooth sailing. You are at a unique age because 10 years from now they would probably suggest a tissue valve for you anyway...it's so weird. Let me know if you have any other questions for me <3. P.S.
I know it's probably extra frustrating for you because you are facing so many unknowns, having never had an OHS before... and now there are so many advances for the future.

  exactly so many decisions and the waiting game is driving me nuts.. My cardiologist felt my stenosis was severe, the surgeons felt it was borderline moderate/severe.. no symptoms at all, so, I wait.. I mean I don't want to have it of course but I know its inevitable, I just want to have all the info I need. I also work in healthcare but on a compliance side, so, a little knowledge is lethal.. lol.. I hope that my wait is long enough to be able to have a biological and the chance at a TAVR if needed. I fear Coumadin and its limitations. I have spoken to people that say its not that bad, but, they aren't as active as I am and I want to continue to be.. age to me is a number.. I have no other issues, so my risk is very low and I know it will come out fine in the end as all of you have proved, but, its just which way to go that is driving me nuts!.. I love how you live in the moment, I wish I could be like that. I'm a planner.. I have to see things laid out in front of me.. I have my next echo in 3 weeks. we will see if there is any change.. I am leaning towards the biological . I think I need to do more research on the types etc. I haven't had a cath yet so I don't know the size needed etc. My surgeon did say if they could put in a large valve that may give more time,but the normal bell curve is 8-15 years .. I'd take 15 and hope that I stay healthy with no comorbidities at that point in time and be able to have a TAVR with still a low risk..

Cathleen Weed  Yes I totally understand 😊. You may want to write to Connie Romo on here also. She was going through your same decision process when we started writing. She just met with Dr. Trento last Monday and she is doing what you just described (larger valve now for TAVR later) so that she can get a tissue valve. She could probably share some specifics from her discussion. πŸ’›

Cathleen Weed  Hi Adam <3 Thank you! It was a follow-up on my TAVR from last August. Everything looks good so far! :)

Cathleen Weed  Adam...p.s. thank you for the EDIT feature on this site lol...I always forget something and it's nice to just go add it in the original post <3 (although I'm doing a new one for this!). I didn't have anything like this when I was having my surgeries so it's great to be able to help others by sharing my experiences. <3 I've always been pretty outspoken about heart health, nutrition, and fitness and now that I'm also a nurse it's literally a part of my DNA to help others lol. God Bless <3 I edited this..lol

Cathleen Weed  Hi Nancy 😊 I believe you will be pleasantly surprised by how well you can do through this ❀. You'll make adjustments as needed but so many other areas can actually IMPROVE in pre and post surgery life so don't worry about what you can't do...focus on everything you CAN do and get stronger than ever in those areas πŸ’›πŸ’›πŸ’›. My heart valve issues haven't hindered me..if anything, they've made me super strong. Who knows if I would have gotten so into fitness and nutrition if I was born "healthy". I stay healthy and strong for whatever comes next. My motto is "STAY ready so you don't have to GET ready". I feel fortunate to be so enlightened to what's important because of all I've been through. Without a doubt, I take better care of myself than any of my friends or family and because of that I live an amazing, active, quality life. It's truly a mindset. Please let me know if you have any questions or would like any help! xo ❀🌈

Nancy Schnarr  Thanks Cathleen!

Did you have to limit yourself with exercise? Did you follow any kind of plan, or did you just make it up? I had been doing a weightlifting class but now I'm wondering if maybe I should just stick to yoga and pilates instead. I've also read about your thoughts about tissue vs mechanical and I'm opting for tissue even though I know it means another surgery in the future - but since I'm only 30 now I want to avoid blood thinners for the time being!

Cathleen Weed  Totally get that! I know it's a hard decision at 30. My third one was at 33 and I could have gone either way...very happy with my choice..especially since I was able to do TAVR this most recent time at 44. I would stick to the yoga and pilates and for weight training I would only use 5 pound weights for toning until after your surgery...just to be on the extreme safe side. I do follow a plan...I am a certified fitness trainer and a nurse. I just wrote a book on Heart Healthy nutrition as well. The main thing is just to NOT give up on your fitness routine. Continue to stay in the best shape you can stay in so that your lungs and body are the healthiest they can be. Follow a good nutrition plan...I like the 40/40/20 rule...40% super healthy whole grain carbs/40% lean protein/20% healthy fat (nuts, avocado, coconut oil etc)....plus a minimum of 1L of water a day...I do 2L a day. You'll be super strong going into this. <3 If you need any meal plans let me know, I'll send them because you are a heart sister now :)

Cathleen Weed  ..and p.s I know it's hard to believe now but I hardly ever think about my heart valve...I just live my life...and after it's all said and done, you will too. Like I said before, if anything it's made me better. :) xo

Nancy Schnarr  Thanks for the awesome advice! I honestly would love to take you up on the meal plan offer - I'm a fairly healthy eater but I want to try and be as good as possible! I just read you are in for a full workup, hope all is coming back positive!

Cathleen Weed  Hi! Yes, all went well yesterday :). Don't have the CT scan results yet but my valve and heart looked awesome on the echo etc <3. Do you want me to post meals on your page or email you? Also, if you don't already, be sure to start taking Omega 3's and Vitamin C every day. :)

Nancy Schnarr  Whichever is easiest for you is great! My email is nmschnarr@gmail.com. Glad to hear things went well yesterday!!

Cathleen Weed  Awww thank you Amy!! I'm happy to hear that :). I've been watching your journey and cheering you on all the way <3. Your courage through all of this is evident :). This isn't easy so I'm glad you are finding support here! xoxo

Cathleen Weed  Thank you :) That's really nice to hear :) I'm trying to share my experiences and the things that worked for me. If they help someone else, that makes me happy <3. I super appreciate your post!

Cathleen Weed  Hi Michele, it's always a tough and personal decision for everyone. As you know, there are many factors involved. It's so ironic that mechanical valves are recommended for younger patients because the risk for a future surgery is lower (not zero, just lower) but it's the younger patients who are the most active and don't want to be on coumadin for life. So, there lies the conundrum. It's a dilemma. As younger patients we are left to choose between life-long anticoagulation risks and a possible future surgery OR a life free of anticoagulants and a definite future surgery. In my case, having another AVR was fine with me if it bought me ten years at a time off of coumadin because I am very into fitness and nutrition. I call it the 10 year "installment plan" lol. Now TAVR is here...what a miracle. Again, not everyone will always qualify and it's fairly new so only time will tell. A little about TAVR: A special bovine tissue valve is used with TAVR because it has to be rolled up on the end of the catheter that is threaded through the femoral. It's a much larger catheter than is used for a cardiac catheterization. You are fully sedated, intubated, and a central line is in place just like with OHS because there's always the chance of them having to scrap the TAVR midway through and do the OHS. They don't stop your heart during the procedure. Instead, they temporarily speed your HR way up during the placement part of the procedure so that your heart sort of "stops pumping" for a minute. There are risks of needing a pacemaker after (I didn't) and of course a stroke risk mostly within the first 24 hours post-op (I've been fine). I woke up with a black sharpie line all the way down my previous OHS scar because they considered opening me up instead midway through when they were having difficulty crossing the new valve through the old stenotic one. That was weird to see! Thank God it worked and thank God I was in the care of the best in the world (Dr. Raj Makkar, Cedars Sinai) who was able to complete the TAVR. I went home the next evening...because I'm stubborn..lol. It's not easy, it's still exhausting and still takes a physical and emotional toll. So those are the realities. I'm hopeful that even more amazing breakthroughs in the cardiac world will take place in the future! I STILL would do it all again to avoid coumadin. That's just me. Again, I am very active, travel a lot, and dislike medication in general lol. They are researching new blood thinning techniques though to get people off of coumadin. Nobody likes that stuff. So that's promising for everyone. To answer your other question, yes they would have to adjust your coumadin for any other invasive procedure...and if you have ulcers I would definitely discuss that risk with your doctor/surgeon. I wish I could be more help to you. I guess I would say just be honest with yourself and weigh the risks/benefits for your personal lifestyle. Many people are happy with both types of valves and the lifestyle adjustments. OHS is zero fun and I feel for anyone going through it. We are so blessed to have such amazing health care and surgeons in the US so I just consider myself extremely lucky. If the worst thing we have to do is choose between a couple of heart valve options, we are the lucky ones. Many people around the world don't have access to this kind of care. Still others are suffering from illnesses that can never be "fixed" with a surgery. I remind myself of that regularly and feel very, very blessed and fortunate. <3 Cathy

Michele McMinn  Thank you so much!! I am going back and forth with this decision and I really needed to hear from you and your experience. I am a lot like you, I don't like taking medicine and to be honest most of the time I have a reaction to most medications, sometimes an odd reaction or medications are too strong for me. Today I'm leaning toward the bovine :) My surgeon said IF I choose the bovine valve he could place a ring in there to make it easier to replace the next time. This site has been a real blessing in connecting me with people like you who have been where I am going. We are truly blessed to have all that we have here in the US.
Thanks again I will be praying for you.
Michele

Cathleen Weed  πŸ’•πŸ’• I hope you come to a peaceful decision for yourself 🌈. Let me know if you have any questions. I'm happy to help πŸ’›πŸ˜Š.

Cathleen Weed  Thank you so much! I do hope I can be an inspiration to anyone who is facing this now or has faced it in the past. Upward and Onward :). I do have a book coming out in June. It's "Heart Healthy For LIfe", a healthy recipe and fitness guide <3. I'll be posting it when it's available on Amazon and Kindle. Thank you again for your very kind words! Happy to hear your surgery went well (especially after endocarditis!) :)

Cathleen Weed  I love all your acting analogies by the way (I'm a SAG member). I will take those awards any day lol :).

Cathleen Weed  Hi 🌞 Yes, so I did take my antiobiotics. It was a routine visit. However, I had a deep cut in my lower gums as well from a water sport accident and it coincided with my appt. The infectious disease doctors who first treated me were unable to ever say for sure what happened. Endocarditis is caused by a specific bacteria that is always present in your mouth (as well as skin, respiratory system, bladder, intestines..but apparently the mouth is the biggest concern) and if it gets into your system it has direct access to your heart and will sit on the valve (any type). I'll never know exactly how I got it. They've changed antibiotic protocol since then too (this was 1994). I've been fine ever since and I go to the dentist regularly. The endocarditis treatment is crazy hard. When the infection first hit my heart I developed a fever that spiked to 104 for 3 days before I finally went to the ER (stubborn!) and was diagnosed. I was put on round the clock IV antibiotic treatment through a surgically implanted Hickman line in my chest for 7 or 8 weeks....8 full bags of antibiotics a day had to drip into that line straight down onto my heart valve. They saved my life but my valve was destroyed and I needed emergency OHS as soon as the infection was gone. Take your antibiotics. Use Listerine. Keep your mouth cut free. Just take precautions but don't worry too much. πŸ’œ

Enrique K  Thanks so much for your valuable insight. Yes I do use dental floss, Listerine and then Act Mouthwash on a daily. I keep my teeth exceptionally clean. I won't worry and will go to the dentist for a cleaning:)

Cathleen Weed  I'm super great about it too and the more you go to the dentist the better your oral care is in the long run anyway, so no worries! :)

Cathleen Weed  You and I sound like we have similar stories when it comes to our heart valve choice. I just couldn't see limiting myself in any way. The tissue valve feels much more like a "fix it and forget it"....until the next time...buy hey, that's next time! lol

Cathleen Weed  Hi Steven! I totally understand! Having been through both kinds of surgery I would take TAVR anyday!! Lol. I am only 44 and I had a TAVR last August. I was qualified at Cedars Sinai because of my 3 previous open heart (sternum) operations. That made me "high risk" enough to qualify for TAVR. I am certain you will do that next time. In fact, I bet by the time you'll need a new valve, several years from now, it will be totally routine. Also, the surgeons told me that they actually PREFER doing TAVR on a patient who already has a bovine valve in place because it makes the fit much better. It was a breeze compared to the open heart. I hope that puts your mind at ease!πŸ˜€β€

Steven A Husted  thank you so much it does put my mind at ease you are a blessing to our heart valve journal community thank you again heart sister

Cathleen Weed  Hi! My valve is made by Edwards Life Sciences and happens to be favored by my surgeon at Cedars Sinai. However, bovine and porcine valves are equally durable and great. They are even starting to use a special coating to keep the tissue valves from calcifying as quickly. Fingers crossed on that progress! My last replacement previous to my TAVR in 2015 was an AVR open heart with a bovine tissue valve in 2005, so choosing another bovine was best for me. I also had my entire ascending aorta replaced in 2005 with a dacron graft due to a 6cm aneurysm. I've had zero issues with it! Let me just say that TAVR is amazing!!!! I went home the next day. You have nothing to worry about with this new technology. A true answer to prayer πŸ˜€πŸ’›.

Ruth Valenzuela  Cathleen, your story is truly inspiring especially having the TAVR and going home the next day. I was wondering about the aneurysm they replaced with the Dacron graft. Do you know what the chances of another aneurysm forming and if so, would they have to do open heart again?

Enrique K  Cathleen, thank you so much for getting back to me so swiftly, Great to hear that both valves are very durable:) I'm a very active person so the decision of the valve was very simple for me. The best decision of my life.

Hey Ruth, how are you? Hope you are doing wonderful, I had an aneurysm replaced by a graft as well that lasts a lifetime. Did you have the same?

Ruth Valenzuela  Yeah Enrique. I had it replaced with a graft. I didn't know it last a lifetime! That is so good to hear... I'm doing really good and I see you are doing just as well. Seems like yesterday we were waiting for our surgeries and now we are up and running. Some days I forget I had the surgery but there are days my incision pulls or stretches when I get up and the reminder comes. lol I saw the picture of you and your surgeon and you really look healthy and happy.

Cathleen Weed  Hi Ruth! Yes the dacron graft lasts a lifetime. In fact, your body forms new tissue cells around it! When I have my routine echos they measure the size at the point of the attachment but there's never been a problem. I had that done 10 (almost 11) years ago πŸ˜€. In fact, it was a total non issue with the TAVR even. So no worries!! Happy healing thoughts on your progress! ❀

Ruth Valenzuela  Thank you Cathleen! I believe now I'll be eligible for the TAVR when I need my new aortic valve replacement which I'm hoping won't happen for at least a good 10-20 years!

Enrique K  Hi Cathleen, can you elaborate on the dental procedure you had which infected your valve requiring another surgery. Did you take antibiotics before going to the dentist?

Cathleen Weed  Hi Frank! As long as you've done the research and feel comfortable with the new valve I think it's a great idea. My most recent replacement was a TAVR with a bovine tissue valve. The procedure was amazing and I left the following day because I felt so good! What a difference from the three prior open heart surgeries. I too hope to have TAVR again next time (10 years away hopefully). The surgeons at Cedars Sinai were able to do the TAVR no problem with my prior bovine valve from 10 years ago, which had calcified and was stenotic. I haven't read up on the one you mentioned but I will look into it. I will say by the time anything gets to the patient trial phase in the US it is usually a well documented procedure with a high success rate. Even TAVR is in that phase. I was one of the younger patients to have it done and it was smooth sailing!

Cathleen Weed  To add to my last post...Will this OHS be through the sternum? I can give any advice you need! Just know it will hopefully be a one time deal because TAVR is only going to get better and better. By the time you need it, it will be perfected ❀.