Odessia's Journal

Grace Mason   Sending prayers for you Odessia Tomorrow your team will be doing what they do every week, so try to relax and do whatever makes you feel good. Wishing you well

Odessia Wright  Hi! Update, I'm 1 week post surgical. Surgery went well thank God! Now I'm in recovery mode at home  and just take it easy day by day thank you for all your prayers ❤️

Sue Maize  So glad to hear, the worst is behind you! Thanks for the update Odessia! Continued good health! 🙏🏻

Andrea Babcock  Dear Odessia, continued well wishes during your recovery!!! Glad that you are home and the surgery went well. 

Daneen Douglas  Odessia, There are pros and cons to both. The mechanical valve generally never needs replaced but you need to take blood thinners for the rest of your life. That means you bruise easily, bleed a lot if there is an injury, and have to get your levels monitored weekly. There is also an audible click with each heart beat. My mom has two mechanical valves and has battled with regulating her blood levels. Many people do great with the mechanical valves, however.

The biological valves are getting better and can last up to 20 years and then you can have a non invasive TAVR through your artery that pops into the same place as the biologic valve, which stretches out of the way. And, you don't have to worry about blood thinners.

My surgeon says about half of the surgeons will recommend mechanical, and half will recommend biologic. It also has a lot to do with your lifestyle.

I'm getting the freestyle bio prosthetic valve/root that will accommodate a TAVR in the future. I'm a clumsy person, cut myself often in the kitchen, and bruise easily as it is. I also enjoy hiking and outdoor activities. So, for me, I felt this was the best option.

There are a lot of factors that play into the decision, ultimately.

I hope that helps a bit.

Odessia Wright  Your right the first option they tell you is they recommend a mechanical valve. To be honest that is truly not my first choice, and the blood thinner? No I'm to active to be on that.

Jennifer Fuller  Something to keep in mind - if the bio valve you receive is too small, you might not be able to have TAVR in the future. I have a 21 and I’m now resigning myself to the fact that I might have to have another OHS someday. But who knows what advances medical science might make between now and then? I certainly wish someone would develop a mechanical valve that doesn’t require the patient to take blood thinners.

Daneen Douglas  Jennifer, yes you have to have 23 or larger.  I’m sorry you did not receive a big enough valve.  Was your surgery prior to the introduction of the TAVR?  Science is always advancing so you never know what lies ahead.

Carolyn Stone  Just wanted to chime in for the TAVR. Having had both the SAVR (Edwards valve. A 23) and a TAVR (Sapian expanded to 27) 1 week ago I recommend the TAVR. Much shorter recovery that likely would have been even shorter had I not been in conjestive heart failure on the TAVR, not to mention nearly pain free. I remember with the SAVR if I sneezed or cough my sternum hurt so bad. I found one surgeon recommended the mechanical and 1 recommended the tissue TAVR. The surgeon recommending the mechanical said she would work me up for a TAVR once I told her I was going with the other surgeon. Honestly having to do this again 10 to 20 years down the line doesn't seem that big of a price to pay given how much harder it was last time. Good luck with your decision and maybe ask if you can even get a TAVR. Your aortic root geometry as well as the rest of your aorta could mean that TAVR isn't an option and you won't really know until you get the CT , angiogram, breathing test and neck echo of your arteries.

Daneen Douglas  Great information Carolyn.  You speak from personal experience.  It seems like it was a great experience to get the TAVR.

Odessia Wright  Thank you for the advice. My cardiologist said due to the shape of my bicuspid valve that I'm not a candidate for having the taver procedure.

Michael Klusyk  Hi Odessia. I wrote all about my options and the decision that was ultimately made during surgery in my journal. That may be a helpful read if you're interested. 

Cliff note version: Had OHS in June of 2022. Option 1 was ROSS Procedure and back up plan was Edwards Inspiris Resilia. I am super active so mechanical really wasn't that thrilling for a number of reasons. Ended up with the Edwards. I was hiking multiple miles a day within a few weeks and back to work as a full time career firefighter in 9 weeks. No blood thinners, no ticking, and option of TAVR if needed in the future. 

I hope you are getting the answers you need and are finding comfort in those of us that have gone through OHS and AVR. Please let me know if you have questions that I might be able to answer.

You're going to do great!

Sherri Waineo  I had bicuspid aortic valve and it became severely narrowed last year.  I had open heart surgery in August 2023 with an Edwards Inspiris Resilia replacement valve.  I did not want to be on blood thinners for the rest of my life.  In the future, if need be, I hope to have a TAVR done instead of open heart.  The Inspiris Resilia "stretches" to accomodate the TAVR valve.  So far good experience for me!  Hope you can make up your mind and be satisfied with your decision!

Susan Lynn  Odessia - We know exactly how you feel! The anxiety is very high in the weeks and days before surgery. But, waiting is the hardest part. Every part of the surgical process is very tolerable and your every need is taken care of. All you have to do is show up, trust your surgeon and team, and take a quick nap. It will feel like only a moment has passed and it'll all be over. You'll be in recovery getting better with each passing day. You can do it!

Andrea Babcock  Best wishes Odessia! I am the wife of Dean that is waiting for his open heart surgery date for aortic and mitral valve replacement and we are both terrified. I am also so very glad I found this website and reading every an all information I can get my hands on including white papers. Since I am advocating for my husband and trying to determine the very best heart valve available in the USA. It has been 2 months since we found out and we still have not been able to get many questions answered or even have the names of the 2 surgeons that will be doing Dean's surgery.  The waiting is the worst! I really feel for you and wanted to send you the very best wishes and a big hug. I will be following you along your journey. We are guessing that Dean's surgery will be early February.

Daneen Douglas  Odessia, Welcome! We have the exact same diagnosis, BAV/AS, with a few additional fun add ons, lol! I will be getting my aortic valve replacement plus a root and aortic aneurysm resection.

If you have AS, as we both do, you are usually not a candidate for a TAVR unless you are elderly, as far as I know. Your first one has to be open heart and if you get a tissue valve replacement, like I am having, you can get a TAVR way down the road. If you get a mechanical valve you won't need another replacement, most likely, but will need Coumadin/warfarin for the rest of your life as you probably know already.

Im 52 and my stenosis just went to severe as well in August. My surgery is in May. Are you getting a replacement, or a repair?

The stories from the many valve replacement warriors are very reassuring. I'm sure you will be feeling better after the surgery. I know I'm looking forward to that!

I wish you blessings for a successful surgery and quick recovery. Please feel free to reach out with any questions or concerns.

Daneen

Rose Madura  Best wishes Odessia!  Yes, it is scary.  I was thankful that I had an ablation and a hysterectomy as previous procedure/surgery because "going under" was the scary part for me.  I actually had peace before the surgery.  I had similar surgery over six years ago and feel great now.  I'm sure I'm much older than you so age will be an advantage. Do your research, get a second opinion to be sure, make a valve choice and then go with it. Blessings. 

Allen Carkner  Definitely a bit scary at first but open heart surgeries have great outcomes most of the time these days. Welcome to the community. Feel free to reach out with any questions. I had my critically stenotic BAV replaced by Ross procedure in March 2023 at 24 years old.

Greg Lewis  Hello Odessia! As Susan says, we all do know exactly how you feel. You are not alone in this. There are people taking your hand and walking you through each step. I would add that (and speaking from experience) even on the outside chance that there are complications, remember that your surgery team has seen it all, and they know exactly what to do. THEY need to know what to do, not you. You just gotta show up, take a little nap, wake up (then wake up again, and again, and again..) and before you know it... all better! Easy peasy. If you believe, then talk to Him..a lot. It helps..a lot.  If you don't believe, try talking to Him. He will always be there for you.  Best wishes!  

Odessia Wright  Thank you all soooo, sooooo much for reaching out with your responses to me and giving me encouragement through this journey!  Like I said before my mind is in a whirl wind right now and I am usually the one that encourages and support, but at this moment I don't think I have cried or had so many emotions over this upcoming journey ahead. 

Nancy Bukowski  Hello, I am new to this site and have been diagnosed with a bicuspid aortic valve, severe stenosis.  I am planning on surgery soon (spring 2024) and was disappointed to hear that TAVR is not an option.  Similar to everyone, I am having a lot of anxiety over this.  Trying to stay calm but the waiting is very difficult.  I am trying to gain a better understanding of mechanical vs. tissue valve.  If you go with a mechanical valve and are on blood thinners, what happens if you are no longer able to take blood thinners for some reason?  Is there something else that you can take in place of blood thinners to mitigate the risk of blood clots?  I am 61 years old and was only hoping to have to go through this one time!

Daneen Douglas  Hi Nancy! I'll be getting 3 things replaced with one surgery this spring as well; aortic root/valve, and ascending aortic aneurysm. You have to stay on blood thinners with a mechanical valve. To my understanding there is nothing else to take but the blood thinners. That's a great question for your cardiologist. I've heard stories from my surgeon that some people who went with the mechanical valve and are extreme outdoors people, have had no problems and are very happy with the choice. It is definitely a personal decision. The good thing is that the TAVR is a great option for a replacement down the road if you go with the tissue valve now, because it's so noninvasive. Good luck with your decision and I look forward to following each other's recovery this spring.

Nancy Bukowski  Hi Daneen, thank you for your response!  I appreciate you taking the time to answer questions when you have so much on your plate already.  I have an appt with a cardiac surgeon on 2/5 and will ask him that question and report back.  And, I also look forward to staying in touch as we progress through this.

Allen Carkner  For some people, Ross procedure can be a third option for aortic valve replacement on top of mechanical and tissue SAVR procedures. However, not all surgical centers perform this procedure.