Joseph's Journal

Delise Becker  Sorry to hear this news, but that's why they do all the pre-op testing. It's a good thing your PE was caught and is being treated. Praying that by December, you'll be able to get back on the surgical schedule. Please keep us posted. 

Joseph Chavez  Just some additional info.... I was born with bicuspid aortic valve so I always knew this surgery would be a part of my life I just expected to be 60 or older.... I feel ok overall my stress test was normal it's my echo that shows moderate to severe regurgitation.

Joseph Chavez  Last thing I get these ,"yawn attacks" where I can be just sitting in the car or at home and I yawn repeatedly and it feels like I'm trying to catch my breath with each yawn.... Has anyone else had this?
Any thoughts?

Marie Myers  Yes, Joseph, i have experienced that feeling of not getting a deep enough breath for many, many years. I would find myself yawning sometimes until I “felt” like I got enough air. I brought this up to my PCP a couple times, who did not really have any answers other than general anxiety. And that may certainly be right. While I have always been an anxious type of person, (raised by anxious parents ) I did my own research and found something called Chronic Hperventilation syndrome. I feel I may have a very subtle form of this. (No overt panic attacks or feeling that I can’t  breath/no runs to the ER ) . I have learned that through yoga, meditation and “Buteyko Breathing “ techniques, I am managing my anxiety better. I find ‘box breathing” and “4-7-8 breathing helps also. If you Google any of these terms, you may find some help in managing it. Different articles suggest CHS run the gamut from mild to severe, and that it might be an unrecognized diagnosis for many people. Needless to say, being told you need open heart surgery really ups the anxiety! I too was born with a bicuspid valve. I learned about my valve in my 20’s, and was very active my whole life. (activity dissipates energy and anxiety for me :-). And yes, I am back to playing tennis and pickleball…
So, when i started having echocardiograms in my 40’s, everything was fine until age 63, when I was diagnosed with an ascending aneurysm and root aneurysm. You can read my story by clicking on my name if you like. Your need for surgery is most likely determined by the sound of your murmur and the results of your echocardiogram. Your cardiologist will be the one to advise you on when surgery is necessary. You don’t want any permanent damage to occur … Sorry for the long response! If you have any other questions, feel free to ask. Lots of people on here who have been through this! You will get through it also, when it is time. Hope this helps

Rose Madura  Joseph, we tend to think the symptoms are normal aging and don't want to believe we need surgery.  You don't want to wait too long.  I had similar surgery six years ago and feel so much better now.  You can do this!  

Grace Mason   I would get more than one opinion. I was told surgery necessary by some, and some said wait. (Surgery was recommended originally to me 2yrs ago). My aneurysm is what is driving my surgery now. I have moderate regurg of aortic valve. If not for aneurysm I would be waiting. 

Rita Savelis  Some people never have symptoms, but their echos show that they need surgery. Some people have symptoms but their echos look okay. It's a fine line to decide when surgery should take place. There are different schools of thought. I was in no hurry to have surgery and was followed for 6 years. But I eventually did get symptoms (shortness of breath). Then I had all the pre-tests for surgery that I needed and my surgeon told me to make the call when I was ready. As far as resuming your former lifestyle after surgery, you will. But you may need some recovery time and you may be impatient.  I recommend being kind to your body and allowing it to take the time it needs to recover. And then get back on your bike. Take care.

Klara Čičić  I, too, had few symptoms, but decided to go for surgery cause of my echo results and occasional atrial fibrillation. I also knew things won't get better. Heart started remodeling already. I went for three cardiologist opinions, 2 were for intervention, 1 was for the waiting option. Putting all risks and fears of surgery, I wanted to stop my heart from overworking my whole life. Now, after surgery, my previously enlarged heart chambers are back to normal. Marie, that is so interesting and educational for me, thank you for sharing your story!! 

Angela Meletiadis  I got several opinions. They all were the same. Had mitral valve repair last year, back to activities and work (PE teacher) by March 2023. Off most meds, too, just taking baby dose of asprin. I'm 63. It's not an easy decision, but I relied on the several opinions while keeping in close communication with my home cardiologist in Greece. I wish you the best as you make your decision. 

Richard Munson  Those symptoms you describe and make no bones about it, those are symptoms,  are the very symptoms i wanted to avoid which is why i asked for the surgery. From a laymans point of view, i think of the heart like any other piece of machinery. If you fix it before it shows signs of collapse, it has a better chance of being repaired.

Meredith Bray  Wait til you wake up from surgery and see how good you feel. You won't realize how symptomatic you are until you aren't. I don't remember much of my recovery (thank you anesthesia after-effects) but I do remember the instant I opened my eyes and how much better I felt. Younger. Healthier. 

-Meredith

Susan Lynn  Welcome, Joseph! You've come to the right place! Lots of aortic valve heart warriors here! If you have any questions, just ask! We were all frightened before surgery, but you'll find that you're going through the most difficult part of the process right now - waiting! The rest is very doable! You'll be just fine

Klara Čičić  Welcome Joseph to this wonderful, helpful and supportive community. Susan said it perfectly. We are here for you through this journey. You can do this!

Wendell Scott  I just went thru Aortic Valve surgery in early June.   Well on my way to recovery.   Walking nearly 1.5 hours/day and doing therapy 3x week.  Even have gotten back on my indoor cycle trainer and hope to return outside next year.  

Sleeping will be tough.   Patiently find what works for you.  I slept in a recliner for 5 weeks.   They will warn you about lifting restrictions.   Pay heed.   I made a few mistakes with this early on (nothing serious, but I learned quickly that is a big issue).   Move as early as you can and as often as you can.   The more you move, the earlier you'll get back to feeling like you're in control, which will mean a lot for your psyche.  Best of luck.   Hope this helps.

Pamela Gregory  Welcome Joseph! This is a great site to find information and ask just about anything to people that truly "get" how you are feeling and have gone through process- emotionally and physically

Rose Madura  Welcome Joseph. I had aortic valve replacement, ascending aorta and arch repair six years ago and am doing fine. Please asked any questions and I'll do my best to help you get through this. Very doable, the surgery. Godspeed.

Ted Niedziela  Hello Joseph. I had AVR-AA /OHS at Columbia Presbyterian in 2022 and you are going to the right place! It is an amazing heart center with amazing people. 

Meredith Bray  Hey Joseph, welcome to the community! I had a bicuspid aortic valve that I traded for a mechanical valve when I was 42 in 2014. My experience was not as scary or traumatic as I imagined it would be. And I'm sure you've heard this - the worst part was the waiting.
I hope you find what you're looking for here, and if you don't find it, just ask!


Glad you're here,
Meredith
Oak Ridge, TN

Brian Kennelly  Hi Joe, it's been 13 months since my bicuspid aortic valve was replaced with a mechanical one, now 60 years old, all good, cumindin situation not bad at all, any input needed, please ask, Brian