Sandy's Guestbook

Best of luck to you gandy for Monday. May you and the surgeons be guided by God's grace.  strong and all will be much better after you get a new valve. Trust me, I had two valves replaced and one repaired 17 years ago and just last week had one of those repaired, this time by robotic surgery.. at age 88. Stay strong and God blessings on you.

Sandy, I was a lucky one! I have gone every year to my primary. He heard a "murmur" and told me to check it out. I was having rotator cuff surgery and I went after I was healed. They found the Bicuspid valve which was stenosing and the calcium build up. The other thing they found was an aortic aneurism. So I went to the Cleveland Clinic for a second opinion. So four years later I had the surgery to replace my valve and my aneurism. I had no symptoms leading up to the surgery. Just my cardiologist telling me that it was time. Since my aneurism was stable my surgery, though needed, was not an "emergency".  So, it wasn't until I actually was getting ready to have the surgery that I felt some minor "anxiety".  Everything went great! And I went back to practicing Dentistry six weeks later. So I had no symptoms before and no pain after. So you will do great!

Hi Sandy - I guess I was lucky and was asymptomatic prior to my surgery.  We had been closely monitoring my (congenital bicuspid aortic valve) condition for several years but because I was asymptomatic the thinking/statistics showed it was better to wait until there were symptoms.  In 2014 (I think) the standard of care changed to “don’t wait if the biophysics of the valve meet certain parameters, so I became eligible.  I had my first grandson due in December of 2014, so I elected to have the surgery in June of that year. I had the “old style” full chest open/heart lung machine experience.  If you are having a TAVI procedure, your experience will be very different and you will be good as new in a few weeks instead of the six months I needed. 


I’m a Christian so I put the surgery and recovery all in God’s hands, and happy to say it has worked out well for me.  It’s scary, but there really isn’t anything you can do to influence the outcome than maintain a positive (“this is going to go fine”) attitude, be a good patient, and depending on your surgery being mentally prepared to tough out the recovery.  Hopefully you have a supportive partner and social circle.  There will be tough days ahead most likely, but thousands of people no different than you have made it through them. 



Wishing you the very best of luck and I will say a prayer for you.  

HI Sandy 
I was diagnosed with very severe aortic stenosis in 2008, a long story of repeated visits to the GP’s before it was picked up by a locum. 
My symptoms included angina, especially when starting to walk or exercise, nausea and syncope. In my case I had instances of being quite light headed and the feeling I was looking on events from the outside. It would also stop me driving until the feeling had passed. No one ever told me not to drive! I was also very tired a lot of the time even when just walking. 
I have had two open heart surgeries  and my 2nd implant is an Inspiris resillia valve which is treated to reduce calcification and I hope it will go beyond the 10 years the 1st one managed, also when it reaches the end of its life it can be expanded to accept a TAVI.
Do get rehab, I missed out on the 2nd occasion due to Covid and it definitely took longer to recover.
It is only natural to have all sorts of emotions at the moment but be calm and take it easy. Look after yourself, the operation date will soon come round. Remember these operations are very successful.
Good luck 
Andrew

Hi Sandy, I had a bicusipid aortic valve that developed into severe stenosis. I was getting short of breath during physical activity such as climbing a hill. I had a new aortic valve and as well 2 vessels that CABGs. I am now 2.5 years on after my surgery and my follow-up appointments with my cardiologist show a 100% normal cardiac function.
It's a challenge, but the end result is worth going though.
I wish you a safe journey.

Hi Sandy, Like you, I had a bicuspid valve and an aneurysm.  Only found out at the age of 68 because of a heart murmur that had not been heard before then.  I didn't have major symptoms, just slightly short of breath when walking up an incline or while carrying something heavier.  However, the echo showed my valve was getting worse and affecting my heart.  My surgery for valve replacement and aneurysm repair was 6 months ago and I feel really great.  No shortness of breath like before.  My "worst" memories from the whole procedure were the awful hospital food and not being able to sleep on my back when I came home.  Fortunately at my 2 week followup appointment I was given permission to sleep on my side as long as it didn't hurt.  I was very concerned about the recovery process as it related to pain, but very little pain, narcotics for two days and came home on just Tylenol.  My major recommendation is do cardiac rehab! I wish you well.

Sandy,
Was a symptomatic until I had my echo about six months prior to my TAVR on Feb. 5, 2024. Prior to TAVR, I began to have some breathlessness while walking which seemed to get worse as time went on however, I kept up my 2 mile walk several days a week, along with my 40 minute swim on off days.  I felt totally fatigued most days.  I am 86 years old and don't know what my life span will be. However, I just want you to know, having the TAVR was the best thing for me, as I knew the consequences if I didn't  have TAVR
done.  I know you are apprehensive which is natural but in a few months after your procedure you will feel like your old self again.

Hi Sandy.  I didn't have symptoms before my surgery.  In fact, at 60 years old i took a very rigorous canoe trip (i.e. carrying canoe over a mile long portage up and down steep cliffs) and I was amazed I could still do it!  I went in for a stress test because sometimes I'd get a little pain in my cheek when I start exercising.  And, I am overweight.  They found the bicuspid valve and aorta issue.  That was ten years ago.  

Recently a good friend went through the same surgery--and she is extremely fit.  She, like me, had anxiety about the surgery.  I was able to help her in advance.  The main thing I want to say is everyone I've known who had this or bypass surgery didn't have severe pain afterward.  That was my biggest fear. It's more like feeling very run down as your heart needs to heal physically. I only took one oxycontin--and that was to sleep in the hospital because they will check on you all night long.  Yes, there are people who have terrible pain, but I haven't talked to one.  I would think you'll feel okay.


If you read Adam's book, you will see how this is a terribly successful surgery (99% Success, I think) and very, very common.  Get one of the doc's that has done a thousand of these surgeries.  It will take a good month to feel more normal again.  Be sure to do the cardio rehab.  That is where I got the most support--from other patients--also dealing with the newness of all of it.  Helps to regain your confidence in your body too.



Your anxiety is warranted, but read Adam's book and keep positive.  You are being given a new lease on life.  At some point you'll feel a lot of gratitude I think.  Good luck!

Hi Sandy
I received a Carpentier-Edwards PERIMOUNT Magna Ease pericardial bioprosthesis in Feb '20, followed by 12 weeks sick leave and recuperation, during which the world went into Covid lockdown and remote working became commonplace. My life adjusted accordingly.
5 years prior to this I had been diagnosed with aortic stenosis following a routine medical. I continued regular gym and cycle workouts till July '19 when I went into atrial fibrilation, and for the remaining pre-op period I stopped exercising and became more breathless.
i am now retired aged 73 and exercising regularly again with 2 cycle sessions per week, light weights, pilates. Daily Bisoprolol and Rivaraxaban doses; occasional dizziness but all under control.  Seeing my cardiologist in July for periodic check up.
If I need another valve, I reckon on minimal invasive valve-in-valve procedure.
Good luck; try to relax; put your faith in your surgeon and team. Recovery for me was a gloriously painful blessing where I discovered the variety of You Tube


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I had aortic valve replaced 6 years ago.  Had no symptoms whatsoever.  Doctor noticed a murmur on an annual checkup which confirmed as aortic stenosis from an echocardiogram.  I was amazed at quickly I recovered after surgery and virtually no pain. 
Good luck.  You’ll do fine

Hi Sandy I’m Anne from London UK, I am 3 weeks post Aortic Valve replacement due to acute stenosis and Atrial flutter.
I Am a new woman, my symptoms were acute breathlessness and inability to walk more than 20 metres! I am making a great recovery walking every day good diet and plenty fluids listen to your body I have my life back and am so blessed good luck with your operation. X

I am trying to find out how long before anyone needed to have surgery from the time you were diagnosed to the time you had to have surgery was it month, or one to two years. 

Hi, Sandy, I had the same diagnosis. My OHS was about 12 weeks ago, and I’m doing really well. Let me know if you have any questions I can answer about the experience.

Hey members looking for anyone out there that has aortic stenosis bicuspid value disease and has had surgery would love to speak to you about your experience.