Phil's Guestbook

Phil Wutz  Hi John -

Here's a very technical article:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4485610/

From which I pulled the following quote: "The prevalence of BAV stands nearly 10-fold higher in primary relatives of patients with BAV than in the general population"

Here's another article that may be a little easier to understand:

http://www.onlinejacc.org/content/44/1/138

There is an undisputed genetic component to BAV and there can be other, more serious complications, like associated thoracic aorta aneurysm (TAA) which shouldn't be ignored.

Tell your relatives that you'd much rather they found the problem (or lack there of) with a simple echo than during their autopsy! It may sound a little harsh, but if your relatives are anything like mine, they need to be struck between the eyes with a hammer just to get their attention!

Willie Radl  Good article and shows the need to get checked. I have BAV and know my brother and one uncle has it as well. I have known about it for a long time but none of my other family members were checked, my brother found out during another unrelated surgery when they did an echo due to having blood pressure discrepancies between his arm and legs. My mom is getting an echo in Jan., I'm hoping she doesn't have it.

Phil Wutz  It does take time to schedule the echo and get the results but the benefits are huge. If they don't have BAV, they can have peace of mind. If they do, it's time to set up monitoring with a cardiologist.

My daughters were under the impression that they needed to get signed up with a cardiologist just to get the initial echo, which is wrong. Your PCP/GP can order up the echo based on family history and also review the initial results. If it turns out they DO have BAV, the they can seek out a cardiologist for the monitoring.

Phil Wutz  Thanks Bonnie - I'm home from the hospital as of last night. The mini-sternotomy and bovine-tissue valve replacement (27mm) went well with one minor wrinkle - I went into AFib the morning after the procedure. Started at 3am and lasted until almost 10am. I felt every second of that 7 hours. I can't imagine living with that condition! I never felt that uncomfortable in my life. About 40% or so develop AFib after AVR. I guess I was just one of the lucky ones. Dr. Shemin's first visit to my bedside was during my AFib and I was less that gracious, which I'm eternally sorry for. After all, the guy just saved my life less than 24 hours before that!

The pros at UCLA Medical were able to get me back since this isn't their first rodeo by any means.

Thanks to Dr. Shemin and all the wonderful nurses and caregivers at Ronald Regan UCLA Hospital for saving my life. God was definitely guiding me when he moved me from Buffalo, NY to LA more than 10 years ago. Dr. Shemin told my wife that he was surprised by how tight my valve was ("down to a pencil point opening"). It just reinforces that a stenotic AV gets worse in a big hurry. With all the planning it takes with insurance, work, surgery, etc., one does not have time to waste once the process begins.

I'm back in the loving arms of my wife Darlene who will bring me back to full health. You also need to be a "motivated" patient. Exercise, taking the meds at the right times, deep breathing/coughing, no lifting or driving, proper diet, etc.

Since I came home I haven't needed any pain meds at all and am avoiding the "oxy" at all costs. It will take another night or so kick it completely. Don't get me wrong - for right after surgery and the next 3-4 days I absolutely needed it. Recovery from the grueling open-heart surgery is best done with with this stuff but getting dependent on it is like falling off a log.

Anyway - on to recovery. Many thanks to all that held me in prayer - it made all the difference. By God’s glorious will, I'm alive. Many thanks also to Adam for this wonderful site and valve replacement community. It helped me in so many ways, not the least of which was finding the incredible Dr. Shemin!

Bonnie Stone-Hope  Nice to hear from you and to know that you are now starting your recovery. The tough part is over, you did it!
Good for you.

Fully expecting A-fib. after surgery but watched a video on this site that said 94% of patients who experience A Fib after heart valve surgery recover within 6 weeks, stressing that this is temporary.
I can do "temporary"

Phil Wutz  They'll put you on a regime of meds (Amiodarone, twice a day) for at least a week to help keep the heart from slipping into AFib again. Also, they'll put you on Metoprolol beta blocker daily forever. I was told that the chance of recurrence drops the farther away from the surgery day. The first week is the steepest.

I'll hold you in my prayers for a successful surgery. Anything this major is scary but if you're like me, I definitely wanted the old diseased valve out. Santa will bring you a fully-functioning heart for Christmas!! Its the best gift one could get.

Bonnie Stone-Hope  Thanks, Phil. Appreciate your words of wisdom.
Life is so funny really. I was supposed to be advising you but surgery got cancelled so you are advising me.

Happy Holidays

Phil Wutz  Thanks Gib. I hope my outcome is as good as yours. At this point, I just want the old non-functioning valve out and the new one in!

Susan McNally  I've been referred to TA R surgeons I think or at least minimally invasive specialists. However I am only 59 and I'm wondering why bcos I thought they were only for high risk patients.?

Russ Breidinger  Hi Susan, Open heart surgery has a long track record that is very good, but recovery time and pain is excessive. There is a limited data on the TAVR procedure because the patients were high risk and usually ended up dying of causes other than the aortic replacement. As of this summer, they have begun letting certain hospitals start trials on the TAVR procedure. So far the TAVR appears to be as effective as the open heart procedure. I plan on giving them data for many years. As far as I am concerned, the TAVR procedure is the only way to go. See where I have updated my story.

Phil Wutz  The Edwards LifeSciences Magna Ease Plus is supposed to be good for about 20 years but that is highly variable. When I'm ready for the next one, they'll be able to do a TAVR, however, for all I know, in 20 years maybe we can grow our own spare parts from stem cells.

Phil Wutz  Thanks Teri. I see Dr. Shemin tomorrow to discuss my upcoming surgery. He uses a bovine tissue valve from Edwards Lifesciences. I'll post information as I get it. I wish you fast healing.

May God's grace carry you through your needed healing and restore your body and ease your suffering into a new season filled with hope and joy.