Guestbook of Willie Radl

My Guestbook

On April 9, 2020...

Christine Gallagher Ruskin posted a note for Willie that says:

Hi Willie

Happy to read your story! I had bicuspid aortic valve surgery on Dec 4, 2019. I have been feeling great too and it was great to hear all your successes! I also chose the OnX valve and I had my surgery at Duke. Thank you for sharing your story. Right now I’m on 3 mg of warfarin and staying right around a 2. I was happy to hear that you have a tool to check your own INR and an app too! I am hopeful I can stop all these doctors appts I have been going to have it checked ♥️

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On April 9, 2020...

Herman Kanter posted a note for Willie that says:

Greetings Willie from Kansas, You are looking GREAT!. Last Summer, at age 55 I went to the Mayo Clinic in MN to have my aortic valve replaced with the ON-X mechanical valve. I wasn't born with a bicuspid valve, just a regular valve that developed into a severely leaky valve. Mayos/St. Marys has wonderful people. My surgeons, Dr. Arghami and Dr. Puig were terrific - friendly, professional, and I knew I was in good hands. Dr. Arghami was born in the same month/year we were at Mayos in 1979 for my mom's valve replacement surgery. Take care and thank you for your update.

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On February 9, 2019...

Rich Krakowski posted a note for Willie that says:

Thank you for the notes and article. I appreciate it. Thats why 7 years seemed like an odd estimate. My regurg is 1-2+. LV functioning well.

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Willie Radl Hey Rich, no problem, sounds like you are sitting good for a while!

On November 5, 2018...

Adrianne Lane posted a note for Willie that says:

I hope I will be able to text you I have a Bicuspid aortic Stenosis as well I will be getting the on - x as well .

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On September 4, 2018...

Rob Sparling posted a note for Willie that says:

Th aks for commenting in my journal. I am not sure if/how people can track the replies if not in your own journal, so just wanted to thank you here.

I am having AVR in Cleveland and appreciated how much detail you provided. Very reassuring and positive! Inspiring.

Keep pushing, man!

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On July 26, 2018...

Barbara Blackwell posted a note for Willie that says:

Hi Willie. Just wanted to say Thank You for your reply to my inquiry re: sound of the valve after surgery. Glad to hear you are doing so well, and, that after 4 months you barely notice it. I know what you mean about it almost being "comforting"......kind of like having a good "mate" (as they would say here in England!) with you all the time. Wishing you continued success & recovery.

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On July 21, 2018...

Chris Purvis posted a note for Willie that says:

Hey Willie-great news on your 90 day check up! That’s great news my man even with that effusion sounds like some meds will take care of the fluid.

To answer your question-no pec incision at all. That 2 inches under my arm pit was it. Dr. Lamelas replaced my aortic valve and my Ascending aorta aneurysm up to the hemi-arch in that incision.

Chest tube was the only real pain I had and once that came out Day 3 I was under a 3 from that point forward.

I was walking 4 miles at week 2 and walking 5 miles by week 3.

Glad your doing well man!

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Willie Radl Awesome, I never heard of such a small incision without going through the chest. That's great you didn't have to deal with the sternum healing, that was the ... Read more

Willie Radl Awesome, I never heard of such a small incision without going through the chest. That's great you didn't have to deal with the sternum healing, that was the worst part of the whole experience for me. Glad to hear you are doing well and getting lots of miles in.

Chris Purvis Yea man I’m logging the miles in but walking is only so much fun. I’m ready for pull-ups and push-ups..
Easter Sunday I did 700 push-ups and 700 squats ... Read more

Chris Purvis Yea man I’m logging the miles in but walking is only so much fun. I’m ready for pull-ups and push-ups..
Easter Sunday I did 700 push-ups and 700 squats in 60 minutes..that’s the speed I’m used too.
I see your lifting already which is good!

On April 23, 2018...

Al Smith posted a note for Willie that says:

How did you ended up selecting Cicek, M. Sertac M.D. as your surgeon? There are several surgeons at Mayo Clinic Rochester; Dearani, Pochettino, Greason, etc.

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Willie Radl I first met with Dr Greason who seemed great as well but he did not offer the mini-sternotomy which was something I wanted so I called back to the cardiovascular ... Read more

Willie Radl I first met with Dr Greason who seemed great as well but he did not offer the mini-sternotomy which was something I wanted so I called back to the cardiovascular appointment desk at Mayo and asked for someone who had experience with the mini-sternotomy. The lady I spoke with said Schaff, Pochettino, and Cicek offered that. This lead me to Dr. Cicek who in my opinion was exceptional. He offered me all of the options possible, mechanical with mini (with caveat everything looked good after CT scans), Ross Procedure, repair, etc. but ultimately recommended the mechanical valve due to my age.
I think all the Drs at Mayo are probably great but if there is something specific you are after make sure to talk with the appointment desk to make sure you are getting the right surgeon for your needs/wants.

I'm almost 3 weeks out of surgery now and I feel great, my sternum is still healing but I think the mini-sternotomy significantly expedited the healing process. You can see some pics of the post surgical connections and scar in my photos section.

Let me know if you have any other questions.

On April 18, 2018...

Gina Fiorentino posted a note for Willie that says:

Great update Willie!

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On April 13, 2018...

Felix Cherny posted a note for Willie that says:

Hi, how are you doing? How is your recovery going? Are you following some physiotherapy plan or you are pretty much on your own? How are you getting used to the ticking?

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Willie Radl Felix,
I'm doing great, all things considered. Sleeping has been tough but its getting better each night. I have been slowly getting off the pain medications ... Read more

Willie Radl Felix,
I'm doing great, all things considered. Sleeping has been tough but its getting better each night. I have been slowly getting off the pain medications and am only using Tylenol for the last 3 days. I will be starting a cardiac rehab program next week at a nearby hospital, in the meantime I have just been doing short walks, I definitely don't have much cardio strength yet. I walked for maybe 4-5 blocks yesterday and was pretty tired. I definitely can still hear the loud ticking but I am getting better at ignoring it. I can hear it just about 24/7 (watching tv, walking, even listening to music) but I feel like there are periods of time when starting to forget about it. I hope it will start to diminish in the coming months. From all that I have read it seems like our brains should eventually adjust and we should be able to tune it out. I'm very skeptical about this as its very profound at this point so I'm just hoping for a reduction in volume. Have you been able to get any sleep or have you had any improvement in the ticking noise yet?

Felix Cherny Willie! On one side I walked 5mi yesterday 3 weeks after OHS. It was sunny an 75C. Today it rained and I stayed inside. I did short trips in the park in between ... Read more

Felix Cherny Willie! On one side I walked 5mi yesterday 3 weeks after OHS. It was sunny an 75C. Today it rained and I stayed inside. I did short trips in the park in between the benches where I’d sit for 10min between the 0.5mi trips. On the other side, the freaking ticking is still there and bothers the hell out of me. Remember, I have 2 valves replaced, not just one. I do agree with you that our brains must begin to tune the noise out, but it’s not happening yet. My stubbornness just rejects “the deal”. I’ve been a “fighter” all my life. My natural desire is to fight this noise off, but I realize it’s a fruitless excercise. So, it’s a mental thing. I must admit, it’s the toughest issue I have dealt in my life, as I can’t escape it no matter what

Felix Cherny I know it’s a bit late to ask, but I just want reconfirmation for my own sake. My docs flat out refused a tissue valve option for me. I’m 42. Have you ... Read more

Felix Cherny I know it’s a bit late to ask, but I just want reconfirmation for my own sake. My docs flat out refused a tissue valve option for me. I’m 42. Have you discussed this option with your docs? What reasons did they give your for a mechanical vs a tissue valve? Thanks man! Wish you a speedy recovery, I know how tough it is!

Willie Radl They offered me a tissue valve but basically said I'd be right back in same situation needing replacement in 7 years. They said tissue valves wear out faster ... Read more

Willie Radl They offered me a tissue valve but basically said I'd be right back in same situation needing replacement in 7 years. They said tissue valves wear out faster in younger patients, and being 32 they told me it would wear out quickly. If I went the tissue route I'd need multiple surgeries and that did not sound appealing to me. Going through this once is more than enough. I also asked about repair and Ross procedures, they offered both of these but suggested against them due to long term durability issues. I ultimately chose the mechanical for long term durability. I think if you were willing to go through multiple surgeries and maybe hope for TAVR down the road that could be an option to get rid of the tick.
Best of luck to you, I know the tick sucks and I hope you can come to embrace it. I'd hate to see you have to go through another surgery to get rid of the ticking.

Felix Cherny Willie! I hear you, man! I just can’t understand - we sent a man to the Moon 50 years ago, soon we will go to Mars, but they can’t make noiseless mechachical ... Read more

Felix Cherny Willie! I hear you, man! I just can’t understand - we sent a man to the Moon 50 years ago, soon we will go to Mars, but they can’t make noiseless mechachical valves for us. I know I hate the ticking, but I have seen some posts here from the guys in their 40’s who chose the tissue valve for “quality of life” reasons. I can’t blame them, it’s their lives, but, each time they put you to sleep, open you up (minimally invasive or not), every time they touch your heart - it’s big trauma to your body! I’ve read long time ago, than an OHS is equivalent to the heart attach in terms of the stress to the body, and each time they put you to sleep has irreversible consequences to your brain, which might pot up 10-15 years down the road. Tough choices

Willie Radl I agree these valves seem very basic for today's technology. I'm sure its only a matter of time until someone develops a durable valve that doesn't need warfarin ... Read more

Willie Radl I agree these valves seem very basic for today's technology. I'm sure its only a matter of time until someone develops a durable valve that doesn't need warfarin and doesn't tick. Unfortunately for us it isn't here yet.

On April 3, 2018...

Susan posted a note for Willie that says:

Willie- Good luck and positive thoughts coming your way! You can do this! We'll be looking forward to your updates and welcoming you to the recovery club!

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Willie Radl Thanks!

Charlotte Dowd Good luck Willie- will be sending thoughts and prayers out to you tomorrow!

Susan Killian Sending out prayers for your surgery tomorrow, and for your recovery after that! Keep us posted!

On March 30, 2018...

JoAnn Lenhart posted a note for Willie that says:

Best of luck on your surgery

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Willie Radl Thanks JoAnn!!

On December 27, 2017...

Enrique K posted a note for Willie that says:

Hi Willie, I had minimal AVR and ARR in 2015 through the right side of the chest with no sternum open or ribs cut. Please keep in mind that not every patient is a candidate for this procedure. The surgeon has to be highly skilled to perform the procedure and make sure he is an expert in minimal invasive surgery. My choice of valve was a freestyle aortic root valve (porcine valve) and I don’t regret my decision. Please read my journal it has valuable information on what realistically you can expect before and after surgery. Good luck with your decision!

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Willie Radl Enrique, thank you for sharing the details of your experience. I often wonder what the post surgery experience will be like, your journal is very helpful. ... Read more

Willie Radl Enrique, thank you for sharing the details of your experience. I often wonder what the post surgery experience will be like, your journal is very helpful. I'm curious what the "feeling" is like 2-3 days after. Is it hard to walk due lack of breath (heart/lung power)? or is it just too painful from the incision (chest)? I work a desk job and told my employer it could be 1 month before I return. My work is very flexible and I could work from home, based on your experience with minimally invasive, how long do you recommend being off work? In my mind it seems like as long as I can think and move my arms/fingers I should be able to work from home. I can't imagine not being able to work on a computer for 1-2 months!

Enrique K Hi Willie, no it was not hard to walk but the tubes are a bit uncomfortable not painful. I didn’t have any discomfort on my chest when I walked. You should ... Read more

Enrique K Hi Willie, no it was not hard to walk but the tubes are a bit uncomfortable not painful. I didn’t have any discomfort on my chest when I walked. You should be able to go back to work in 4 weeks. The hard work begins when you get home. Good luck with everything. If you need further input i’m happy to help.

On December 22, 2017...

Anon posted a note for Willie that says:

Willie,

I was in a similar situation to yours: 30s, BAV, active lifestyle with no symptoms and no stenosis. I had my surgery in October -- a valve repair at Cleveland Clinic with Dr. Lars Svennson. He was amazing and the recovery has been so much better than expected. So keep your hopes high.

I am very surprised your surgeon said a repair would have you back in surgery in 5-7 years, as that's not what Cleveland Clinic's data is showing (their repairs last MUCH longer). I'm also surprised that your surgeon said he has to perform the full sternotomy. At Cleveland, the minimally invasive seems to be standard for routine surgeries, with great success.

Check out Dr. Svennson's video here: https://www.youtube.com/watch?v=zowjyj1Y4sQ

If you are a candidate for a repair (not everyone is), I think it's far preferable to either of the replacement choices. At least that's the choice I made.

Perhaps you want to go for a second opinion at Cleveland. They can even do it remotely if you send them your tests -- check the website here: https://www.eclevelandclinic.org/onlineSecondOpinionProductHome

I visited three major heart centers and decided on Cleveland once I got a second opinion there. I don't live in or near Cleveland, but it was well worth it.

Best of luck,

--A recent BAV repair patient (I prefer not to post my personal details)

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Willie Radl Anon, Thanks for the response. I will definitely look into the second opinion at Cleveland Clinic. I was hoping for repair and that would be great if they can ... Read more

Willie Radl Anon, Thanks for the response. I will definitely look into the second opinion at Cleveland Clinic. I was hoping for repair and that would be great if they can make that happen. Maybe there is something with my situation that makes it not repairable but based on all the metrics they showed me the only issue was my severe regurgitation and very slight dialation of the LV. The surgeon I talked to at Mayo didn't seem interested in considering repair but hearing your experience makes it sound like Dr. Svennson or others at Cleveland Clinic may be more willing to give it a shot. Do you know if the repair completely corrected the regurgitation?

Was your surgery the Mini-Sternotomy or did you have the incision on the right peck?

Out of curiosity, did you drive or fly to Cleveland and how difficult was the trip home?

On December 22, 2017...

You should read Cathleen DeWitt's story. I am 60 and had a TAVR In October of this year. The surgeon and cardiologists believe the valve, which is a Edwards Sapien 3, will last as long as a SAVR valve. I was home in 36 hours and walking 4 miles in 3 weeks. Just had to wait until my leg healed. They assured me they could do a valve in Valve when I next needed. Just something to think about. I was lucky to qualify for Tavr. Hopefully in the future everyone will.

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Willie Radl Wow Cathleen has quite the experience. I am amazed at the capability of modern surgery. Stories like that make me feel lucky for making it to 32 with no issues. ... Read more

Willie Radl Wow Cathleen has quite the experience. I am amazed at the capability of modern surgery. Stories like that make me feel lucky for making it to 32 with no issues.
The TAVR does seem like the way to go now days. I actually saw a video online of my surgeon Dr. Kevin Greason from Mayo Clinic saying that he thought future valve in valve procedures will have better outcomes with TAVR in TAVR valves compared to TAVR in the traditional bioprosethis....... if yours ever does wear out I hope he is right. It definitely sounds like you made the right decision.