Harry's Guestbook

Jeff Pheffer  Hey Harry. zLike that you are compiling data. very serious with your chart there but it will come to you ( what you want to do) as you get your own feeling of what will make you feel happy.  I am 71. had a bovine tissue valve with aorta repair in 2010 at UCL A ( shout out to my great surgeon Richard Sheman  who I found through this great site—double shout out to ADAM for creating and maintaining this terrific and in many cases lifesaving  site where I actually found out what was wrong with me and which helped me make a decision to get surgery). Back to my story…

so that’s over 15 years of heavy use.  And i get yearly tests with my cardio and the “ valve looks great” she says

how i discovered  my problem.  i had a therapist mention in passing i had a murmur.  that was in 2008. first time i heard that.   Had an echo the next year which was mild to moderate regurgitation.  still no drs are worried. But I did intense martial art practice with grappling and sparing and in spite of lifetime fitness i was running out of breath.  could not compete.  then i noticed a rapid heart rate not connected to anything. finally i noticed i couldn’t finish sentences without taking a breath.  SOB they call that. then after consulting cardiologists had another echo which was moderate to severe.  

now i assume you have made the decision to get your heart fixed but im sure there are a lot of people on the fence about it because drs aren’t pushing surgery ( for obvious reasons) unless it’s a life or death thing. basically if someone with aortic stenosis or regurg significantly alters their lifestyle, as in no more high activity, the heart should chug along and you won’t become a cardiac cripple.  What people need to understand is that, and please adam or anyone else correct me if I’m wrong, the danger is not so much that your heart has to work harder although that also can be somewhat helped by just keeping the heart rate low so it doesn’t have to beat as much to meet the oxygen demands of activity or exercise. But the leakage causes the chamber to OVERFILL every beat.  that STRETCHES the heart every time it beats.  And eventually it is so stretched that it doesn’t have the elasticity and strength to pump. That my friends is called CONGESTIVE HEART FAILURE. And the only cure for that is a NEW HEART. 

So after I discovered this, again only through Adam’s site. no dr had this discussion with me, I ask myself, and then my drs these questions:
1-will this condition get better. Always NO
2-will it get worse-yes
3- is there any way to fix it without surgery? NO

so then i decided surgery, i then looked at options. if i dont need to go on blood thinners  better choice.   i was and still am not afraid of a repeat chest cracking. techniques get better and medicare is great insurance. i looked at ross and Arnold had one and well i was concerned with the complications he had and not a lot of drs do them and nobody was recomending them. i guess it for those who want something different. no guarantee with that upside wise and lots of potential downsides with the procedure. Tissue was the right decision for me and currently i am on ZERO heart meds. I take a baby aspirin plus some statins ( crestor and zetia) and recently jardiance and more recently trulicity. both diabetes oriented but also great for heart health.  my weight is 175.  best in decades. I stopped running after surgery. it just didn’t feel good. but i do high intensity road bike rides and outrigger canoe and snowboarding and yoga. plus golf. not all at the same yime but all with a simile. 

Dan Fouratt  Harry, I was a little older (63) when I got the news. Depending who I
talked to I had moderate/severe or simply severe.  One man OI total
trusted said I could go up to two years before it became necessary. I
chose not to wait but that was my personal decision.  Make the decision you are comfortable with. 

Harry Neumann  Thanks Nigel.
A bit surprised that you can hear it but if that is the way it it then so be it. I would imagine that you cannot hear it if you are wearing layers like in the winter. But can others hear if they are sitting beside you?

I am researching all options and what options may be available like the ross procedure.

I am just starting my journey so I could only imagine what is going to happen with my mental well-being. 

Keep positive my brother

Harry Neumann  Thanks Ken
I am doing the research on this Ross Procedure. There are 4 surgeons that do that procedure in my City. With the Ross you still go on the heart lung bypass and it is as far as i understand an open chest surgery but the outcomes are better.

You would be at home by now so how are you doing?

Ken Fulton  I'm much better than day one at home. I was asymptomatic before surgery, and any shortness of breath or decreased run times I chalked up to age. I was exercising up to the day of surgery. Post-surgery was a shocker. The fluids they pumped into me during surgery resulted in a 25-pound weight gain for me. Walking was initially a struggle in the hospital. Now three weeks removed, I'm covering a mile in a bit under 18 minutes and feeling significantly better. Based on conversations I've had with friends who have been through this, I'd say my recovery has been fairly typical. Every day has been better than the last. Best of luck in your journey!

Aaron Bader  Hi Harry - a Ross Procedure patient here too... I'm 5 weeks since my Procedure.  Very similar pre-op situation as Ken - bicuspid, significant regurgitation, left ventricle dilation.  And was told the same initially - mechanical and all that came with it.  SO glad I got a second opinion - that's where I learned of the Ross procedure and glad I did.

My recovery has been nothing short of a blessing... I came home and have not once taken any pain medication.  I'm moving and walking all the time... 13K steps today and counting!  

The most amazing part is not hearing and feeling the "ker-chunk" of skipped and missed beats anymore.  It's the best crazy feeling ever.  And like Ken said, no blood thinners.

My sternum, still a little tender, still some limitations, still some times when it tells me, "not that, not yet," but even there so much better than when I first came home.

I'm 47, which I'm pretty sure put me on the younger side of Ross candidates.  I think you'd absolutely be a candidate and encourage you to continue looking into it.

John Cook  I’m 20-weeks post-Ross and I graduate from cardiac rehab today.  I was running 5ks in the week before my surgery. I’ve worked myself back up to 6 minute interval jogs with 2 minutes of walking between.

For everything but exercise, I’ve felt ‘back to normal’ for 10 weeks. For exercise, I’m probably 75% of where I was.  I still
have a lot of speed and endurance to recover.

Harry Neumann  Thanks to everyone who responded. Very inspirational.

Ross sounds like it is the way to go. It was the cardiologist that had initially suggested mechanical valve. We will see what the surgeon says

Rose Madura  Welcome Harry.  I agree with Grace about another opinion.  And don't lock yourself into a mechanical choice. Look into all options. It's the most difficult decisions but a very personal one. Please keep us posted and ask any questions that you may have.  

Darrell Malone  Hello Harry. Grace is spot on. Get other opinions for sure. Ross procedure could also be an option for you. Myself and many others have had this done. Ultimately it will be your decision like Grace says don't lock yourself in until you "shop" around. Go Jays! 

Pamela Gregory  I agree with Grace too! Make sure to get another opinion from a Dr. that has performed thousands of valves at a really good hospital. There are many different things you can do.

Harry Neumann  Thank you everyone.
This is the scariest thing I have ever had to think about! It is all consuming. This is all I can think about, can't sleep etc. Mind is racing. At times it does not seem like reality. but it is and its ME!!! Google may not always be a good thing!

I have gone back to the family Dr who discovered the murmur and we talked about the echo report and cardiologist info. I guess the good news is it is not urgent because I have no symptoms. So surgery referral has not gone in yet. Family Dr kind of implied it is up to me to get surgery sooner or later...

Yes I am also asking for the second opinion...
So the first question of I am sure many is is there any advantages to waiting to get surgery until I get symptoms??

The cardiologist seemed to suggest it will be necessary and happen in the next 2-3 years

Grace Mason   The when seems now to lean towards sooner than symptoms appear, because the heart will compensate for valve problems and begin to change. You may have no symptoms but your heart muscle is likely changing to compensate, like an enlarged left ventricle, for example. Studies have found that while the heart can remodel itself to a certain extent after corrective surgery, there is a point where the damage or changes to the heart do not return to normal. 
That being said, you also don't want to intercede too early, because often this is not a one and done surgery. If you can keep your original valve longer, then that may mean less further interventions down the road.
Another good reason for more than one opinion. Timing is also important.
Don't Google 😉, just kidding, but I agree some of the information out there is scary. Searching for information in this blog will get you more real now stories and many are also very uplifting.

Harry Neumann  Thanks
Agree "Searching for information in this blog will get you more real now stories"

I have read some of the good successful stories and does give me a bit of comfort. I think that could be my story

While everyone is different and everyone's case is different. The whole idea with the surgical approach they cut your sternum and open you up and then put you on a heart lung bypass... Then they STOP your heart to install the valve and shock your heart back alive is super freaky and terrifying.

I am a big strong guy that has never stopped and asked for directions, I never cry, I do everything and help anyone and figure things out myself, but now I need help

Thanks to everyone here reading and responding to my posts/questions. I don't feel quite a alone as I did when I first got diagnosed with aortic stenosis. You cannot imagine how much I appreciate you and this site

Pamela Gregory  This site got me through without question. No one understands how you feel, before and after, except for people that have been in your shoes. We are all here to answer any questions honestly and to let you know that we are all still here. I can tell you that for me, the actual surgery was not as awful as I thought it would be but the recovery did linger on longer than I expected. I was on a cruise however 3 months after