Harry's Guestbook

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.

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