Stephen's Journal

Marie Myers  Never in a million years did I think I would need open heart surgery..I totally understand your overwhelmed feelings..

Annette Sterzel  I felt the same way. Mine was one year ago. Feel so much better. Thoughts and prayers are with you. 🙏

Stephen Jones  Marie, this was the same thought that I have had, never in a million years would I have thought I would have OHS! Thank you for the encouragement your journey is an inspiration to me!

Stephen Jones  Thanks Annette, I’m very glad that you are feeling better it gives me hope that I can also. I hope you keep feeling better always.

Stephen Jones  Thanks Susan. I am very curious about the TAVR but doc says I don’t qualify. Still worried although your story and  words of encouragement are a big help to me!

Sue Maize  I actually knew that one day I would need AVR surgery but because I didn’t have symptom until just a few months ago, I was still shocked to find out, as if finding out for the first time. It’s also why I lean so heavily on this community too—no one knows who hasn’t gone through it or walked with someone who has. We’re here for you Stephen! ❤️‍🩹🙏🏻

Stephen Jones  Thanks Susan. I am very curious about the TAVR but doc says I don’t qualify. Still worried although your story and  words of encouragement are a big help to me!

Sue Maize  TAVR is usually done after having had a regular tissue valve replacement that has worn out, or if you’re quite a bit older it may be done because open heart surgery is too risky. I would look into the Ross too and find out if there are any well experienced surgeons near you who do it. The key to the Ross is also that you get someone who’s done a lot I.e. minimum of 75. 

Sue Maize  I would really encourage you to do your own research on all 3 options to do a risk/benefit analysis of each. I looked up everything I could find and asked 2 surgeons every question I could think of until I felt satisfied that I was with the right person for the right procedure. And 2nd or 3rd opinions like Rose said, are wise with any option you’re considering. 

Rose Madura  Stephen, I don't know what's worse, finding out later in life or like me, knowing since I was 7. I had my surgery at age 58 nearly 7 years ago.  Anyway, I feel so much better know.  God bless you. We are here for you.

Grace Mason   Hi Stephen,
I had SAVR at age 56 last September. It is definitely a rollercoaster of emotions. I was fortunate to have time to contemplate a future surgery as I learned I had an aneurysm and bicuspid valve at age 32 and was on a watch and wait for the next 20+ years. It was still not easy to digest when told "it's time,". I was also asymptomatic.
You are not alone as many here can commiserate with you.
The good news is surgery and recovery is not nearly as bad as you imagine. You have found a great support here.
I imagined I would need help even going to the bathroom post surgery but that was not the case. I was walking on my own in less than 24 hours post surgery. 
There is a lot of helpful information here you can find by using the search or reading others journals. Everyone recovers differently but medically SAVR has progressed so much in the past 20yrs, it really is a very "safe procedure". Ask any questions you might have and someone or several will chime in. Welcome to this very wonderful group ❤️

Sue Maize  Welcome Stephen—I’m so glad you found this group! It has been a God-send for me. I am 56 and will be having the Ross procedure on June 5. This option was not brought up to me with my first surgeon but I found out about it on here and then began doing research. It is something to consider if you are under 60 and in good health otherwise, Ie. Not diabetic and have healthy kidneys, no other major heart issues. It is more complicated than a tissue or mechanical AVR because it replaces your aortic valve with your own pulmonary valve and then you receive a donor pulmonary valve, all human live tissue. The outlook is quite good long term, however. Many on this site have had it with great success. Have you met with your surgeon yet? It would be worth considering, especially if you’re healthy and active. 
there are some really good videos about on this site and lots of good articles about it online, just make sure you look at research that is fairly recent ie. last 6-8 years. There is also a list of surgeons who perform it on Rossprocedure .org

Stephen Jones  I haven’t met my surgeon and I don’t have a date yet. I will definitely research the Ross procedure. Thank you so much for this information. I pray for a great op and recovery for you. I know you will do great. 

Sue Maize  So will you! Reach out and ask anything or if you just need some support—this community really cares for each other. ❤️‍🩹🙏🏻

Rose Madura  Stephen, I'm sorry you have to go through this. It's scary and your feelings are valid.  Grace and Sue give excellent advice .  I'll throw in that you should consider a second opinion. Do a lot of research and ask questions, both on this site and to the doctors. Then you will be able to make an informed decision and run with it. You can do this!  The odds are in your favor. It's no picnic in the part, but doable.  Godspeed.

Pamela Gregory  I watched the Today show Friday and they had a special about a General in DC that didn't know he had a bad valve. He went out for a run and collapsed on the street. A family coming home from dinner saw him and did CPR for over 10 mins till the ambulance took over and the surgeon fixed him. All of this happened and they treated him as a John Doe because he had no ID on him. He is doing well now and met the man and Dr. that saved his life. We are all relatively lucky to know something is wrong and have the opportunity to have it fixed before something catastrophic happens. I was really scared like you but think about how fortunate we all are and that we have so many wonderful surgeons to help us

Dan Fouratt  I am 63 and 8 weeks ago had my valve replaced.  I was asymptomatic and in decent shape.  The doctor used a minimally invasive (MI-AVR) approach and you should ask your doctor if this will work for you.  There were over 68K MI-AVR or SAVR performed in the US last year. This gave me comfort, it is a major operation but it is common. Find a good to great doctor.  From the time I found out to surgery date I increased my exercise getting in as good of shape as possible, it will help the recovery.  I focused on the future and not the why. After 8 weeks I am more or less back to full activities. You will get through this and be better off for it.

Darrell Malone  Hello Stephen. This all started for me two years ago at age 53. No symptoms but Dr heard a murmur.  I was then told that I would need my aortic valve replaced. Like Sue I found out about the Ross procedure here. Fast Forward I'm 55 and almost 5 weeks post op with the Ross procedure. In the beginning I had all those emotions. It's wierd to say but they do these procedures everyday and are very successful.  My recovery personally is going very well. It is possible you are a candidate for the Ross procedure but maybe get a couple more opinions. When you find the right Heart Team you will feel a lot more at ease. I wish you all the best.