Brent's Journal

So yesterday marked 8 weeks since my surgery. I know I've not posted in awhile so I thought I would fill everybody in and let you know how things have been going. I also have some questions I was hoping some of you veterans could answer for me toward the end.

First off, I'm doing excellent. Some days I have a hard time believing I had full open-heart surgery and I have a bovine tissue valve and artificial ascending aorta inside my chest... The only outward evidence is the 8 inch scar which I have honestly come to be proud of; it's a reminder of how grateful I am that everything went so smoothly and that I need to live life to its fullest.

If I could offer any advice to anybody with an upcoming surgery I would say to have an extreme level of patience! Even though I was able to do some things in the first 4 weeks I had to plan accordingly, because you have a limited amount of energy while your body heals. A simple 2 hour outing to visit with friends or family will wear you out for the day. But over time things improve slowly. I was walking around 20-30 mins a day (about a mile or so) and my pain level was fairly low (except when getting up and down or out of bed.) But these first 4-5 weeks went by VERY slowly... It literally felt like 3 months (at least to me) and I was eager to improve and get on with my life.

Around week 5-6 I started driving again and also started a cardiac rehab program which I am still attending 3 days a week. I do about 40 mins of bike and treadmill workout (fast walking) and recently a little bit of extremely light weight training. Now in week 8, I feel pretty much about 90-95% of my old self but as I've been becoming more and more active I've noticed more pain around my sternum, mainly my intercostal muscles, when I breathe a certain way or sit in a particular position for a long time or push on my sternum in just the right spot (I know, don't push on it right ;-D ). I just find it odd since I had so little pain in the weeks following surgery for it to become so noticeable in weeks 6-8?

Has anybody else experienced this sort of pain? Am I pushing things too hard? Are my expectations too great this soon after surgery? I'm just wondering what everybody else's experience has been. How long did it take for you to stop experiencing any sternum pain?

a just a quick update everybody. less than 48 hours from surgery and I’m doing great! I will be much happier when I get this central drain tube out tho, makes it tough to get a full breath. But overall I’m amazed at how good I feel.

Thank you so much for all the warm wishes.. 🥰

A quick update on my surgery date. Due to some emergency cases they had to bump my surgery by one day. So now I am having surgery Saturday, April 30th as opposed to tomorrow. Thanks for all the well wishes!

Also a quick note about being bumped by a day.  Sure it's not ideal for my family that has traveled to be here, but my condition is very stable, and if there are others with more emergent issues I'm okay with that happening.

So I am having surgery this Friday, April 29th to replace my bicuspid aortic valve.  It’s been a difficult six months for me coming to terms with having to have surgery since I am very asymptomatic and can do most of the things I want, but when I see the numbers from the Echos, CTs, and MRIs it is clearly evident that surgery is necessary.  The aorta is nearing 5.0cm, the gradient is in the severe category, and the valve leakage is increasing.  In my 47 years I’ve been fortunate enough not to need any intervention, but I know that things will only continue to get worse if I do nothing.  Despite feeling “normal”, I realize that now is the time for me to undergo surgery while I am still relatively young and my heart muscle is still healthy and within acceptable range.  
I have done a lot of research, had multiple opinions, read through Adam Pick’s book in a single night, read through this community, and scoured the internet for any helpful information as to how to proceed.  I had seriously considered the Ross Procedure and had my mind set on it but have decided against it for various reasons (my age, the fact I’d now be worrying about two valves instead of one, and not to mention the large mismatch in size between my aortic root and my pulmonary valve.)  I also decided at one point to have a one-and-done mechanical valve that would last the rest of my life, but the commitment to blood thinners and the associated risks of them turned me away from this option.  I have decided on having a tissue valve as my aortic replacement along with the reconstruction of my dilated root and ascending aorta.  I understand that the tissue valve will only last 10-12 years (possibly shorter, possibly even longer), but I see it as the best option for me to live out my 50’s being healthy and doing the things I want to do.  When I need another replacement I hope the advancements in TAVR will continue to improve and it should be a much easier procedure than the one I am undergoing this Friday.  It took a long time for me to come to this decision, as all three options are valid for different reasons, but I had to choose the one that felt right for me and the life I want to live.  
It might have been a struggle at first and very confusing, but through the help of others and seemingly random events, eventually everything fell into place and I stumbled upon the correct surgeon, the correct team, and the correct location to have my surgery.  I am confident that I have made the right decisions.  Am I nervous?  of course I am..  But I am also excited.  Excited about the future.  Excited that I might feel “normal” when I exercise although I have no idea what that’s suppose to feel like.  Excited that I will finally be past this chapter in my life and moving forward to my next better version of me.  I’m calling it “brent 2.0” and I am looking forward to it.
Adam, thank you so much for writing your book and creating this community.  Congenital heart disease can be very isolating but what you created has really helped me realize that I am not alone. 

Hi everybody. I'm brand new here and recently read Adam's book (I binged the entire book in a single night.) I'm posting because I am currently scheduled for surgery but I'm having serious second thoughts. I'm afraid I haven't done my due-diligence and gotten a second opinion on my condition and I'm worried about surgery. I was hoping this community could help me out and give me advice. I'm a 47 year old who has had congenital bicuspid aortic stenosis his whole life. But in the past couple years, my aortic root, regurgitation, and velocity has moved into the 'severe' category and I know I'm in need of surgical repair. I have settled on getting the Ross procedure if possible with a second option of a mechanical valve. Does anybody in this community have experience with Texas Children's Hospital and the surgeons there? More specifically Dr. Edward Hickey. They have an Adult Congenital program there and I've put my implicit trust in them and I'm wondering if I should consider other hospitals and surgeons. Should I seek out other surgeons or hospitals in the Texas area? any recommendations? Could you all please help me make a decision because I'm honestly torn on what to do. I'm scared that I've rushed my decision without weighing all my options. Thanks in advance, brent...