Rex's Journal

Rex Austin   Hey Richard! Thought about you several times.  For some reason I was having a hard time getting back on here.  Seemed like no one else was responding to my posts.  Really appreciated your help in locating Dr Boulton.  I seem to still be struggling most days.  Getting an appointment with my cardiologist soon.  Not sure whats going on.  Hope you're doing well.

Klara Čičić  Hi Rex, I had mitral valve "Barlow's disease" with also Borken chord. I had minimally invasive repair with goretex chordae replacement, maze and LAA closure. Maze is here to prevent future AFib, and LAA closure to prevent stroke from blood clot forming in that particular place (the appendige). Operation went smoothly. It was quite complex repair cause one of my leaflets was hypoplastic, but that is a rare thing. Your plan sounds good. But if you are unsure, ask even for a third opinion. 

Rex Austin   Thank you Klara. Did everything go well? Still going well? How was the mini thoracotomy? Are you glad it was done that way? 

George Gardopee  Hi Rex. I’m almost 17 months post-mitral valve repair. My problem wasn’t Barlow’s; it was likely a congenital leak aggravated by endocarditis. I needed broken chordae replaced by Gortex. That’s a common and very straightforward repair for mitral valves. If you end up with a repair you will almost certainly get annuloplasty too - that’s a ring sewed around your valve to keep it from stretching open. 

I wanted minimally-invasive surgery but I ended up with a sternotomy. I am now happy I did. The surgeon needed to fix my leaking tricuspid valve while he was in there and he didn’t expect to - if he had done a minimally-invasive approach he would not have been able to do the tricuspid valve at the same time.  My recovery was painless and I have no lingering issues. Others here who have had minimally invasive surgeries will likely offer their experiences. All I can offer is that if I had to do it again, I’d have another sternotomy without reservations.

Susan Lynn  Rex - I had Barlow's disease and a minimally-invasive mini-thoracotomy for the valve and chordae repairs. In the name of full disclosure, my connection to bypass was done through the artery above my thigh, so there is more than one area to heal. My surgeon froze the nerves near the mini-t incision, so I didn't have any post op pain. I did have numbness, pins and needles, and occasional sharp momentary sensations in my side and back in the year that followed. The entire process was very tolerable. I was in and out of the hospital in 3 days and would absolutely do it again. However - make the decision that's right for you. Just find a surgeon who does a high volume of the procedure with success. Do your homework - it will make all the difference in your confidence and attitude on game day!

Klara Čičić  I am happy with mini thoracotomy, but would've been happy with sternotomy, too. Sternotomy hurts less, cause there's less soft tissue and nerves cutting, but it causes longer discomfort, takes longer to heal... Each has its pros and cons. The only thing that is important is quality of repair and experienced surgeon. My only wish was a successful repair. I got less that 100% closure of leaflets, which is not rare in Barlow's due to it's complexity to "line up". It was a bummer, but I know I should be grateful that I didn't get mechanical valve, you know.... My story is extra rare as this one leaflet was short, so K should be happy with the result even though it is not perfect. I have mild regurgitation left. I need only yearly echo now. I am 6 months post-op and feel fine, finally I feel like myself again. I took 3 months of cardiac rehab which I highly recommend. All in all, phisically and mentally really challenging process that made me a stronger person I hope, certainly one that values each moment. 

Rex Austin   Thank you all for sharing your stories. Everyone seems to be in consensus they’re glad they had their surgery. I’d be lying if I said I wasn’t dreading it. It sure helps to hear other stories. Especially ones where you guys are months or years out and still doing well. I’m sure I’ll have more questions in the future! Hope everyone has a happy and blessed Easter. 

Tom Everson  Hi. I suggest you spend some time in figuring out what  type of medicare advantage plan works for you. Medicare pays 80% of your medical expenses ( you have to figure out the 20%).  Some advantage plans cost $0 per month and some come with prescription drug plans. They also have various levels of deductibles, co pays and restrict what healthcare organizations you use ( but again you pay $0 per month  for coverage. )Another plan called MEDIGAP. costs $200-300 per month does NOT have a prescription plan ( have to sign up for one ) but you can use any health care  organization as long as they accept original Medicare ,  have No co pays and most have No deductibles.   I guess it is PAY ME NOW or Pay me later. You can only sign up for MEDIGAP  ( in most cases) the very FIRST TIME YOU ARE ELIGIBLE.     FIND SOMEONE YOU TRUST and ask for help  in deciding what works for you.  Most people do not know about the Medigap  plans so you may have to ask for details. Good luck

Rex Austin   Thank you Susan! Music is a big part of who I am/was before December 5th 2022. Hope I’m able to get back out there and play again. Read some of your journal. Looks like you’re 5 years post surgery. Congratulations! 
Tom, thank you for that great information! I will certainly check on that medigap insurance. 

Rex Austin   Here’s a little bit of what happened to me if anyone is interested in reading. 
I went into pretty severe afib December 5th, 2022. Knew I had mvp most all my life with episodes of mild afib but that time was very different. It just wouldn’t go away. Dumb me should have went to the hospital that night but kept thinking it would be ok. Then I came down with the flu. Finally got in to see my doctor 16 days later and was sent straight to the er in heart failure. Echo showed severe mitral regurgitation. Was scheduled for a TEE and heart cath February 2nd. Met a surgeon the 23rd. He says it’s not repairable and will have to be replaced. Says he can’t do it minimally invasive. Has to done open heart. Plans to do a maze procedure and says I have a “pouch’ he needs to repair. Supposed to call back when I decide which type valve I want. Hoping to find a surgeon that will be able to repair mine instead of replacing it. As of now, I’m scheduled to go back and meet with him again June 8th with a plan to do surgery in August as I will be going on Medicare then.