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FC in Texas

Active member
Joined
Mar 6, 2012
Messages
42
Location
Austin, Texas
Hi. I just wanted to introduce myself, relay some of my story and hope that I can contribute or help others who face the same challenges. I am exactly one week out from my AVR. I recently turned 50, am married and have two kids (11 and 7). This forum has been a wonderful source of information and inspiration and I thank all of you that have contributed along the way. It really does help folks.

I was initially diagnosed with Aortic Stenosis probably 10 years ago, with a slight, but recognizable murmur, but little or no restrictions or symptoms. In fact, at the time, I was a competitive cyclist, competing at a national level in the over 40 age group. I continued like that for a number of years, but had to quit competing and limit exertion starting in 2008 (fainted on a bike ride). I didn't really have any symptoms but I was now on the 6 month echo/check up routine and the doctors didn't want me overdoing it.

Summer of 2011, I began to have more symptoms and could no longer ride. I knew I was in the waiting room, but was hoping things would deteriorate slowly. This "waiting room" period really was tough to me. Everyday I felt like symptoms worsened, physical ability declined, and I started to have a lot of anxiety about my kids, etc. I wondered if I was just going to fall over and die walking into the office every day.

After meeting with a couple of surgeons, I was faced with the "which valve" decision. One of the surgeons was a proponent of the Ross Procedure, but given that I had undergone Hodgkin's disease radiation treatments in my early twenties there was a concern about the quality of the other valves and scarring related issues. We also did not know at that time whether my AS was due to a BAV, radiation damage or some of both.

I ultimately went with a bovine tissue valve (Carpentier-Edwards 3000TFX) over the mechanical. As most of the discussion on this topic confirms, there is no perfect answer and each has its compromises. For me, I wanted freedom from taking the anti-coagulants. I am a very active person (or was and plan to be) and want to be able to do stuff with my kids without that concern. After a lot of investigation, I also became optimistic that when I need a second replacement, OHS will no longer be necessary. I guess we'll see.

Anyway, the surgery went well and my recovery has been so far as good as I could have hoped. Surgery on Thursday, out of ICU on Friday and home on Monday. Turns out the diseased valve was tricuspid, so it looks like the radiation treatments did the damage. Now, just focusing on my walks and trying to set a new record on the breathing spirometer. Just hoping that foggy head feeling goes away soon.
 
Welcome FC. from another bovine valver. You seem to be doing quite well. I was lucky in that I didn't suffer from a foggy head, but truly unfortable neck and shoulders, but with walking, eating and breathing I all passed. Good Luck to you.
 
Thanks, Chris. The neck and shoulder thing here too for sure. For me, I think its a combination of whatever they did to me in the OR and the fact that I subconsciously keep those muscles tight trying to limit movement around the sternum.
 
Likely so. A couple of members have suggested massage and hot showers with water directed on sholders and neck. So just remember to take it one day at a time. Once this is all behind you, you will be able to enjoy your family and moments together so much more. Seeing the daisies from the flower side of life is 1000% better than the root side. Hang in there my friend.;)
 
Welcome, friend! I am new here as well, and hoping to absorb all of the information that I possibly can.

Does the surgeon cut into the sternum in order to reach the heart? What is the healing time on the sternum?
 
FC, you are in the very early stage of recovery so walking, breathing, eating, sleeping is pretty much all you need to focus on. I felt much better after week three. My valve was tricuspid also but my surgeon thinks it is still a genetic problem; there is no way to know with certainty as with you. I see we also have the same valve. Let us know how we can help.

Larry
 
Walk, breathe, sleep, repeat! I was just a year older at surgery, same valve. 5 years later, all is well with a few marathons under my belt again. As you recover and get ready to get back on the bike, please stop on over at cardiacathletes.com. As much support as we get here for the surgery, you can get the same kind of support there for returning to atheletic endeavors. We have MANY competetive cyclists there, including Bermuda's champ.
 
This place rocks. Thank you for all the comments and advice. I will definitely look up the cadiacathletes site.

And yes, pgammo, cutting through the sternum is currently the only way to perform the AVR. I am just a newbie at this so others probably have been info but healing the sternum is the longest part of the AVR recovery. Usually about 6 weeks. In fact, the rehab nurse told me a story about a guy my age who had an AVR and was feeling pretty good (almost normal) at 4 weeks. Apparently he cracked/rebroke his sternum while throwing softballs to his daughtr and had to get it all wired up again and start over. I ain't throwing anything soon.

I blame this comment on my neck and shoulder being wound tight right now.
 
Fundy-

It was considered then. There were some additional circumstances surrounding the fainting, like I went riding with little or no breakfast and had taken a blood pressure med just before. The first cardiologist I saw afterward did a bunch of things including stress echo, etc. I thought I did really well on the stress echo, but he was starting to suggest surgery then. When I got a second opinion, I did more tests and the new cardio thought I should keep riding (just keep HR under 145) given that I was otherwise asymptomatic. Not sure whether one was right or wrong, but I preferred the latter. I only started having what I would call daily symptoms 3 years after that fainting.
 
Welcome FC,
Great to hear you're progressing so well. As others have said, focus now on the eating and resting, and you'll be tearing up the hill climbs again soon enough. This is a great group of people, always willing to offer support as you're healing and to applaud the cycling accomplishments to come, too.
 
spartan, thanks for the welcome. I noticed your location and sig line. Looks like we got our AVRs at the same place. It also looks like you might be personally familiar with the hills I used to and plan to ride.
 
Welcome from a fellow runner and cyclist. I am yet to join you in the AVR club but that will happen on the 10th April. It will be interesting to hear when you can get back on the bike and I hope your recovery keeps on track. I am going for a mechanical valve so maybe we can compare notes!
 
Welcome from a fellow runner and cyclist. I am yet to join you in the AVR club but that will happen on the 10th April. It will be interesting to hear when you can get back on the bike and I hope your recovery keeps on track. I am going for a mechanical valve so maybe we can compare notes!

brommers, I will let you know what they tell me about getting back on the bike. My hope/expectation is that after the full 6-8 weeks for the sternum to heal I will be far enough along in cadio rehab (4 weeks there) that they might give me the OK to go for an easy ride. Since its pretty hilly where I live, they might make me wait a little longer - it's hard to find an easy ride. Hang in there in the meantime. I can truly say that for me the two weeks before the surgery were worse than the two weeks after. Everyone always talks about the other side of the mountain. It's true, but I to me it seems like the other side of the valley because your life's trajectory goes from downward to upward and onward.
 
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