diagnosed with BAV 3.5 weeks ago, surgery in 6 days - suggestions

[Paul Schur]

My name is Paul, I'm 52, live in DC and I was diagnosed for the first time with a bicuspid aortic valve on May 26,2014. It's very leaky and I am scheduled for surgery on June 25, 2014 at Hopkins. I've had a short period of time to get my head around it.

I'm also having an aneurysm repaired.

I'm struggling between the tissue and mechanical valve. My concern has less to do with the blood thinners than the clicking noise. My fear is that I won't get used to the noise.

Any thoughts from those with a mechanical valve? I appreciate any information. This forum had been incredibly helpful in lessening my fear and anxieties.

Paul

 

[joanpieroni]

Hi Paul, I had BAV too and had it replaced 12 weeks ago. I'm 49 years old I chose a tissue valve because I didn't think I would be able to handle the noise, I guess you would get used to it. I also went organic because of the blood thinners. Side effects would be an issue for me, I love to cook and I cut fresh veggies and fruit full time where I work.
I think there are more people here that have mechanical valves here and have not said much about noise. I can also hear my valve at night when I am going to sleep pumping because it is so strong. Good luck what ever you choose, don't worry about pain, I'm sure the nurses will keep that under control.- Joan

 

[daveh]

Hi Paul,

I had a St. Judes mechanical aortic valve installed on May 15 of this year (I had a stenotic BAV). I thought I might be bothered by the click of a mechanical valve, since I have always avoided sleeping on my left side because I am too sensitive to my heart beat. I decided on the mechanical after weighing the pros and cons, and I am able to hear the valve click in a very quiet room. For some reason, the clicking does not bother me, either during the day or when I go to bed. Even a low level of noise masks the clicking, so most of the time I don't hear it. Just my own experience obviously, but I'm glad I chose the mechanical valve. - Dave

 

[R1Phrankey]

I have a mechanical valve placed 4,5 weeks ago.
I can hear it ticking in a quiet room or at night when laying on my side. I hardly hear it when I am on my back.
In fact, the ticking noise does not bother me, it is comparable with a watch ticking.
However, I can imagine that the choice is difficult to make and very personal. Once placed, it is not that easy to switch.

 

[bluefields409]

I am 4 weeks bio-prosthetic (bovine). At this time, mechanical wasn't an option for me so obviously, I have no "ticking". Now my heart has a sturdy and strong beat which I am aware of when all is quiet. For this I am most thankful. I would expect, based on what I have read, those that are aware of any tick are just as thankful.

When my time comes to "go mechanical" (and it will) I expect I will also be thankful. For me, silence would not be golden.

I know how it is when everything happens quickly and unexpectedly. Surreal doesn't seem sufficient. My timing of my surgery was also quick and unexpected, despite being aware of BAV since a wee lass. In hindsight, I want the actual wait time for next time, short but without any drama.

Thinking of you as you wait. Be informed to improve peace of mind. And the post=op manta is BREATH, rest/sleep, keep nourished, walk straight, don't over do, repeat, repeat.

Looking forward to hearing when you are in recovery mode.!!

Helen

 

[pellicle]

hey Paul

welcome aboard.

The concerns you have are pretty much what everyone says are their concerns. I have a mechanical which has been ticking for a couple of years now. its my 2nd replacement and it feels like the best so far. My aerobic fitness is actually better now than even in my 30's with the homograft valve.

Warfarin is a zero issue and if you are interested just search through the anticoagulation forum for my posts about it. Its not hard and if you do your own testing its even more reliable than the past.

One can get used to *anything* as long as one wants too. As soon as you set your mind to not getting used to it then you won't.

With an aneurysm repair (which is what I had last time) you remove the single largest reason for replacing a mechanical valve. Mostly they do not ever need to be replaced (unlike tissue prosthesis) and it is aneurysms which cause the reoperations. As I understand it there is a relationship between aortic valve disease and aneurysm.

Feel free to ask anything specific

best Wishes

 

[HudsonBill]

I had a mech. valve installed 5 months ago. I don't really hear the ticking unless I listen for it, sort of like living close to train tracks. After a while it fades into the background. The watch ticking comp is good, thats what it sounds like to me as well.

I have had a few instances where I was in a quite room sitting next to someone and they heard it....they are amazed, kind of fun actually. My wife likes to lean in close to hear it to make sure I am still alive. So you can make the best and have a little fun with it.

 

[Jayhawk]

I had a St Jude mechanical valve placed 6 months ago. I can hear it if I take time out of my life to just sit and listen, but on day to day activities I am busy enough enjoying life that I don't really give it much thought. Laying in bed at night I can hear it like a clock that is almost like a teeny cricket in my left ear. It doesn't seem to bother me when going to sleep either. I am soon to be getting a INR monitor for home use and am excited about that. As much as the lab at my Dr.'s office is nice, it will be nice to do it at home. I am going to use a service called Alere, if you want to research them. I don't live in fear of getting hurt or cut anymore than I used to.

Good luck to you as you travel down this road. I knew about my BAV since birth so had 48 years to prepare. Its nice to have time to prepare but not always so nice as it hangs over you. A friend of mine had bypass surgery and had one day to prepare. I suspect somewhere in the middle of the two scenarios are "best" but really its hard to swallow.
The surgery itself is not fun but not horrible either. I wasn't aware of much going on around me until I went to my step down room which was about 48 hours after surgery. The third day is the hardest as they wean you off of the meds and then it gets better.

Ask anything anytime and we will be there!

 

[slipkid]

I am new to the forum too Paul. Welcome!

I'm in my 50's like you. Had a bicuspid AV but no one ever told me about that part; I was diagnosed with a "leaky" aortic valve 20 years ago but was only told to "not worry about it" and never knew the underlying reasons.

I had a mechanical On-X replacement about 8 weeks ago. I don't hear it at all. One of the guys on the surgeon's staff said he could hear it in a recent office visit, but other than him I don't know anyone that has been able to hear mine with the naked ear. I'm a small guy, thin, and my valve is pretty small as I understand it (19mm). Maybe bigger valves make more noise?

The On-X website had a lot of info that might help with your decision process. Read the threads up here as well as googling around the 'net. Mine was replaced in an emergency situation & I did not have the luxury of researching anything to come to a decision. I just let the surgeon do what he felt was best for me (and he felt that was a mechanical valve). The discussion was actually quite comical (and surreal). But hey, I survived it all and now after having time for reading/researching/talking to people I am happy with what was done.

 

[Blair]

Hi Paul,
I had my valve repaired five weeks ago. During the weeks leading up to surgery I had decided a mechanical valve was what I wanted. Like you, my big worry was that the ticking sound would drive me crazy, and I'd be stuck with it. I was really worried about that. I'm one of those people that likes it quiet when I go to sleep. I read on the site here a lot, talked to people, and concluded that it wasn't going to be a problem weather I could hear it or not. The warfarin was a non-issue also. Met with the surgeon two days before surgery, and he recommended repairing my valve instead of replacement, so I went with that. Turns out I can hear my repaired valve when the room is quiet! Kind of a snapping sound. Doesn't bother me at all, even when going to sleep.

If I found myself facing this again, and the surgeon recommended a mechanical valve, I would still get one in a heartbeat (pun intended)!

 

[Paul Schur]

A big thank you to everyone! Such great info. and insight, which I very much appreciate. I'm feeling much more confident in making this choice.

I go in for surgery on Wednesday morning, and I'm both thankful that we caught it in time and grateful to learn that turning 50 does not = being out of breath after walking up a single flight of stairs or a couple of blocks with the dog. A faint and occasional audible reminder of that seems like it could actually be a good thing.

 

[TheGymGuy]

Paul, I live in DC area as well. Send me your phone via a private message here and we can chat on the phone about any questions you have. Also, read my post surgery post in my signature to get some ideas on what happens when you are in the hospital.

GymGuy

 

[Guyswell]

Paul,

I had my ascending aorta repaired and my aortic valve replaced at age 41. I chose the bovine pericardial valve because I wanted to avoid warfarin. Eight years later (two years ago), the bovine valve was almost completely closed because of calcium buildup and was replaced with a mechanical valve. The bovine valve was silent but didn't last as long as I was hoping. The mechanical valve clicks but it doesn't keep me awake. I now take warfarin and it has not been a problem. At your young age, the mechnical valave is probably chosen more often than the tissue valve.

 

[Paul Schur]

I've had a tough time signing into this system for a few weeks now. I just got a new password and was able to sign on. I just hit five weeks post surgery. No complications, all went well, and again, because of this site and all of your insight I had no horrible surprises. So again, thank you! I can safely say the breathing tube was by far the least favorite part of my experience. But I was prepared for it and that helped a lot. I was at Johns Hopkins for eight days, and as soon as they figured out the right pain med combo, took 3 days, my experience only went uphill from there. Days 2-4 were tough. I went with a mechanical valve. The ticking sound I heard, similar to a timex wind up watch, disappeared completely after one week and occasionally I hear the clicks though I barely notice it at all. I adjusted quickly to the warfarin, had a few adjustments and it's now on track. The mechanical valve was the right choice for me. I walk a few miles each day, I get to start driving again next week and it's just a matter of time before I'm able to go back to work. Again, thanks to all for all the support and for sharing so much information. Paul

 

[Lisa2]

It's great to hear that you are doing well, Paul. Keep on tickin'

 

[MrsBray]

Yay! I think it's really weird when someone sitting next to me can hear it (sometimes it happens!) and I *can't* hear it!