First post - Bicuspid Aortic Valve

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MethodAir

Well-known member
Joined
Apr 27, 2015
Messages
204
Location
Canada
Hello all,

First post here. Here's my story. Late last December, I started experiencing what a doctor initially thought was acid reflux (something I had never had before). The doctor then prescribed Tecta, a proton pump inhibitor...but the symptoms continued.

At a follow up appointment at the same walk in clinic, a different doctor listened to my heart and lungs. 'Has anyone ever told you you have a heart murmur?'

No, this was the first time. I had been the 'picture of good health', 43 years old, active in powerlifting and drumming...and had undergone a fairly recent medical checkup without mention of it.

I watched as the doctor filled in the murmur description...'Severe'. He told me to 'Go straight to emergency if you notice any symptoms'

As others have described, one leaves the medical office in a degree of shock. There is a realization (although perhaps initially mixed with an element of denial) that one's life is about to change...in a big way. And it is.

This year, I had OHS to replace a severely regurgitating bicuspid aortic valve, and repair an ascending aortic aneurysm. The cardiac surgeon described the 'flailing' valve regurgitation as 'rushing'.

I was fading fast going into surgery and rapidly losing the ability to breathe.

Somehow, I made it out alive, despite the cardiac surgeon describing the prognosis as 'hour by hour'.

Seemingly, overnight, I had lost all my muscle mass (literally), replaced with 25 new lbs of fluid retention, from my feet and ankles, to my hips and stomach.

Fast forward to now...I'm running and walking 3 miles a day (sprints and steady state cardio). I lost all the water weight months ago and am regaining muscle mass.

My resting heart rate was around 90bpm after surgery. Today, around 5 months later, it is approx 45bpm (with a sinus rhythm), which I attribute more to the cardio and muscle memory, rather than the 2.5mg daily dose of Bisoprolol, (which I hope to come off of soon). Systolic blood pressure has come up too. Resting systolic was in the 80s post surgery, now around 115. Thankfully, the angiogram showed my arteries were crystal clear.

My recovery continues. Thank you to this site and its members for providing an excellent resource at times like this.
 
Hi Phil - welcome to the forum.

I can't get over the way doctors prescribe proton pump inhibitors these days without actually checking that a person has a gastric problem. That happened to me with regard to my lung problem - respiratory consultant thought I had reflux which was causing my cough. No it wasn't ! There was nothing wrong with my stomach and I refused to take the PPI's. A CT scan - actually a CT angiogram I'd had - had showed there was inflammation in my small airways, once I showed a copy to the consultant he saw I had small airways disease.

I also had the out of the blue "You have a heart murmur you know" when I went to see a GP when I was 25 for a chest infection ! The doctor was surprised I didn't know about it ! That was the first time that I found out that I had bicuspid aortic valve (subsequent cardiologist guessed it), but I didn't have to have the valve replaced until 35 years later, and it was replaced before I had any symptoms so I was luckier than you. Glad you're feeling so much better now and that your recovery continues.
 
Thanks Anne.

When I read your experience, I have to concur. The doctor's 'logic' defies me at times.

They managed to sneak a Tecta into my post OHS pill array. Having had experience with it from my previous misdiagnosis, I asked them to remove it. There I was, on Dilaudid, and I'm taking a pill that stops me from absorbing virtually all magnesium and other nutrients...

Regarding the bicuspid valve, the plus side from my experience (if there is one), is that there was a relatively small window from discovering the murmur to receiving surgery. Recent ECG and stethoscope heart and lung examinations turned up negative, prior to the symptoms emerging.

I suspect heavy weight training (squats and deadlifts with valsalva maneuver) may have caused some kind of acute valve injury...it was blown out. One of the first things I noticed was my diastolic blood pressure had suddenly dropped to around 40 (previously around 80). Heart rate was elevated. It came on very quickly from there.
 
MethodAir;n857067 said:
TThey managed to sneak a Tecta into my post OHS pill array. Having had experience with it from my previous misdiagnosis, I asked them to remove it. There I was, on Dilaudid, and I'm taking a pill that stops me from absorbing virtually all magnesium and other nutrients...
Yes they do that for everyone no matter if they have digestive issues or not. I'm not sure the rationale behind that - they gave me Omeprazole (spelling ?) a PPI post surgery. I said "Do I have to ?" They said yes, I thought that was crazy and didn't understand their logic at all. When I was discahrged I asked my GP and he said I could come off it as long as I took Gaviscon Advance. Gaviscon forms a 'raft' to help stop reflux but doesn't inhibit absorption of any nutrients nor interfere with digestion. So taking that 'pleased' the medics and isn't harmful.

PPIs are a really bad medication IMHO, because they cause all sorts of problems, espeically when people take them long term, they stop absorption of minerals such as calcium and vitamins such as B12. The stomach acid is supposed to be very strong acid - the strong acid fullfils very important functions to do with digestion. And what's more, taking PPI's doesn't stop reflux anyway ! Any reflux stays but instead of being acidic it's alkaline ! But shouldn't they try and work out why someone is having reflux and deal with the cause ?!?!

Come to think of it, since PPI's don't stop reflux, and presumably it's the reflux they're trying to stop post surgically so you don't inhale the reflux and damage your lungs, but Gaviscon Advance has the ability to stop reflux and is not a systemic med, why don't they give Gaviscon Advance post surgically ?
 
The logic speaks to me of -- nutrition doesn't really matter. Like you say, if you can't absorb minerals and electrolytes, that can lead to all kinds of other problems.

I noticed the magnesium I was taking at the hospital post surgery was not having any effect (ie drawing water into the colon). They didn't argue when I told them I wasn't interested in taking the Tecta, that it would interfere with nutrient absorption (I wasn't experiencing reflux anyway). Several days later after stopping, I was finally able to relieve the side effect of the pain killers (constipation), naturally as the minerals were now absorbed.
 
Anne, you mentioned in another post that you do some heavier weight training. What's your take on the safety of that for yourself? I haven't found anything that indicates it should be a problem. In fact, some of the fastest recoveries from aortic valve replacement that I've read about, weight trained hard. It makes sense to me. The body is in a weakened state, increasing some lean tissue mass has all kinds of benefits, one would imagine.
 
MethodAir;n857084 said:
Anne, you mentioned in another post that you do some heavier weight training. What's your take on the safety of that for yourself? I haven't found anything that indicates it should be a problem.
It all depends on your recovery and how the sternum is healing. I started cardiac rehab at about 8 weeks post op. I had one to one cardiac rehab because the cardiologist felt that doing rehab in one of those rehab classes wouldn't be appropriate as I had been fit prior to surgery and most of the people in rehab classes were there because they were unfit to begin with. Because I was having one to one the cardiac nurse - who was also an ironman sportsman in his spare time - was able to tailor the rehab specificallly to me so, since his first lot of rehab wrecked my ankle (grrr !), he started me on a weight lifting regime. He knew I wanted to get back to doing that. Lighter weights than I was used to but it was a start. At a certain point my cardiologist said there were no more restrictions. For quite a while I would continue to wear a heart rate monitor when lifting just to keep an eye on things. I am still mindful of my sternum with certain exercises, such as dumbell fly, as I can definitley 'feel' things a bit weird along it one side, but that's nothing to do with my heart which feels fine !
 
I got the go ahead from my doctor (who is very progressive and knowledgeable in sports performance) to start weight training, and come off beta blockers (as my resting heart rate is now in the 40s, Was on Bisoprolol 2.5 mg). Will get a heart rate monitor to be on the safe side and avoid dips and pec flys (their shoulder safety is controversial anyway), focusing on squats, deadlifts etc to get the body strength back up.
 
Hi Method Air, what kind of valve did you get? I'm new to the forum and haven't posted my heart story yet. I'm 8 weeks out from my 3rd surgery. I have an On Ex valve.
 
Hi Method Air, what kind of valve did you get? I'm new to the forum and haven't posted my heart story yet. I'm 8 weeks out from my 3rd surgery. I have an On Ex valve.
 
Hi Method Air, what kind of valve did you get? I'm new to the forum and haven't posted my heart story yet. I'm 8 weeks out from my 3rd surgery. I have an On Ex valve.
 
Hi Summer. Welcome to the forum (I recently posted here for the first time too).

Like you, I got an On-X valve. The cardiac surgeon presented a mechanical valve as the only viable option, considering my age. It made sense to me. It also made sense when it was explained how the valve would be better 'seated' when used with a dacron graft for an ascending aortic aneurysm repair. It sounds like you are making excellent progress. All the best to you.
 
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