1 year later, many symptoms returning - anyone else see a decline in recovery?

[Owen]

Hi everyone.....

Loving this forum, lots of wonderful information here. I'm looking for some answers.

March 21st, 2013. OHS to repair ascending aortic aneurysm at 52mm, and replace bicuspid aortic valve with mechanical. Had been having symptoms for about 6 months previously, including frequent shortness of breath, fatigue, muscle weakness, some dizziness/lightheadedness, chest pains that radiated across shoulders, down left arm.

About a week post-op, I had a bout of a-fib that wouldn't stop, lasted close to 3 hours. They finally put me out and shocked me, returning me to sinus rhythm.
The next week I had a collapsed lung, and spent 4 days in the hospital with a tube in my side.

3 months post-op, returned to work, feeling pretty darn good. I had a physical job at a manufacturing plant, running around, carrying, lifting, pushing. Worked about 3 months, only got winded occasionally, and a little tight in the chest. From the time I got home from hospital until I returned to work, I was walking distances, lifting , increasing right up to return to work.

Then symptoms started slowly returning - more fatigue,short of breath, muscle weakness. Getting back up from bending or squatting became more difficult (never had been before), and was accompanied by moderate dizziness,weakness, SOB.

Presently, I've had to take a less physical job. I walk around a store all day, doing light lifting (10-20 pounds), some bending, still quite busy but less strenuous.
I get winded quite easily, taking frequent mini-breaks when my legs get shaky and weak. If I lift the above weight more than three times repeatedly, I have to sit down and breathe. I can do stairs once,then need rest.

My cardiologist is being very thorough, I've done a treadmill test (I lasted all of 6 minutes), and we've scheduled a pulmonary function test, and another echo. Plus about 8 vials and two bottles of bloodwork. I don't get to see him for these results, however, until May 2nd.

I've been reading and hearing all the wonderful success stories, and I was expecting mine to be the same. And for the first 6 months or so, it was. I had energy at work I hadn't had for a long time. I really would like to know what changed. I'm not the youngest to have a BAV replaced, but I am only 44.

So has anyone else had anything like this? Anyone else been feeling great for awhile post-op, then had it seemingly reversed? Any thoughts would be greatly appreciated.

 

[epstns]

Owen, I haven't had anything like this, so I can't speak directly to the issues. I do, however, suggest that you call and see if there is any way that you can get a telephone conference with your cardio before May. Somehow that seems like an awful long time to be sitting there in suspense. I'm not sure how it works with your Health Service, but here if we get put off to a future appointment we can often at least speak with the doc or their physician's assistant to know something about what we will discuss when we are actually there.

Hang in there. There are probably several possible causes for your symptoms - and not all point to valve problems. Could be trouble with your meds or dosage, could be other physical heart-related issues that can be treated. Right now the important thing is to keep your sanity until you know what you're up against.

 

[Superbob]

Owen, I haven't had anything like this, so I can't speak directly to the issues. I do, however, suggest that you call and see if there is any way that you can get a telephone conference with your cardio before May. Somehow that seems like an awful long time to be sitting there in suspense. I'm not sure how it works with your Health Service, but here if we get put off to a future appointment we can often at least speak with the doc or their physician's assistant to know something about what we will discuss when we are actually there.

Hang in there. There are probably several possible causes for your symptoms - and not all point to valve problems. Could be trouble with your meds or dosage, could be other physical heart-related issues that can be treated. Right now the important thing is to keep your sanity until you know what you're up against.

Steve expresses very well exactly what I was thinking. Given that you are having symptoms, I would try to get some results from the tests before your May appointment. As Steve said, what you are experiencing could be non-valve-related. Still, if there are medical issues of any kind they ought to be addressed as promptly as possible.

 

[ChicagoMammy]

I completely agree with Steve and Bob. Call and ask for your results. You would hope if it was anything big they'd call you back but I would push. I had SOB that was getting worse towards mid February. I called my cardiologist who gave me an appt for April 14th. She told me to see my PCP (GP) in the meantime. I saw him a few days later, he sent me to the ER. And here I am 5 days post op and April 14th is still three weeks away. Push for your health.

Sorry this is happening to you, but it does sound like something is going on.

 

[njean]

You have gotten excellent advice from the previous posters!

Press your cardiologist for the results of your test results! May is far away still and if there is anything else going on with your heart, the sooner you find out the better! This is your health and you are your own best advocate, so take control!

Wishing you better days ahead! Let us know what is going on!

 

[Owen]

Thanks so much for the responses, much appreciated!!
I'm told my cardiologist is on vacation till May. But what I can do is get into see my GP and I'm sure she can see the results. In B.C. here, they've got all patient files online for any doctor to look at.
I can at least get results from the bloodwork - the other two tests aren't until next month, unfortunately. Our hospital here (small town) is usually overbooked, they already rescheduled me once, due to staffing issues.
Thank you all for the encouragement. I'm functional, but at a much lower level than I was a few months post-op, which is what's so weird about this.

 

[ski girl]

Assuming it's not valve related . . . one possible cause for all this is anemia. And that is very easily treatable without a doctor AND you can start right now - iron pills! Try it, they won't hurt you and within a week or two you could be feeling MUCH better.

I had this happen to me although it was about a month after surgery, I had been feeling really quite good and then walking more than 50m became an impossible chore for someone who had run a 12km race six weeks before. Give iron a go!!

 

[Owen]

Thanks, ski girl - I'll be checking with my GP for at least the bloodwork results very soon. I didn't know anemia could cause those same symptoms (SOB, weak/shaky legs, chest tightness). It's quite possible that my iron could be low, as I stopped taking my multivitamins after surgery due to the Vitamin K content.

 

[ski girl]

I prescribe a steak!! There is no reason to wait to start treating anemia - even if you don't have it, you're not doing any harm in knocking back iron pills. Now wouldn't that be an easy fix, eh . . . .

 

[river-wear]

Just one word of caution: too much iron can be very bad for you. However, that steak sure sounds good! Your GP will be able to tell you if you should start supplements.

 

[dornole]

Yup, and it's easier for dudes to overdose on iron, so if you do have anemia or an iron deficiency issue, get medical advice on a therapeutic dosage before taking more than a standard multi, and ask when to recheck levels.

I was told that my bad valve could actually contribute to anemia (turbulence breaking up some of the red blood cells).

 

[Owen]

I didn't know that re: iron o.d. I'd actually be a little surprised if my iron is low, I've always been a red meat person! Although I did have to stop my vitamins....

Never heard that about the bad valve contributing, either....