6 months after aortic valve & root replacement surgery

[jennifer]

Help!
Am working 20 hrs a week and still get breathless, have chest pain (mostly at night) and feel really tired.In fact have started to feel like Im going backwards.Work is fairly physical, involving lifting etc. Am walking 30min most days.Have 8 yr old son.
Have trouble getting to sleep, have hot flushes and migraine auras - think these are probably menopause symptoms as am 48 but not sure as had hysterectomy 5 years ago.
Last saw cardio in Dec. Had echo which he said was fine.
Cardioligist thinks symptoms arent cardiac related and I think he thinks Im being a hypochondriac.GP puzzled but has ordered hormone level blood teats.
Does anyone else still have symptoms so long after surgery. Had mild heart failure. Severe aortic regurgitation with aortic root enlargement 65mm,
Bentalls procedure . St Jude valve.
Only medication is Warfarin.
Feeling very frustrated at not being able to live a normal active life.Dont know whether to just accept it and hope health will improve or try & see a different cardio.
Would really appreciate anyones feedback.
Jennifer

 

[Phyllis]

Welcome, Jennifer. I'm sure many will be along soon to help, but it sounds like you have an active and busy life and many here have felt that it took a good year to completely recover. Don't get discouraged and keep on your doctors, even finding a new one, if you feel you need better answers. We are our own best advocates!

 

[kbheart]

Hi Jennifer,
It's been almost 9 months since my surgery and I had pain, especially at night, for the past 6 months. After several trips to my cardiologist, a gastroenterologist, and my primary care doctor, they finally sent me to a pain specialist. It turns out that I may have some nerve damage from the surgery--or possibly from over-doing it on the rowing machine during cardiac rehab. Two weeks ago I started on a medication for nerve pain, Lyrica, and have felt great since then. I couldn't believe all the housework and yardwork I completed last weekend!! I was like a new person.

Anyway, just keep in mind that everyone has different experiences and that one doctor might not be able to figure out what's going on but another doctor may. It was the 4th doctor for me. Pain specialists are usually the last resort. So keep telling the doctors your symptoms and look for new doctors if they're not working with you to find a solution.

Good luck! I know how frustrating it is!!

 

[WayneGM]

Eveyone is different, but I can relate to much of what you're saying. I thought my recovery was slow and had its ups and downs. It wasn't straight up.

At 6 months I was back to work full time at an office job which isn't very physical and was wiped out every day. I'm now at 14 months post-op and finally starting to feel like my old self....about 90% of the time. I still need more sleep than I did before and don't have the physical stamina I used to but doing far more than at 6 months.

I still don't sleep as soundly as I used to, and tend to wake up once or twice a night, often because of dreaming. Before, once I was out I was out and I rarely recall dreaming. My wife used to say I could stay asleep even if a freight train came through the bedroom.

Don't get discouraged and be patient. Good luck.

 

[Jkm7]

I am three and half years out from OHS and still have pain from my sternum that is directly related to weather. I always know when we are getting snow or rain and it gets wearisome. I know it's a small price to pay for having been given a 're-birthday' but, nevertheless, I get tired of it. I cannot sleep on my stomach even on a 'dry day'. I think some of us are not totally free of all pain even with time. It isn't extreme and is tolerable but unpleasant.


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[Karlynn]

Welcome Jennifer. I'm so sorry that you aren't feeling tip top right now.

One of my questions is: How soon after surgery were you lifting and being physically active? If you started doing a lot of physical things before you were at a healing point that could tollerate it, you may have/be prolonging a healing process that can't be completed because of subtle reinjury of certain areas. Just a thought - certainly not the answer. The "mom" component set off a few bells for me. (Been there, done that!)

My 2nd thought is - don't let any doctor tell you that you are being a hypochondriac. It could be very coincidental that it's premenopause symptoms, but it just seems too coincidental. Or maybe the shock to your system that open heart surgery gives your body may have pushed it into the menopause stages.

My biggest advice - if you feel things are not "right", keep pursuing it until you get logical answers. Don't let any doctor make you think you are blowing things out of proportion.

Best wishes.

 

[marciemarine]

Hi! I had both the aortic and mitral valve replaced about 5 1/2 months ago with ONX valves, and I sleep well and don't feel chest discomfort. I do get exhausted sometimes if I've had a busy day at work, but not breathless. I don't know what normal is, but I do feel better than before the surgery. Now if I can only get rid of the arthritis in my feet and general signs of aging. Thank the Lord that my menopause systems are almost non-existant. Good luck to you. Marcie

 

[tobagotwo]

My suggestion would be to get checked for possible pulmonary hypertension. Secondary pulmonary hypertension frequently exists while the heart is actively dealing with a bad valve, but sometimes primary pulmonary hypertension develops from it, or the secondary takes extra time to go away. It would explain some of your issues.

Best wishes,

 

[jennifer]

Thanks for feedback

Thanks for feedback

A big thank you to the people who answered my plea for advice.
I now have some stuff to check out when I see my doctor in two weeks.
The nerve damage suggestion and the possibility of pulmonary hypertension struck a chord, I had a PE last July which was unexplained and my Dad had lung disease.
Failing theses explanations I may just have to "hurry up & wait" for time to heal. I do find the increased breathlessness a bit of a worry though - didnt have it until a couple of months ago.
This forum is a life saver and I felt very re-assured when I read the replies to my posting.
Will keep you posted.
Again, thank you so much
jennifer