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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

VERY surprising 6 week post-op visit with Cardiology today

I am so shocked. Pre-operatvely, I was too that I would be off work anywhere from 2-3 months, depending on how I heal. I am following all of the recommendations from the hospital regarding activity--maybe pushing it a bit. I am walking about an hour each day.

I am still having pain, though. It is controlled with Ibuprofen twice a day. I was so encouraged that I was not taking much pain medicine! I do not feel like I could return to work as I am unable to do a lot with my arms and straining the chest area still gives my quite a bit of pain.

So, the Dr today says he is SHOCKED that I am not back at work. He says I can drive, jog, whatever I want to do. I can raise my arms, shake them around, anything I feel like doing, I have the green light. I said, well, there's no way I can work, I am still is quite a bit of pain. In fact I kept repositioning myself in the dr.'s office because when I sit in one position it gets uncomfortable.

He said most of his patients are back to work in 4 weeks, maybe with light duty. I said well, at 4 weeks I was still taking narcotics to deal with the pain, so that would NOT have happened.

He is not the surgeon who operated on me. So, for follow-up, I am going to compose a letter for him and for the surgeon stating: 1) What I was told pre-op, 2) What I was told upon discharge, and 3) What I was told today. Three very different stories.

I am aggravated and frustrated. I am not a big baby, but that's just how he made me feel. My pain is real and I though I am very motivated to go back to work, I am not feeling strong enough to do so. He supported me in this. He also referred me to the Pain Clinic (for which I said I don't think I need it, I just take my Ibuprofen. I need TIME, not drugs).

How long did it take others to go back to work?

Geri

Hi Geri,
You know your body better than anyone else. Your earlier post addressed walking and not using narcotics but difficulty sleeping. Everyone reacts and responds differently to surgery. Open heart surgery is hard on the body even with an already ASD present. Ibuprofen does not constitute a pain management regime. Those MDs may suggest ideas but their goal is to handle narcotics. Please don’t feel “bad” about your cardiologists’ comparisons to other patients. That is his analogy, not yours. We all respond differently to major surgery. You must progress at your own speed and LISTEN to your own body. Doctors have a specific point of view and sorry, not all patients follow that pattern. I have seen many surgery patients return to work and at a latter date will admit that they should have stayed off longer but were following the doctors advice. It is to the doctors credit if they can get patients to return sooner than latter.
I have never had open heart surgery but had an ASD repair done. So I really can’t tell you how you should feel. I have had major surgery and was slow to recoup. I have seen patients take forever and some needing minimal recuperation time. Don’t let different post op beliefs get to you. As you can see yourself, three differnt stories were told to you.
Don’t feel bad that healing is going at it’s own pace. You sound very honest about your health and told the doctor the truth. Most of us go in and say “yes, fine , no problems” and then walk out upset that issues weren’t addressed.
Just the walking you do amazes me! Take the time you need to return to a healthy status. You know how you are progressing. Take care, Linda

Linda,

Thanks for your heartfelt reply. I will certainly heed your advice and continue to listen to my body to determine what activities I should be doing. I think I need more time, not more drugs, to recover and return to work.

My surgeon was so amazing and did a great job with my procedure. I think, though, the practice needs to look more closely at the adult congenital population and make appropriate recommendations for post-op recovery and activity.

Geri


Linda Arsenault Pitzo said:

Hi Geri,
You know your body better than anyone else. Your earlier post addressed walking and not using narcotics but difficulty sleeping. Everyone reacts and responds differently to surgery. Open heart surgery is hard on the body even with an already ASD present. Ibuprofen does not constitute a pain management regime. Those MDs may suggest ideas but their goal is to handle narcotics. Please don't feel "bad" about your cardiologists' comparisons to other patients. That is his analogy, not yours. We all respond differently to major surgery. You must progress at your own speed and LISTEN to your own body. Doctors have a specific point of view and sorry, not all patients follow that pattern. I have seen many surgery patients return to work and at a latter date will admit that they should have stayed off longer but were following the doctors advice. It is to the doctors credit if they can get patients to return sooner than latter.
I have never had open heart surgery but had an ASD repair done. So I really can't tell you how you should feel. I have had major surgery and was slow to recoup. I have seen patients take forever and some needing minimal recuperation time. Don't let different post op beliefs get to you. As you can see yourself, three differnt stories were told to you.
Don't feel bad that healing is going at it's own pace. You sound very honest about your health and told the doctor the truth. Most of us go in and say "yes, fine , no problems" and then walk out upset that issues weren't addressed.
Just the walking you do amazes me! Take the time you need to return to a healthy status. You know how you are progressing. Take care, Linda

Anton,

I agree-Linda was spot on with her advice. I have heard other stories about patients returning to work too soon and suffering because of it. My mom had this happen and is still regretful as she feels her recovery was never complete.

Thanks for your response,

Geri

Anton said:

Hi GFSCCLS

You won't get better advice than Linda's, no matter how many fancily framed qualifications your advisor has hanging on his or her wall. I took six months to recover from OHS for ASD, admittedly at a time when the procedure was in its infancy and techniques crude by comparison with today's. On the surgeon's advice, I went back to work several days after my more recent percutaneous closure. It was one of the more stupid decisions I have made in my lifetime. I wish I had heeded the signals from both body and mind - or had read a post such as Linda's - at that time.

Anton

Hi Geri,
Thanks for your response. Yes, MDs need to learn and look more closely at the adults with congenital heart disease. Compensating should be any illnesses middle name! We live longer and survive! But follow up care for any congenital defect should continue for life. There is little data out there on adults who now get repaired and continue on. You must always listen to your body and follow its lead. I call us ZEBRAS! When you hear hoofbeats behind you and turn, you expect horses. But it can also be zebras and that is what we are. So I have a few stripes! Well, maybe a lot of stripes! If I haven’t already said it, take each day slowly as you enjoy your progression. Don’t let ANYONE intimidate or bully you to do more than you feel you can do!
Take care, Linda