A single question

[pem]

I understand that one does due diligence, prepares as best as one can despite time limitations, emotional and physical limitations, and other circumstances. I also understand that one enters into valve-replacement surgery ideally with a mindset of pushing forward with no regrets. With this understanding in place, I can imagine that in retrospect there is always something learned from the experience. As a VRS candidate, I would be very interested to know of those who have already experienced OHS, if there is one thing you would have done differently, what would it be?

A related question (okay, so I'm really asking two questions), if there is one thing you would like to have known before surgery that you found out after, what would it be?

I realize these are very open-ended questions so I appreciate all character of responses. Thank you very sincerely.

 

[Lynlw]

I'm not sure if this is the kind of things you are asking but , but did you check out this thread in the post op forum http://www.valvereplacement.org/for...-things-that-you-found-out-that-surprised-you

 

[Duffey]

I would have spent much less time anticipating surgery and more time enjoying life.

 

[pem]

I'm not sure if this is the kind of things you are asking but , but did you check out this thread in the post op forum http://www.valvereplacement.org/for...-things-that-you-found-out-that-surprised-you

Thanks - this is exactly along the lines of what I'm asking. Those posts are a bit daunting when you are looking forward rather than backward, but I think it helps one avoid unpleasant surprises. I get the sense that each experience is unique - there's no such think as a textbook AVR.

Thanks again.

 

[pem]

I would have spent much less time anticipating surgery and more time enjoying life.

Sounds like a great idea, but maybe easier said than done for some. Any tips for how to do that?

 

[williamsm18]

for me as with most changing any decisions to have ohs would of got me a nice new pine box my aorta was ready to explode and a bad heart heart valve left me few options. however with the help of this site and good people like neil brewer, cooker,greg and many others they helped in making some decisions alot easier.

mark
ascending aorta and aortic valve replacement
jan/2011

 

[normofthenorth]

I've wondered a few times whether or not I wish I'd had the AVR sooner. OT1H I might have skipped the MV repair (and the 3 months of ACT), but OTOH I would have gone in with zero symptoms, which I think would have kind of pi$$ed me off, or been a challenge psychologically. At 4 months post-op, I finally feel significantly fitter than I did on the morning when I checked in for the OHS (which was still pretty fit). Having to wait 6 or 9 or 12 months or longer (or forever) to feel as fit as I did pre-op sounds like a bummer, no matter what the tests showed. So on balance, I have no regrets on that score.

One little one, which I mentioned in the linked thread, too: I regret that my sweetie and I never practiced "Medical Charades" before my OHS, so we'd have a chance of communicating while I had the breathing tube down my throat. In hindsight, nothing I "needed" to communicate then was even 1% as important as it seemed, but it was frustrating that we were so incompetent at it.

 

[Greg a]

Sounds like a great idea, but maybe easier said than done for some. Any tips for how to do that?

 

[Jkm7]

Two OHS in four years and I can't say there is much of anything I would do differently today.

One thing that is not mentioned here often but I found useful was to speak up.
If you want or need something that is not offered, ask.
If something is happening about which you have questions, ask.
When they wheeled me in the OR, some of the anesthesiology team started 'working on me' and I spoke up and said, "Do I really have to watch this?" The answer was an immediate "No, you don't" and that is the last I remember. It wasn't a big deal to watch them put in more IV's etc but why be subjected to it knowing they already had a line in place they could use to medicate me, I'm going to sleep real soon anyway....... I was so happy I spoke up.

 

[drivetopless]

I would have asked permission to have my photo taken immediately post op- while the tubes were all in.
I did not sign a hospital release beforehand (didn't know I had to), so no pics were allowed in ICU.
I blogged/documented/photographed the process, but there are no pictures from this early time.

 

[Lynlw]

I would have asked permission to have my photo taken immediately post op- while the tubes were all in.
I did not sign a hospital release beforehand (didn't know I had to), so no pics were allowed in ICU.
I blogged/documented/photographed the process, but there are no pictures from this early time.

Wow, I never heard of that before. I know many hospitals will have to get the patient to sign a release if the hospital wants to take their picture to use publicaly, but I never heard of there being rules for family to take pictures. Altho thinking back I never asked I just took pictures.
But that is a good thing to know so other people can find out before surgery if their hospital has rules about it.

 

[Eva]

Sounds like a great idea, but maybe easier said than done for some. Any tips for how to do that?

I, too, regretted how much time I spent in worrying unnecessarily. I only felt relaxed just before the surgery after I spoke to too many people who had this surgery and reassured me how better they felt. All this was just before I found this wonderful website. So, here we are and take it from us and re-assure yourself that you shall be fine...this kind of surgery has become a kind of a routine these days!!

As for your other questions:

(1) If you are going mechanical, ask your surgeon which model he will use, why, and what is the expiration date of that particular valve. I wish I knew the different mechanical valves models and varieties before the surgery and to have picked them myself!
(2) I wish I had my surgery video-taped!
(3) Avoid Monday or Friday as surgery day.
(4) Never feel shy to ask him any questions...you are his employer!!
(5) I very much regret not having allowed my sister or hubby to stay nearby the first 2 nights after surgery!

Good luck.

 

[WandaW]

I wish I had not spent so much time worrying during the couple weeks I had to prepare for surgery. I had to push myself so hard to get things tied up at work and at home. I am a new widow and had to stay CALM for my 2 teens and 86 year old mother. But truly, everyone knows what they are doing. Once I arrived at the hospital they started taking great care of me, explaining what they were doing and why. Coming out with all the tubes was not as uncomfortable as I thought it would be, I had my breathing tube removed sometime during the first night and ice chips never tasted so good. The best moment was seeing my family and giving them a thumbs up that I was okay. Ask about scheduled Pain control, I had to ask for it the first day until I really complained. I am a rehab therapist and my patients need pain control to get better and get moving and so did I! They do this everyday you will be amazed at how good you feel after such an involved surgery. Good luck and peace, it really is a miracle that they can fix these problems of ours and we can get back to our lives.

 

[Ruth]

I would have packed much less "stuff" in my hospital bag as I used almost none of it. Other than my own toothbrush, the only thing I really needed/enjoyed having was my own extra-soft bathrobe (I used it as both a robe and a spare blanket).

I wish I had known that it could take me months to recover, not weeks, and that now 4+ years later none of that extra recovery time would matter in the least as I feel great. I would have enjoyed my slow and bumpy recovery more knowing it would all end well.

 

[jklump]

I too would not have thought and worried about the surgery as much as I did.It will be easier than you expect.
I am the kind of person that has to research everthing thoroughly... and then tell everyone about it, both good and bad. NOT A GOOD IDEA!
I also would not have talked excessively about it to my wife. I put enormous amount of stress on her before the surgery. I am 7 wks post op and she is not totaly over it yet.
Best wishes for a bump free experience!
John

 

[Freddie]

On the flip side on having OHS...there's not much I would have done differently prior to surgery (I was put on the waiting list on a Monday, pre-op that Thursday with surgery the following day), so without knowing I didn't have much time to do anything.

But there IS one thing I would have liked to have known after surgery and that is, who were my true friends and family members.