My Date is Set!

[Diane]

Just a few short months ago, I believed that I was "fixed" and life was good......I had never even given a thought to ever having heart surgery again.

Then, I had to go and open this huge "can of worms" by reminding my PCP that I was overdue for an echo (what an idiot....I should have just kept my BIG MOUTH shut!!). Since that echo, I have spent the better part of 6 months driving back and forth to Stanford every 2 - 3 weeks for what seems like practically every test known to the medical profession and talking to the doctors. Since the first day that the "S" word came out of the dr's mouth, I have been just freaking out!

But the decision has finally been made......I am going to have PVR surgery. YIKES!!! I looked at my calendar for a "convenient" time (is there a "convenient" time to have OHS?). I called the surgeon's office yesterday and (gulp!) they scheduled the PVR for Feb. 25, 2005.

I keep hoping that this is some extended NIGHTMARE and I will wake up!! I have been told that this is a relatively safe procedure with a very low mortality rate and that I have a great surgeon but that doesn't seem to make it any easier. The drs tell me that the surgery will make me feel so much better (and here I thought I was feeling fine.....what do I know!).

I have learned a lot in the last few months and all of you have helped me to realize and understand that what I am going through is normal.
Diane

 

[Ross]

Oh so your going to be my birthday present next year. Congratulations!

It's never easy dealing with the thoughts and feelings when about to go through with it. I don't care how many times you've done it, the feelings are the same.

You'll do well, you have too. It'll be my birthday after all.

 

[tobagotwo]

You should have scheduled it for February 29th...

You're right. It's absolutely normal to feel that way. It will take a while to settle down. And there is also a great deal of agreement that the PVR is a less damgerous operation, and a quicker recovery in some aspects.

Small comfort for you, though. It's still OHS, and it's still scary as hell if it's you who has to go through it. What was your previous surgery? (just nosey - you don't have to answer...)

Best wishes,

 

[Diane]

Bob,
You have a great idea.....Feb. 29th does sound like a better date. I think I will call them back and reschedule!

As for my other surgery, I had a repair of Tetrology of Fallot in 1959 at 22 months old and then a follow-up cath in 1963. Since then, I have been considered "fixed". I have not even had a cardio since childhood and I do not take any heart meds. I have been to a couple of different cardios for consults a few times is all. Before all of this started, I had seen the local cardio here once for a consult and that was back in 1996.

So, as you can imagine, I was SHOCKED when I was told that I needed PVR surgery. I never even knew that this was a possibility. When I told my PCP that, he said that given my history, it was inevitable. In a way, I wish I had known that it was inevitable, then at least I would have been more prepared and not been so shocked. But, then again, sometimes ignorance is bliss.....up until now, I have been able to live my life without giving it a 2nd thought. I guess that has been worth something too.

I know now that I will get through it (I have to.....it is scheduled on Ross' birthday!). All of your stories and support have really helped me to realize that I am not alone and that I CAN do this.

Diane

 

[tobagotwo]

Oohh...

Nothing worse than the fix that isn't really a fix but they don't tell you it isn't a fix until you find out it's not a fix and then it's too late...

Five points to anyone who can tell me where the commas go in that sentence. Points are redeemable later for *absolutely nothing*.

I don't know why they do that. Sure, it's great to let a patient walk out the door with a big smile, thanking them for fixing their problem, not a care in the world. But don't they think you'll be disappointed later? That someday you'll find out they led to you down the garden path? Human denial is an amazing thing.

I know that for a while after I found out, I would startle awake up in the middle of the night, ready for flight or fight, but not knowing why. As I woke up more, I would realize what I must have been reacting to, and the terror would rapidly fade away. I never told my wife about it, because there was nothing she could have done. I did get past that, though. And I went on to get a biological valve, even though I knew it means another operation later.

Don't let this put a damper on any festivities you have planned over the next two weeks. You've put it out of your mind for twenty years before, so let the holidays roll. Enjoy the family, friends, and holidays.

Then do something special you enjoy or always wanted to do. And go somewhere that you find beautiful.

Best wishes,

 

[dawnwit15]

Hi Diane

Hi Diane

Diane:
I have to admit I do not envy the pre-surgery state that you are in. I've been there and I know how taxing it is on your nerves and mental health. If it makes you feel any better, alot of us here thought we were "fixed" and had to go through surgery again in a brief period of time. I had a valvuloplasty done which was suppose to give fixture to my mitral valve and I wasn't suppose to see a surgery table again for another 10 years. As luck would have it, 6 months after that surgery, my mitral valve was closing again and I was back in congestive heart failure. I felt the same anguish you do now. I was angry at my doctors, I was sad, depressed and went through the whole "why me" syndrome. It will be one year on Jan. 13th since my last surgery, OHS. As for you wondering if you would be better off had you known you may have had to face surgery sometime in life, I think you were probably better off not knowing until now. The reason why I say this is because, my surgeons believe I will need another OHS in 10-20 years, knowing this only makes me worry about the future.
Rest assured, the anxiety pre-OHS is worse than the surgery itself. You will be in the best care during your hospital stay. I will pray for your strength. Keep your head up and know your not alone.
Best wishes,
Dawn