New

[Babydoll]

Hi, am Stacey 33 and born with TOF. I found out two weeks ago the I have outgrown my valve(last surgery was when I was 7) so on Sept 8 I will be going back to Charleston MUSC in SC to have it replace am not so much worried about the surgery as the recovery after. I have flashbacks of my surgery when I was 7 and there was a fire in the ICU which caused me to stay on the vent an extra day. Am so worried that it will take them forever to take me off the vent and NG tube hate anything around my face. Also I know this sounds Childish but I have this charity event I go to every year, I haven't missed one in 7 years that will be happening 10 days postop and I am trying to make up my mind to sell the tickets or if maybe I'll feel good enough to attend the event. Any words of wisdom will help me make up my mind! I know that everyone is different but what if's keep popping up in my mind! HELP!

 

[atydev]

Sale

Sale

I am also 33 I just had my mitral and aortic valve replaced and a myectomy done on June 21st. No way will you be able to go. You will not have the strengh even if you did you will not feel up to it. In case you don't remember and I am sure it is not so fresh in your mind. You will feel as if you were hit by a truck backed up and run over again, from just above your waist to the tip of your head you will be so sore and you will be unable to use your arms. Certain movements even getting out of a car will be somewhat painful. You will be tired and the effects of the anesthesia will still be around. Please sale the tickets. Keep us posted

 

[mjd414]

Hi Stacey.......I am 2 weeks post op, and in my opinion you need to keep the ticket and plan on going to the event. I had root canal 3 days after being home from my AVR and the point to that is we do what we need to do and in your case, you should plan to do what you WANT to do.

I am convinced now more than ever before that the mind is a powerful part of our body and one that can do tremendous things. I think you should stay positive, plan to go 10 days post op and make that a goal. Be positive and you will be surprised what you will accomplish.......that's just my opinion!

Mark
Ft. Lauderdale

 

[atydev]

Mark

Mark

You are strong and I am not sure a root canal compares to going out and socializing. You are right the mind is an amazing thing. Believe me I am with you on that. It is true you can supress a lot of things even pain and do things that need to be done. Let me say at 10 days post op I had just gotten home from the hospital the day before and I would not have wanted to socialize with anyone. Of course it could be that I had a little more done I had a double valve replacement and a myectomy (removal of part of my heart) or maybe I am just not as strong as I thought I was.

 

[RayinSF]

Hi Stacey,

I am 35 yrs. old and 20 days post op. I must say I am feeling pretty good.I was out of the hospital in 7 days, and on day 10 I walked about 2 miles. I have just started going out w/ friends a bit, and am pretty wiped out by the time I get home, but it does feel good to get out. I would just play it by ear and see how you feel. Every person recovers at a differant rate. If your feeling ok after 10 days, I would try to get out, just remember not to over do it. If you do, your body is going to let you know! Hope this helps.
~Ray

 

[Ross]

Stacey things have changed so much over the years that I think you'll be surprised. You'll be kept sedated for most of the yucky stuff. The tube will be pulled just as soon as you can breath on your own. You may or may not remember it. As for the 10 days after, I'd think seriously about not going. It's possible to make it, but you'll be so worn out in such a short time, that I don't see how you could enjoy yourself. You'll just have to wait and see.

 

[chris]

hi Stacey
its up to you how you feel at the time when it comes,i didn't remember the tube in my throat at all when i had my aortic valve replaced,within 1hr of being home i was walking my dog across the fields it so overjoyed to see me and one wk later i covered 10mls in one day,its up to you how you feel at the time,all the best-chris

 

[Shine_on_Syd]

Stacey I had my tube out in 12 hours. I think thigs have change a lot since your operation, it is my understanding that most TOF babies have surgery as infants,
I pushed my recovery hard beacuse I felt so good and wanted to be a "he man". In retrospect it was a mistake to do things as fast as I did. It depends on the event, if you don't have to travel far and will be realtively still you should be okay. But I suggest if you have a long ride and it involves physical excertion cramped seating, etc. you need to be careful. You need to recover and I pushed mine.

 

[Karlynn]

You might be able to do the event 10 days post op. But all the warnings of not over-doing it are something to heed. Your one night event may lay you low for several days afterwards. Not to mention, if it will be a packed crowd, you could pick up some cold or flu bug and regret it. Your body will be more prone to contracting illness until it is allowed to strengthen again and anything you contract will take much longer to get rid of.

Personally, I wouldn't risk it

 

[ALCapshaw2]

Welcome to VR.com Stacey.

The first two weeks post-op can be 'difficult'. You shouldn't be in Pain, but you will have NO reserve. When your energy gives out, you will want to just lay down and rest. You may feel like you simply CANNOT move. It would NOT be good to have this happen while out and about.

At six weeks post op, you should be feeling much better and able to do much more, but even then, you will still tire easily. Many people return to non-physical work at six weeks, but most come home and collapse at the end of the day. You will continue to gain strength and stamina for at least six MONTHS. Some of us older patients and / or those who have had multiple surgeries notice improvement continuing for at least a YEAR to a year and a half.

10 days post op? I would not count on being up to an outing. Some are, but VERY FEW.

'AL'

 

[Babydoll]

Thanks

Thanks

Hi, just wanted to say thanks to everyone! I knew in my heart that I wouldn't be able to go to my event but was hoping that things had changed and I would be just wonderful and on top of the world lol I just needed more people to tell me this besides my family and the DR. I work for. As bad as I hate it am going to sell the tickets and on the bright side I can use that money for a new toy

 

[Debrinha GT]

how unfair!

how unfair!

Hello and welcome Stacy. I've been having heart surgeies since the age of ten and I must say it's not at all pleasant having to give up something nice because of it. In December 1995 I had tickets to go to Scotland with my husband to visit his family on January2nd, so you can imagine how excited I was about the big holiday. Well, I then decided to have an echo done to check the old valve and guess what?! There was no way I could go on a plane without having the surgery first which just wasn't fair! I had my third MVR(replacement) on December19th, spent Christmas in hospital and went home on the next day. I had some complications and had to go back for another two days and guess when? January 2nd, when I should have been on my way to Britain to have a good time instead! And here I am once again, getting ready to face yet my fourth surgery one of these days, only God knows when though. As for you, I too have memories of my previous surgeries but unfortunately, I just have to live with them and try not to let them get in the way when the time comes again. I doubt you'll feel up to going anywhere after ten days but again, everybody is different so, if you think it's worth it holding on to the ticket to see what happens, you can give it a try. I ended up having to hand back that ticket to Scotland which was one of the hardest things I've ever done in my life, and still lost money through it. Good luck with your decision!

Débora from Brazil

 

[Mary]

everything[/B] and take nothing for granted.
Mary

 

[Nancy]

WHAT WERE those nurses and respiratory therapists thinking about??? Why wouldn't they report something as important as being shocked while near a patient's bed??

I certainly wouldn't want someone that brain dead working on me or anyone else.

It's not so much that it happened, which is terrible enough, but that it went unreported and thus endangered patients and employees lives.

When my children were little, my daughter had to have a tonsillectomy, she was about 3 at the time. They gave her a nurse call button which had exposed wires coming out of it. I couldn't believe it. Here she was in a crib and could have easily put that into her mouth. It got changed out REAL fast! And you can bet that I was there as much as possible. How could I trust those caring for her after that?

Unfortunately we ALL have to watch every little thing that happens in the hospital and elsewhere in the medical care system.

Most of the time, things are OK. But it only takes one stupid mistake to cause a dangerous situation.

 

[Mary]

Nancy,
The field of medicine is just as subject to idiocy and incompetance as any other. Happily the field is populated with many, many professionals policing and making noise when they encounter situations that might otherwise go unreported.

I think we need to always remember that we "don't have to be the good patient". The fact that we are the patient is the only criteria worth noting. When we are afraid to make waves, then we are doing a diservice to all those coming after us.

Mary

 

[tobagotwo]

I think you'll feel up to it when you get up that morning.

However, I have to agree with those who pointed out you'll be worn out very quickly, will have no reserve energy, no place to put your feet up, may pay for the effort for several days, and might catch a cold/flu on top of it.

One possibility, though, if you're insistent. Ask your cardio to fill out the form for a temporary hadicapped mirror hanger for your car. Have someone escort you to the event in a wheelchair, so you can reserve your strength. It will still wear you out, though. Social interaction is very taxing.

Smart thing is still to give away the tickets.

Best wishes,

 

[medtronic of borg]

the truck

the truck

All I am going to say is read my history...I understand flashbacks except mine have finaly gone now. Relax it's true what you read medicine has come a long way in the last ten years! Remember how you felt when you woke up, kind of like a truck ran over you. The truck has been downsized to a minivan. For all of us old enough to remember those early days of ohs...oh boy...it was a semi back then. This will feel like a snap when wake up and get your head cleared up. So...my advise is relax. And enjoy the preop meds!

Med