Just found out I am going into surgery ASAP

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alex c.

First, I want to thank everyone for this forum. I hope I can get help, advice and support from the members. I met my cardiologist and today and the heart murmur I had since 15 (I'm now 31) are now 2 leaky valves. I was told today one valve is "severely leaking" and the other is "moderate". I'm scheduled to meet the surgeon Oct. 26th and they will tell me my surgery date then. I was expecting to have minimally invasive surgery, but today was told it will be open- chest. I was crushed at the moment. It's been 7 hours and I am trying to get over that fact. I have been doing research since I got home. Now, I'm trying to find out any info I can to make all the decisions I need to make. The more I read, the more nervous and afraid I get. I'm sure I will have a ton of questions. I had a lot tossed in my lap today. Thanks for listening.
 
Hi there Alex!!

Firstly, welcome to the forum - you've certainly come to the right place to get answers to your questions!! All the best with your appointment with the surgeon and finding out your surgery date. Are they going to operate on one valve or two??
 
Hi Alex,

It is alot tossed into your lap, don't make yourself sick by researching too much!! If you are happy with your surgeon then you've got to trust their instincts! My thoughts are with you :)

Lynn
 
Welcome Alex. You feel just like everyone else does when they first get the news. Take a deep breath and start reading as much as you can before you go to the surgeon. You will probably want to start with the thread on valve selection and then move on to pre-surgery. It's a lot to take in, but you will find a wonderful supportive community here and will be better informed when you do meet the surgeon. Best Wishes to you,
Phyllis
 
Welcome Alex:)
You found the right place!! you can ask away .. you will get very informed answers..there is a lot of experience, wisdom and support here!!

You already got some great advice from Phyllis, so get busy reading!
Keep us posted on your surgeon visit and date!
Hang in there..
 
Hi Alex...and WELCOME...
you will do just fine once you get over the initial shock of it...we all went through pretty much the same shock...

There is always someone on here ready to offer a shoulder to cry on or a friendly word of advice so go ahead and ask us anything you cant find the answer to.
 
Welcome Alex,

If you weren't scared and nervous, you wouldn't be human - perfectly normal and you are in very good company now.

Sit back, breathe deeply and ask any and all questions as there are sure to be answers here for you.
 
Welcome Alex! We're so glad you found us! You will find a lot of information here, and more importantly, a lot of support. Read, ask questions, vent - we're here for you and you're going to do just fine.
 
Just remember, EVERYONE on this site represents a Valve Replacement SURVIVOR or the family member of a survivor. You are NOT ALONE in this journey.

Another statistic you will be glad to hear, first time surgeries for patients under age 60 are 98% successful (with a 1% chance of stroke and 1% chance of death). To put that into perspective, the chance of DEATH if you do NOT get your defective valve(s) replaced is 100% in (not very much) time.

Pull up a comfortable chair and read as much as you find relevant in the Pre-Surgery, Post Surgery, and Valve Selection Forums. It's a LOT of reading, but should give you a good feel for how the rest of us got through our surgeries. Keep reminding yourself, if we can do it, SO CAN YOU !

Feel free to ask any questions that come to mind. Someone on this site will most likely know the answer or be able to relate their own experience.

'AL Capshaw'
 
Hello and welcome! You've come to the right place!!

You're going to have to swallow that nervousness and fear, though, and understand that the more you read the better off you will feel going into this whole thing. Honest. Knowledge is power.

If you are a statistics and numbers and research person, there are all kinds of papers and studies we can refer you to.

If you are someone who just needs life stories to help guide you, there are plenty of those here, too!

Start a new thread with each particular question. That way, more people will see it and respond to you.

Getting your sternum cut open is not that awful. Sure, it is uncomfortable, and you will have to honor the time it takes to heal so that you have no problems. But the drugs are great, the procedures are pretty much tried and true and the scars are very clean and something you get used to quite easily when you realize you are out there living and breathing.

So, please feel free to ask us anything and I hope you will find that this is something to be grateful for, not something to be fearful of. Modern medicine is phenomenal. You will undoubtedly be able to live the full and glorious life that you had anticipated.

Hang in there!!

:) Marguerite
 
Marguerite's right. It's not so bad having your chest cut open. It sounds a lot worse than it is.

It also gives your surgeon a lot more room to work, and that can be a benefit to your outcome.

Of course you're downright scared and talking to yourself in the middle of the night. You would be an incomplete human if you weren't. We all wavered between normal/rational and having a tiny person in our brains screaming in terror.

The reality, though, is not nearly as bad as our imaginary previews. You will feel so much better after the surgery, you'll amost resent that you couldn't have had it sooner.

Best wishes,
 
Hi Alex,

I just read your message and wanted to say hello and wish you luck. I went through life with a heart murmur too, and just last year had surgery to correct it. So far I?m on my third open-heart surgery, and I do have to say it?s not as bad as it sounds. Of course I had the first two when I was much younger so I don?t remember them, but this last one I was so scared that I didn?t think I was going to be able to go through with it. But since my heart wasn?t really giving me any more options, I got it done and over with and now I feel so much better. Just try and stay positive (which I know sounds ridiculous at the moment) but if I can get through it, I know anyone else can too. Good luck to you and keep us all posted on how your doing. If you have any thoughts or questions, don?t be afraid to share:) .

Sara
 
Thank you all very much for your support! :) It makes me feel TONS better to know and understand that everyone here has been through the same thing. I will read the info as suggested and if and when I have question, I will ask away. Oh! and btw, yes, I am having 2 valves replaced. Thanks again.

Alex
 
Alex, welcome to the "you're going to do WHAT to me? I think I don't want to do this" club.

Truly, the incision is NOT a problem. It looks awful at first, and sounds horrid, but the consensus of opinion is that abdominal surgery is much more painful. The difference is in the length of time for recovery.

Your heart itself doesn't hurt after surgery. How weird is that? Your chest will hurt, but as said before, they aren't stingy with pain meds. They want you up and walking in a day, and breathing well, so they manage your pain very well.

After surgery you'll be weak as a kitten for much longer than you can imagine. Naptime is mostly any time. If you just go with the flow and accept that you'll be down for many weeks, and do what exercising is recommended, you'll be OK.

Strangely, the type of incision appears to have little impact on how long it takes to recover, unless you need to lift things a lot. This surgery is a great insult to your body however they get into your heart, and your body demands a long time to heal. But it's not terribly painful - unless you cough or sneeze or hit your chest. Then the tears will fall. :eek:

I was terrified. My imagination and fears were far worse than the reality of the surgery and recuperation. The bloodwork was the worst and most stressful part of hospitalization. Go figure.

You're in good company. At your age I imagine you'll have a quicker recovery than most of us.

If you find you're terribly obsessed by this and can't sleep and worry all the time, please call your doc and get chemical help - I was on xanax prior to surgery and many of us found this was a great help. There isn't going to be anything in your life much more stressful than anticipating this surgery, so don't feel ashamed of asking for help. It's not good for your heart to be constantly worrying and losing sleep.

Hang in there - and ask away.
 
Hi, Alex--

I'm also 31, and had my surgery four months ago at age 30. I'd known since birth that my mitral valve was bad and would need to be replaced someday, so when I started having symptoms, I knew it was TIME. I know it sounds bad, but I was glad. For me, surgery came at the right time in my life when I was still healthy and active enough to get through it, get over the mountain, and put it behind me.

I'm sure, like the rest of us, there's that part of you that wishes you'd never have to go through heart surgery. But, in my opinion, now is the BEST time to do it. You're young and healthy, and you should get through this surgery just fine. You never said which two valves need to be replaced--which ones are they?

I know you are disappointed that you aren't a candidate for minimally invasive surgery, but I can tell you from experience that even with minimally invasive surgery, there are still risks and pain. It may not be the same as having your chest cracked open, but your body still goes through the same trauma. No matter which way you cut it (no pun intended!) heart surgey is heart surgery. I was a little concerned (read: freaked out) when I started having shortness of breath and lightheadedness again recently. But as I quickly learned, it's all part of the recovery process, and itcan take up to a year for your body to fully recover from the trauma it's endured.

Keep us posted as you approach your surgery date. There's a whole heck of a lot of us here who are pulling for you each step of the way!

Debi (debster913)
 
I am curious as to why you cannot have the minimal invasive surgery. I had my surgery (aortic valve replacment) in May, 2005. I had symptoms for 2 plus years but attributed it to my age, being on blood pressure medication etc. Long story short, I had to have the replacement. My dad had 3 open heart surgies and to say I was nervous is an understatement. I had an enormous fear of the "breathing tube" - I did not have much time to decide about surgery which probably was good. My thought process going into the surgery was that if others had done it , so could I. The surgery is routine ( but not for the patient!). I am now 12 plus months since surgery and have returned to being very active- work, tennis, home demands etc. I might not should suggest this, but if you can avoid the coumadin, I would do so. Alot depends on your age- tissue valves might need to be replace within 10 -15 years, but, who knows what progress could be made by that time. Do your reseach- ask questions and i wish you the best.
 
Alex
Just wanted to let you know my aortic and mitral St Judes mechanical valves are 21 years old. I have abused them terribly and they are still clicking away. Good luck on your research and upcoming surgery. Any questions just holler.
Kathleen
 
Welcome!!

Welcome!!

I cannot add more than others have said. I am 34 and only a couple of months into this idea of heart surgery. I will say that this forum has helped ease my fear more than anything else. Read and ask - lean on those that have gone before - they are surely here for you - and all of us!
Good luck!
 
Same as pipersmith. Have not been here long but am alot more at ease about things since I found this forum!! It is alot to have to take in but every thing you learn will ease your mind even more. Good Luck and ask away!
 
debster913 said:
....--which ones are they?

IThere's a whole heck of a lot of us here who are pulling for you each step of the way!

Debi (debster913)
Thanks for you support! ....you know, I don't even know which ones they are, he told me the day I met him but all I could think of was the surgery. My appt got bumped up to Tues. the 24th instead of Thurs, so I will ask him again.

The more I've been reading, I feel more comfortable with the actual surgery. It's the recovery time that has me thinking and the after-life. To be completely honest, It seems like although I will be healthy again, my lifestyle will not be the same anymore. :( I was an avid athletic, football, basketball, soccer, tennis, but my favorite sport was weightlifting. I got up to bench 320lbs, and squat 345 (I'm 5'10, 178lbs). It looks like I will never be able to do that again and maybe football neither. Does anyone know if I CAN still do both or either? I can handle the truth If I won't be able to, it's just pretty sad though.
 

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