My surgery is scheduled for next Friday, Jun 9th.

[shambles]

I will have a aortic valve replacement along with the removal of a tumor that is sitting right above the aorta. Ugh!! I have all sorts of emotions going on right now, one of them being anger....... why now... this is my favorite time of year. Im off each summer with my girls. I know that's not a good reason but its the only one I have at the moment. dkjflkfkdfkdf

For those of you with mechanical valves,,, are they audible? Can you hear them when laying down to sleep?

Im not getting a second opionion due to the fact that there is a tumor involved.. is that wrong? Should I be getting one? My surgeon said he did about 50 valve replacements a year? Is that enough? Should that concern me? Well--- actually it does... Im so confused....

On the other hand.. Im glad I'm getting it over with.

Dang,, my emotions are all over the place. Sorry for rambling.

 

[marky]

Shambles..
Ask away..there is lots of wisdom on this board

As for surgery.. I am glad that you have a date..that helps to solidify things in your mind.
I know it sucks having surgery this time of year.. I wait 9months for summer to come and I am spending it recovering. .not swimming/biking/hiking .. beaching it..all the things that I love about it..
But.. OTOH.. I am alive and hopefully for many more summers!
and it is a good time for surgery..b/c there is less risk of catching colds/flu etc..which would be awful after OHS.

As for the tumor? I have no idea..do they know what type of tumor? has it attached to major arteries or organs? there would be a lot of questions I would want answered about the tumor..

I don't know what is the magical number of surgeries.. My surgeon does about 150 mitral valve repairs per year.. I was happy with that.. others want someone who does many more..
I think the key is that YOU are confident with your surgeon.

Stick around here..and keep asking questions.. you will surely get good advice and input..
praying for your surgery next Friday..
that will be 5weeks to the day post op for me.

 

[Phyllis]

Emotions all over the place are normal. I put you on the calendar for the 9th and I hope in the ensuing time you can get more answers to all your questions. Ask away- that's what we're here for and we wish you the best.

 

[PJmomrunner]

Hi Shambles:

If I remember correctly, your tumor is the culprit responsible for clots that have caused you multiple (3?) heart attacks, right, so that makes me think the tumor is inside the aorta above the valve. Is that correct?

I think a second opinion is in order with any major surgery. If 50 a year concerns you, then it's doubley important. It would seem to me that since it's quite possible whoever operates has never seen such a tumor, it would be even more desirable that he/she be highly experienced in AVR's. I am not, BTW, making a judgment about whether 50 a year is a lot. I have spoken to a cardiologist who told me to make sure my surgeon has done at least 15 and I have spoken to a surgeon who has done 300 a year for the past ten years...I'm not sure how to judge what is a lot.

Also, in the spirit of "misery loves company," I have a tumor between my aortic arch and my spine at T4.

 

[greg]

Shambles,

I don't know what to say about the tumor. That would scare me.

As for the surgeon, find one you trust and go for it. I think they usually come as a team, so there is crossover expierence.

I know my emotions were a total wreck before and after surgery. That is part of the price we get to pay..... It's worth it.

Yes you can hear the mechanical valve (at least the St. Judes). Some times if I am having a rather restless night I have to move the pillow to the very top of my head. The clicking noise is worse coming thru the ear. It's worse on the left side than the right. My wife can hear it if she thinks about it. My grand daughter hears it even with the car radio on. All this sounds bad, but in reality, you just forget about it. It becomes part of life. Heck, it makes it easy to check your pulse.....just listen. Mostly at night it is about the same as having a wind-up watch on and hearing the second hand tick thru a pillow. You can hear it but just isn't an issue. It is just white noise for good sleeping.

Hang in there. Get the job done and get back to us.

 

[OldManEmu]

Risks

Risks

Shambles I would personally be happy with a surgeon that does 50 valve replacements a year. How many surgeons are well versed at doing valve replacements and tumour removal? If you did 50 complex procedures a year (once a week) would you feel confident that you could perform that task reliably. From reading a number of surgeon?s accounts it appears that the first 20 or so patients that a surgeon performs a new procedure on are those most at risk. After this if the surgeon is performing the operation regularly the risk reverts to the average for that procedure.

 

[Der Biermeister]

Shambles

I was upset for having to give up my SPRING - could care less about the summer. It usually is too blasted hot in Virginia anyway.

I was really looking forward to this Spring for racing my sailboat and riding my GoldWing. Then my world kind of caved in mid-March with operation in mid-April.

Now (now that spring is over! ) I am just about ready to resume all these things. In fact, I am trying to convince my wife that it's ok for me to ride tomorrow (almost 8 weeks post-op). I don't think I am going to win this debate.

 

[OldManEmu]

Der Biermeister riding

Der Biermeister riding

Der Biermeister my surgery was early 11/2004 and I went for the first ride on my motor cycle 25/12/2004 it was my Christmas present to my self and reminded me that I had returned to normal? (what is normal) And was the reason I had surgery. Unless you have other problems you should be able to ride at 8 weeks. It took me another month or so until I had the concentration to ride for more that 30 minutes without a break.

 

[LadyBlue]

Best thoughts and wishes !! We will be thinking of you!

 

[joanne6]

Thinking of you

Thinking of you

It was really hot when I had my surgery last August. My kids had told me to take a small fan to the hospital with me. I didn't do it and they had to come home and bring it back to ICU. I would not have made it through the 5 days in the hospital without my fan.
That being said, I was told to find a surgeon who does primarily valve surgery. Bypass is very differnt surgery. I had the same surgeon as Marky and I will defer to her that he does 150/yr. The team is also very important. I had major problems during surgery when my airway closed shut and I needed an emergency tracheotomy. There were many skilled docs around who tried to intubate but were unable. My surgeon finally decided I had to have the trach or goodbye to me.
It is very scarey to think about having OHS but the day of the surgery you will most likely be very calm. You know it had to be done and the outcomes are almost always very good.
We will be thinking of you and praying for you.

 

[geebee]

Shambles,
It is difficult to know how many valve replacements are enough to make a surgeon good. So many people think the more the better but I want someone I know is good, careful and knows each patient well. My last surgery was done by a very well respected cardiac surgeon who is know for tough cases. He had about the same experience as yours in yearly valve replacements but had much experience in performing tough case scenarios. That is what I wanted and he is also the type of surgeon who spends time discussing things. The first time I met him we talked for almost 2 hours. He even cancelled a meeting to continue our discussions and answer all my questions.
If you feel your surgeon knows what he is doing, has a good reputation and patient survival history, and you trust him, that should be foremost on your list.
I always think of second opinions as being for questionable surgeries. It sounds like yours is not - the tumor makes it necessary. You can go through a second opinion visit if you feel it will help your peace of mind but otherwise I think you will be fine.
You can hear mechanical valves but they diminish with time. I hear mine only very occasionally at this point.
Take care and peace to you.

 

[Georgia]

I'm glad you got your date. Now you can make plans. I think summer would be a pretty good time for surgery because you can get out to walk (which is the most important activity during recovery).

I have a St. Jude's - I can only hear it in the bathroom (echo chamber), and then only when my mouth is open. There are a very few people who are bothered by it after the first few months (it's more audible when you first get it). Hearing it occasionally is reassuring to me.

I hope you use the next week to entertain yourself - go shopping, be sure you get a recliner that fits you for your recovery, go to a day spa, see a movie, organize or write your bills (you do NOT want to use your checkbook shortly after surgery - let it alone for a couple of weeks. This is from personal [bad] experience); update your will if needed; draft a living will/durable power of attorney; buy and write any birthday cards you might need to send for about a month after surgery - have them ready to mail; get some comfy lounge clothes (very smooth, soft material for your incision - I always wore silk for a while). Go out to eat and have a few drinks. Pile a couple of month's entertainment into the next week.

It sounds to me that your ohs will improve your life even more than it has most of us. At least the source of the heart attacks should be removed. And that's such a wonderful thing.

Have a good week. And please arrange for someone to post updates on your surgery for us - we worry a lot.

 

[dj/utvolsfan]

Shambles,
You have every right to have your emotions all over the place. Don't apologize for it! I know I can emphasize with you. Goodness you have really been through the ringer! And I really do think it adds so much more to the impact of ohs when you have your daughters at home. Not only are you worried about yourself but you worry about your babies too!
I wish I could hug you Shambles!!!!!! What I would like to say to you is that you have been through so much and that if it were me I would be rejoicing in the fact that it is just about over! You're just about to get your life back!! Sure, there is a huge mountain in front of you, but you're going to climb it step by step and get over to the other side with a little help from the man upstairs, your very skilled surgeon and his team, your family and friends and all of us here at vr.com.
God Bless You!
Debbi

 

[Andrew'sMom]

I will be thinking about you & praying for you on Friday. Wishing you the very best.

 

[Kristy]

A busy week

A busy week

Must be a good week to have OHS because it sure seems like there are a lot of them! Sending you prayers for a successful surgery and complete recovery on Friday. Will be looking for an update.

Kristy

 

[Elise Lucas]

Hello

Hello

Oh Shambles... I too went through what you are going through now and I will be thinking of you and saying a prayer for you. I had my aortic valve replaced three and half years ago and all was fine. I posted a thread mentioning my recovery and the use of what we call a v pillow down under it is simply a pillow in the shape of a V and I propped a normal pillow behind it. It was great to sleep with and was a great support behind my back... I took it into hospital with me...this is just a little thing but helped so much. As for the valve ticking like a clock I don't hear it only sometimes in bed. I feel more of a thumping which is fine also... I spoke to my patient educator at the hospital about it as it did start to worry me at the time and the words she said were "look upon it as comforting dear"..... this helped me so much ... I went well after the op although of course there was pain etc but I was walking up a flight of stairs on the third day with a physio and made sure I did what I was told re exercise etc...ie had to start sitting out in a chair which in itself was tiring...then every few hours a walk around the wards... home on the sixth day and had a friend stay for a couple of nights then on my own with help when I needed it ie getting the wretched white stockings on and off which are worn to help prevent clots... when I went home I tried to walk (with a friend) every day... first of all just a tiny walk then longer...the first time on my own I walked to the shops I had to sit down four times on fences along the way... of course you must be guided by your health professionals... I also went to the hospital once a week for exercise classes..of course I didn't drive for six weeks due to the sternum.... I have a St Jude's valve .... now I can swim and walk long distances and go to exercise classes twice a week...keep the weight down...BUT def indulge in treats sometimes ... I have written a book called 'From the Heart' ...if you are interested you can check it out ..just type in Zeus Publishing and go to the non-fiction area... I wrote it under the name Elise McCune... The Heart Foundation of Australia (WA) launched it a few weeks ago... not all about heart disease though!!!!! I know consider myself to have the same life span as a person who was not born with a congenital heart disease... all the very best and I know a lady who plays tennis (in her seventies) twice a week and has had a valv e for 20 years... I tend to think they last for a long long time... love to you and thinking of you Elise

 

[Philip]

My aortic valve is very audible to me in quite environments and some that are not so quite. I was afraid this would be annoying but was pleasantly surprised to find that this is comforting. I click myself to sleep each evening. I find it disturbing when I CAN'T hear the valve. The neighbors are complaining a bit about the noise....kidding. Other than my wife only one other person has noticed, a PA who was specifically listening for it. My wife says I remind her of Captain Hook's crocodile that swallowed the clock. There are many important issues surrounding valve selection but from my perspective valve noise is not an issue.
Philip

 

[catwoman]

Shambles:

Good luck on your surgery. I had mine 3 years ago, two weeks later than your date. Texas gets pretty hot in the summer, so I walked late in the evening, when it got "cooler," well, as "cool" as Texas can get on summer evenings.
I had been told my surgeon would try to do a repair. When I woke up in recovery and heard the ticking, I knewI had a St. Jude instead of a repair. My family could hear it while I was in the hospital. For several months post-op, I could hear it pretty audibly.
However, I seldom hear it now -- usually only when I'm in our tiled bathroom. Don't remember if I even hear it while going to sleep or upon waking up.

 

[Cooker]

Thoughts and prayers your way.

Tom

 

[Superbob]

Shambles,

I'm betting you do so well that afterwards you will have to change your screen name to something like Assembled or Serene. As for the clicking noise keeping you awake, I don't have a mechanical valve, but I bet at the loudest it's no worse than the ringing in the ears I have. I have successfully masked that at bedtime with a Sharper Image sound machine that will play a variety of soothing sounds or a favorite radio station. So I wouldn't worry about that.

Best thoughts and prayers are going your way.

Rob