Needing Surgery Soon

[iheart]

Hello to all!

I'm new to this forum. So very glad this resource is available. I'm going to have a lot of questions, so thanks in advance! I'll def. be posting a question on the valve selection forum soon.

So here's my story: I've just tuned 50yrs old, and my cardiologist is recommending surgery to repair my enlarged aorta (currently 5.2) and badly leaking bicuspid valve. Doctors first discovered a murmur and the leaking valve 10 years ago, and I've skated happily along not really all that concerned until late last year when I got the news about the aorta. But now I've been told by my cardio to "pull the trigger" on the surgery. In fact, he made that abundantly clear several times in our discussion yesterday.

I'm experiencing very little in the way of symptoms. I've stayed in decent shape and belong to a gym. I have 'maybe' the beginnings of shortness of breath but it's hard to tell. No swollen ankles. The stress of knowing what I have, and what's ahead have been working on me the last few days. Not to get too "sob storyish" here, but the last couple years have been very hard ones for my family. I lost my wife to brain cancer and am a single parent of two teenage boys. I have not told them about this situation yet and am very concerned about how the news will effect them. I'm determined to get the best doctor I can find to do the surgery so I can be there for them. Surgery will likely be sometime in April/May; I'm still gathering info and will likely schedule it within the next couple of weeks. I know many of you have been through quite a lot and looking for your words of wisdom.

Many thanks,

Ron

 

[Jkm7]

Hi and Welcome, Ron. Happy you found us but sorry for the reason.

I'll cut right to the chase and say the most important thing you need to hear right now that is absolutely the truth.

Heart Surgery has been advanced to such an extent it is in the realm of common and 'everyday'. While for us it is traumatic, frightening, overwhelming and all sorts of emotional variances but the fact of the matter is the fine surgeons and their teams do this as another day at the office. Your chance of anything 'permanently bad' happening to you during this surgery is mimimal to the extreme. Yes, of course, there is a tiny percent to whom the surgery is not kind but the odds are hugely in our favor.

I had two OHS in four years and my recovery from each was smooth, bump free and people look at me stunned when they learn what I've been through. They say they never would have guessed.

You need to believe this and to convey this to your sons. Let them come to pre-surgery appointments with your surgeon. Let them feel the confidence your surgeon exudes and the plain talk the surgeon will speak. They all do. These cardiothoracic surgeons are not known for being anything but straight talkers.

As important as your surgeon is the facility where (s)he operates. The nurses, techs, support teams are critical to good outcomes. Go to the highest rated heart center you can and look forward to a very good outcome. The high rated heart centers have seen it all, dealt with whatever possibly arises and their teams have been there and done it.

Let us know how we can help.

 

[escargome]

Welcome Ron. Likely as not, right now you are still somewhat stunned since as you say you have very little symptoms. However, was we sometimes attribute to getting old are actually messages from our body that our heart is having a hard time. I had nagging pain in my left jaw, shortness of breath when climbing stairs and just general sluggishness some days. I chalked it up to getting old and out of shape. Wrong, my heart was asking for help. So finally at age 56 I finally had that darn aotric valve replaced and after a very nice recovery, I found I could do things I had not done in years. So, find a surgeon who you feel you can trust, ask tons of questions, either here or with the doctor.

As to your sons, well I have always been straight up with my son and daughter so that is the only thing I can suggest. Fill them in on what you are going through, give them your plan of attack and let them know that you are truly confident that once your surgery of complete you will most definately be around to see them finish school, graduate college and start a life of their own.

I feel that knowledge is power and that power is there for you to grab and use. Keep us updated and post questions you may have. Usually someone is always around on this forum that can give you an honest opinion.

Best Wishes to you and your sons.

 

[Pat J]

Had my stenotic bicuspid aortic valve replaced 2 weeks ago

My young adult daughter was wonderful. Strong, asked good questions and advocated for me.

My heart did not restart easily do my mini surgery became a maxi and the 10 days of nausea were unbearable, but finally feeling good and glad the high anxiety surgery is behind me

 

[Lucky]

Hi Ron,
I am a new visitor but second time around having had my aortic valve replaced 11/12 years ago but told last week that my aortic root now needs replacing and from what I have read it often comes as a complete unit.

Why I am writing today is because my only child was 16 years old when I had my first surgery. Having had other family members seriously ill and then her mother having to travel away from their Island home and cope with the most important national exams I have to say that her support and resilience was fantastic.

Since then she has seen her father have by-pass surgery at age 72 yrs. When I told her about this latest surgery she was naturally upset but wants to be there when I have my surgery. The only part she does not think she can face is seeing me the day of surgery when all the machines are hooked up and everything is beeping away. For someone not use to this(I am a retired nurse) there is a huge difference to your sons seeing you like this or the following day when alot of this stuff is taken down.

I think honesty with your sons is the best policy but obviously nearer the time and the fact that the following day although tired you will be able to talk to them.

Very best wishes with the surgery.

 

[Duffey]

Hi Ron, and welcome!

I'm very sorry to read that you lost your wife, and I know that it must be difficult to break the news that you're facing major surgery, but I agree with the others that a straight forward approach is the best way. Getting the best surgeon, with the best team, is an excellent plan.
In the meantime, we're here to answer whatever questions you may have and to lend support both before and after your surgery. Glad you found us!
Mary

 

[scott.eitman]

My kids pretty much grew up with a heart patient. I sure didn't behave like one, but they have always known. We have a great picture of my older daughters and me when they were 4 and 5 with our shirts off and scar drawn on their chests.

Fast forward to 2010, my kids ranged from 9 to 17. We communicated openly about what was going on with me and my need for surgery. They all handled it well, I am sure there was fear and apprehension as I could not hold back mine. They all visited me in the hospital afterwards, at different times and in different number of visits. My 9 year old had her tonsils removed while I was in the hospital, so we recovered together at home.

As teenagers, I believe they are ready for open communications and would appreciate not keeping them in the dark.

Stay well
Scott

 

[bradvo]

Once you've done your research and convinced that you need repairing, keep in mind that it is better to have it done when feeling healthy rather than being rescued like some have.

I broke the news to my wife over the phone while she was visiting a friend in the hospital , told her to get used to hospitals
I had a meeting with my grown children and wife before surgery to let them know my wishes, just in case it went wrong.
I wanted us all on the same page , if my life was not to my expectations than don't keep me around to look at.
I did not feel at all that it would come to that, I was positive all the way. Just one of them meetings I felt was needed to set things in order.

 

[Guyswell]

Hi Ron,

You can do this and it won't be as bad as you imagine. Like you, I'm 50 years old. I just had my aortic valve replaced the second time on July 3rd last year. Nine years ago, I had my first valve replacement surgery and my aorta repaired. I hope I never need a third open heart surgery but if I do, I'm not afraid.

I do not see my surgeries as burdens. They are among my many blessings. When you need this surgery, it's a blessing that there are surgeons and hospitals that are very experienced and very skilled at fixing these problems. You are so lucky to have been born 50 years ago instead of 150 years ago.

Approach this experience with confidence and gratitude. Your kids will watch you to know how they should feel about all this. Your confidence will reassure them that everything will be O.K. (and it will).

I strongly encourage you to choose a very experienced surgeon and a hospital where these surgeries are daily events. It's a real comfort to know that your surgical team has "seen it all" and knows what to do in every situation.

Finally... don't put it off and don't waste time in denial. If your doctor is telling you it's time for surgery, it's because the risk of doing nothing now outweighs the risk of surgery. The best time to get this done is before your symptoms get worse and before your heart muscle suffers permanent damage.

Let me know if you have any questions or need more details. I volunteer as a heart advocate at my local hospital and have the privilege of providing reassurance and encouragement both before and after open heart surgeries. There are many people on this forum who will be happy to do the same for you.

Keep us posted.

 

[Herb]

Good luck Ron.

I've been out of hospital only a week now after an Aortic Valve Replacement. It was a walk in the park. I cruised through it all, letting the professionals around me do all the work and worry. I even enjoyed myself. It was all ho-hum routine, with me as a package being passed through the system with lots of smiling facing and good wishes from everyone. Never been so spoiled in my life.

I'd go back for a second op if I could, just to feel that special again. Those sponge baths by pretty nurses still plays on my mind and in my fantasies. :biggrin2:

The best is yet to come, Ron!

Herb

 

[epstns]

Ron,
The group has given you some sterling advice. I knew for almost 10 years that I would need my aortic valve replaced. Mine was done 2 years ago. I can't add much to the discussion of the very, very low mortality statistics but I can tell you that even though I didn't have the smooth, graceful recovery that most people have (I hit almost all the speed bumps and potholes on the trip), I still see it as a blessing every day I shall live. I took longer to recover, but recover I did - fully and even more. I feel better now than I did for the couple of years prior to surgery. The advances made by the medical profession in the last 5 or 10 years are nothing short of miraculous. No matter how scary and life-altering these things may feel to us, to our wonderful care teams it is "just another day at the office."

What can I say about having a rough, nasty, longer-than-usual recovery? It was wonderful. I'm back and I'm staying here! Don't worry about any of it. I always advise new folks who are nearing surgery that they should make all their decisions, develop a plan and then just follow the plan. Never look back, and don't second-guess yourself. I involved my daughter in the process (she was about 23 at the time), and even had her posting my post-op progress reports here. She became a great patient advocate while I was still in the hospital. That may be a way to involve your sons. You will want a patient advocate while you're in the hospital. Somebody who can keep track of your condition, test results, meds and what all the various docs say. You will not be clear-headed enough to remember it all, so ask one of the boys (or both to share) to keep a journal for you. My wife and daughter were very outspoken asking the docs why they did things and why they didn't do others. I feel that they helped to avoid some problems. I might have ended up even worse if my wife hadn't pressed them when the nurses couldn't manage my heart rhythm during the first few days. (Trust me, it is NOT a good thing to see your own monitor go "flat-line".) My wife started the discussion that resulted in my pacemaker implant. If they had managed me by meds alone, I might have come home acting like a very old man for the rest of my life. Now, I feel more like the Energizer Bunny (battery operated). The information may also come in handy as you recover, and if they add their own observations, it may become something that you can look at in years to come to realize what it all meant.

Once you've had the surgery and are ready to post back here, stop in and let's discuss cardiac rehab. I won't take all your time to discuss it now, but I think it is a very valuable program. We can talk later. . .

 

[Jkm7]

I really sailed through two OHS in four years and both times my surgeon and cardio felt I would not get enough out of cardio rehab to be worth it. I had excellent insurance which would have paid but I was 'well educated' as to what happened to me, what I needed to do for best recovery, was highly motivated and doing appropriate walking, good diet etc and when my two excellent physicians said they recommend it for most but didn't feel I'd get much from it, I listened.

They were right.
While it is a wonderful program for many, it is not for everyone.

 

[Oilman]

Welcome Ron, I'm also glad you found this resource for the experiences of others, I tell you it gave me some clarity and peace of mind 6 months ago, I had my valve and Aorta graph implanted. You are the same age as myself and Im sure your are going to phisically manage this just fine. Its sounds like you have had a tough couple years and in no way is that being too sob storyish. I have two teenage sons also and when I was told it was time, I let them know that Dad was going to get some repairs done and everything was going to work out, even if my mind still played , the what if's, but Im here today to say, everything did turn out OK, and our life is slowly getting back to normal, thanks to the care of the medical resources available today. I chose a mechanical valve with the advice of my medical team and others experiences on this site. I'm hoping to avoid a re-op, but only time will tell for sure. I am currently on warfarin and the management is no problem with a self testing machine. I currently just went back to work 4 weeks ago with 2 months of recovery under my belt, things are getting better all the time. I did attend 1 month of rehab and found it very good, but needed to get back to work. I have a good foundation for exersize, and cardio is key to my recovery. So I hope you can find some answers and peace of mind before your surgery, and I hope your sons can also find some strenght in knowing dad is going to get through this obsticle in life with no problem. Take care Ron, and keep us posted.

Doug

 

[iheart]

To ALL who have so graciously replied to my questions and given words of support, THANK YOU. It's obvious I'm in good company here. Again, I'm so glad to have found you all. Just the other day when I posted I had so many questions, and worries. Now feeling much more positive and confident about it. Hey, I know I have a bit of a trial by fire to go through, but hearing that so many of you have done this--some more than one time--and now are back to your normal lives, is so reassuring. What great advice you all have given me.

It'll be a little over a month till my surgery--I have a couple of Dr. appointments next week and I need to get more information, then it's schedule time. I'm going to use the time to get prepared, and I'm planning to do all I can to make this surgery a success from my end. I'm hoping to go to one of the best hospitals in the U.S., and get one of the best surgeons to do the work. I'll keep you all posted. Again, many thanks.

Ron

 

[Heart Of The Sunrise]

Ron: Can you be more specific than "Mid-Atlantic". Perhaps some members here can share with you their good experiences with their surgeon and hospital that may be close to your home. I am going to the best surgeon and hospital in the Philadelphia area. Do your homework and get the best care you can find and you will do just fine!:thumbup:

Good luck,

H.O.T.S.

 

[njean]

Hi Ron,

Just read up on your post....so happy to know that you made it through your surgery and are doing good. Take care of yourself!

 

[iheart]

N Jean,

It will be at least a month till I have my surgery--sometime around Mid-April, I hope--and I'm leaning towards the Cleveland Clinic. But at least I did make it through the initial shock of finding out I need surgery! : )

Thanks for the kind words!

Ron

 

[kimcdougc]

Ron, I am at the same point as you, looking for a good surgeon in my area to do my avr. It sure has helped me reading all of these posts. Good luck in your search and with your surgery. Kim

 

[njean]

N Jean,

It will be at least a month till I have my surgery--sometime around Mid-April, I hope--and I'm leaning towards the Cleveland Clinic. But at least I did make it through the initial shock of finding out I need surgery! : )

Thanks for the kind words!

Ron

My bad....sorry I misread your post and thought you had already had your surgery.

I think you're making a wise decision on choosing Cleveland for your surgery. They are ranked #1 in the nation I believe so you couldn't go to a better facility. Between now and April, gather as much information as you can. Also, ask for copies of all tests, procedures, that are performed. I kept a 3" notebook of all my records. It is now so full, I'll have to start another one soon!

Hang in there....the waiting is the worst part but April will get here before you know it!

 

[Jkm7]

Actually, U.S. News has ranked Boston's Massachusetts General as U.S. first place for cardiology and heart surgery.

http://health.usnews.com/health-new...12/07/16/us-news-ranks-best-hospitals-2012-13

Having had two OHS at Mass General I can vouch for the wonderful care I most gratefully received there.

Most certainly Cleveland Clinic is a very fine facility just not ranked first at the moment.