New to this forum..scared

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pspingmom

pspingmom

VR.org Supporter
Supporting Member
Joined
Oct 8, 2010
Messages
29
Location
Pomona, California
I was told 3 years ago that I had a heart murmur. I was sent back to the cardiologist a couple weeks ago, he requested another echocardiogram, and is now telling me I have Aortic Stenosis, and Need Aortic valve replacment surgery withing the next 4 months.
Im scared. I've been reading this forum all last night. (Couldnt sleep). THis Dr. hasnt told me crap. How do you get through the months before without worrying and stress, when that in itself makes the problem worse.
~Debra:eek2:
 
Hi Debra,

I know what you mean about scared. I went into a-fib in July last year, and on Feb 26 had surgery to replace the aortic valve, a maze procedure to stop the a-fib, and a repair to the mitral valve.

Once I was diagnosed, I went back to my PCP and told him about my anxieties. He put me on 10mg of paroxetine (Paxil), and l got my life back together.

After that, I was able to take care of things without bursting into tears.

As for the surgery, it's a big one, but my experience was that it wasn't nearly as bad as I thought it might be. Yes, recovery has taken awhile... in fact, I still have to add a pacemaker. That's because I'm special. Doubt you'll have problems like that. I spent 9 total days in the hospital (a-fib acted up), and then came home (1 1/2 hr from hospital). Since it was winter and there was snow on the ground, I did laps around the house.

By late March, I was in a formal cardiac therapy program, and really began to get better. By the time I graduated, I had regained nearly all my strength. This summer I've been able to work on the farm as if nothing ever happened.

Keep your chin up and your eye on the positive end result, and you'll do very well. There are many others here who have gone through the same process... diagnosis, fright, depression, anger, and finally to "Thank God, I'm repairable!"
 
Whoa Debra!

Take a deep breath (or 2 or 3 or however many it takes to relax).

Just about everyone on this forum (1500? members) is a SURVIVOR of Valve Replacement Surgery or a family member of a Survivor.

Yes, Valve Replacement is major surgery, BUT it has evolved to a Very Successful Artform, especially with highly experienced Valve Surgeons. (1% risk of mortality, 1% risk of morbidity for first time Valve Surgery under age 60 or so vs almost certain demise in a few years if left untreated)

It would be wise for you to obtain a copy of your Echocardiogram report to become familiar with your parameters and how they compare with the Normal Range. Copies can be obtained from the facility which performed your procedure. You may have to pay a copying charge. For Aortic Stenosis, one of the Key indicators is the Effective Valve Area. Anything less than 0.8 sq cm is considered a trigger for recommending Aortic Valve Replacement.

It would also be wise to get a second opinion, preferably from a SURGEON and preferably from a surgeon who performs a good number of Aortic Valve Replacements (say over 100 per year...the Really Prolific ones do up to 400 heart surgeries of all types per year). Once a Cardiologist has diagnosed your Valve Disease, there isn't a lot they can do other than possibly medicate you to slow the progresssion of your disease and to refer you to a Good Surgeon.

To learn more about the experience, I recommend starting by reading the "stickys" at the top of the Thread Listings for the Pre-Surgery Forum, Post-Surgery Forum, Valve Selection Forum, and Anti-Coagulation Forum. THAT should make you tired enough to get to sleep -)

Feel free to ask more questions as they come to your mind.

Remember, If we can do it, SO CAN YOU !

The Really GOOD NEWS is that your condition was discovered in time to get it FIXED to prolong your life.

'AL Capshaw'
 
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ALCapshaw2 said:
Whoa Debra!

Take a deep breath (or 2 or 3 or however many it takes to relax).

Just about everyone on this forum (1500? members) is a SURVIVOR of Valve Replacement Surgery or a family member of a Survivor.

Yes, Valve Replacement is major surgery, BUT it has evolved to a Very Successful Artform, especially with highly experienced Valve Surgeons. (1% risk of mortality, 1% risk of morbidity for first time Valve Surgery under age 60 or so vs almost certain demise in a few years if left untreated)

It would be wise for you to obtain a copy of your Echocardiogram report to become familiar with your parameters and how they compare with the Normal Range. Copies can be obtained from the facility which performed your procedure. You may have to pay a copying charge. For Aortic Stenosis, one of the Key indicators is the Effective Valve Area. Anything less than 0.8 sq cm is considered a trigger for recommending Aortic Valve Replacement.

It would also be wise to get a second opinion, preferably from a SURGEON and preferably from a surgeon who performs a good number of Aortic Valve Replacements (say over 100 per year...the Really Prolific ones do up to 400 per year). Once a Cardiologist has diagnosed your Valve Disease, there isn't a lot they can do other than possibly medicate you to slow the progresssion of your disease and to refer you to a Good Surgeon.

To learn more about the experience, I recommend starting by reading the "stickys" at the top of the Thread Listings for the Pre-Surgery Forum, Post-Surgery Forum, Valve Selection Forum, and Anti-Coagulation Forum. THAT should make you tired enough to get to sleep -)

Feel free to ask more questions as they come to your mind.

Remember, If we can do it, SO CAN YOU !

The Really GOOD NEWS is that your condition was discovered in time to get it FIXED to prolong your life.

'AL Capshaw'
Click to expand...

I was curious where you got the number that the really prolific surgeons do 400 aortic valve surgeries a year? That seems pretty high, close to 2 a day (taking off weekends ect)

Debra, Welcome. I know it must seem to be overwhelmong now, but luckily you found this great place and can see so many people have this surgery and do really well. As others have said, if you think you could use something for your nerves ask your doctor, there is nothing wrong with that.
 
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Hi, I had a long wait for my surgery. Honestly the first week of finding out was bad, the day I hot my date set, and a few days before. I was able to accept it because I was going to be fixed. If I was born 100 years ago I'd be dead by 30. I'm 11weeks out and have all of my energy back. Do your research, find a good hospital and surgeon. And keep coming here and asking questions or just vent. Read the resources forums on here. The more you know the better you'll feel. Open heart surgery is serious but isn't as risky as I thought when they told me I needed it.
 
Dear Debra,

Welcome to the forum. I hope that we are able to put your mind at ease by offering you the strength and support you so desperately seek right now. We were all at the point that you are ...frightened beyond our wits when we first heard we needed OHS. But here we are.....survivors! And you will be too!

Read our stories, ask questions and then look forward to having your surgery and going on with the rest of your life! :)
 
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Hi Debra,

I can't really add much to what the other members posted here, they gave some great advice! I would like to welcome you to the forum, though. You have alot of caring and very supportive people on here! Most of us are survivors of AVR ourselves. We are all here to share with you, our experience with this surgery, and help get you through it.

One more thing. It is very normal to feel very scared when you have this diagnosis. You will get through it.

Take care and keep posting.
 
Hi Debra,

Though I knew I would need surgery one day, yet I could not bear the news.

I broked down and I could not get up. :(

I personally could not have been able to concentrate on making decisions as of which hospital, which surgeon, or which valve to choose if I had not taken Prozac. My PCP recommended it and I welcomed it. I, personally, could not sleep either without sleeping pills which I stopped after the surgery.

Of course I am only sharing my experience and what worked for me. Ask your doctor if he recommends anything, if you are willing to take any medication to get you through this stressful time.
 
Hi Debra

I was in your shoes a few months ago. I waited 2 months to have my surgery due to scheduling with my surgeon. I choose the best heart hospital and a very expeirnced surgeon. That way I felt if something went wrong, I could not say I did not make the best choice possible. I went to the Cleveland Clinic which is rated as the #1 heart facility in the US - as I understand their literature. The expeirnce was wonderful except for the surgery! Every person that I worked with were friendly, courteous and 1st. class. I can't find one bad thing to say about my hospital stay. I am 8 weeks post op and just starting to feel normal again. It seems to be a slow recovery, but it is a very major surgery. You will be very tired in the begining. I started having more normal energy about 6 weeks post op. I can't tell you about anything beyond 8 weeks yet. I did need help for a couple weeks. I could not have stayed alone since I was so weak and tired. I could hardly lift a fork to eat my food. I have always been very active, so I think that helped me have a good recovery. I had a-fib in the hospital which kept me there longer. One bout a couple weeks after getting home which put me back in the hospital for 3 days. Other than those bumps in the road, I have been very lucky. I start PT next week and I know that will help me pace myself with my activities. You are not sure how hard you can push yourself this early on.

There are a lot of wonderful folks here that are very supportive. Be patient, read a lot and ask a lot of questions of your surgeon. You will eventually come to a decision that you feel comfortable with.

Pat
 
I did the same as Pat, I went to the best surgeon for what I needed done, which also ended up being at the Cleveland clinic so I'd never worry if my valve fails that I made a bad decision. There are complications that you may want to know about other than the typical ones they tell you about. I had a-fib after surgery as well as Pat, a decent percentage of people do, but check the resources forum for a link, there are ways to reduce your chances of this happening. You'll want to be aware of the more common complications so that you'll know what to do. Many people have no problems at all. And when I speak of complications I am including very minor easy to fix ones.
 
Lynlw said:
I was curious where you got the number that the really prolific surgeons do 400 aortic valve surgeries a year? That seems pretty high, close to 2 a day (taking off weekends ect)
Click to expand...

I double checked with a Nurse friend who told me that the most prolific Heart Surgeons may reach 500 surgeries per year. That would average 2 per day, assuming a 5 day work week. She indicated that of that number, 20 to 50% may be valve surgeries. Coronary Artery Bypass Grafts (i.e. Bypass Surgery) is by far the most common type of Heart Surgery.

I have heard of surgeons performing 3 in one day and KNOW of a surgeon in my state who did not leave the hospital for 3 days during a particularly 'busy period'. I 'hope' he was at least able to catch some naps between surgeries! I am also aware of a Heart Transplant Surgeon who performed a transplant throughout the night when a heart became available, in addition to his already scheduled daytime surgeries.

'AL Capshaw'
 
Good luck to you. I am 4 days younger than you. At 34, I had 8 weeks notice of my surgery, but did not have the info on the Internet to assist. This year, I had 4 months notice, but only 3 weeks notice of the surgery date.

Use this tie proactively to get information. You have plenty of time to get the info you need to make educated decisions. I used my time in both cases to make sure that I was comfortable with my decision as to valves. I recommend doing what you did last night and reading the information on this site; talk with your cardiologist (yes, cardiologist, not necessarily the surgeon); talk with the surgeon and then try to talk directly with people who have gone through it.

In the end, it is not that bad. It sucks, but we are survivors!
 
I suppose I am a more controlled person, for when my cardio first told me I had an ascending aortic aneurysm of 6cm and a very leaky aortic valve,at age 34, my very first thought was, "holy crap, I'm going to have a scar!" Of course, after I got home I was even too afraid to vacuum for fear my aneurysm would burst. You live in Ca where there are great heart surgeons! Find one that is so confident that he or she makes you feel confident that you will be like us, a ohs survivor!
 
ALCapshaw2 said:
I double checked with a Nurse friend who told me that the most prolific Heart Surgeons may reach 500 surgeries per year. That would average 2 per day, assuming a 5 day work week. She indicated that of that number, 20 to 50% may be valve surgeries. Coronary Artery Bypass Grafts (i.e. Bypass Surgery) is by far the most common type of Heart Surgery.

I have heard of surgeons performing 3 in one day and KNOW of a surgeon in my state who did not leave the hospital for 3 days during a particularly 'busy period'. I 'hope' he was at least able to catch some naps between surgeries! I am also aware of a Heart Transplant Surgeon who performed a transplant throughout the night when a heart became available, in addition to his already scheduled daytime surgeries.

'AL Capshaw'
Click to expand...

I know many surgeons that do 2 or 3 surgeries a day, or probably 400 or so surgeries a year -(Even when most only operate 4 week days and leave 1 week day open for pre op and post op patients and do emergency patients on their weekends on call) but that is ALL surgeries, I think it would be pretty hard to find surgeons who do 400 AORTIC valve replacements a year or probably even 400 VALVE surgeries a year. So would hate to see people not go to very good surgeons, because they don't do even close to 400 Aortic Valve surgeries a year, (or even 400 valve surgeries) they will probably have a very hard time, if they can even find anyone.

for example Cleveland (I use them because they do the most and their numbers are easy to find) did 1,613 Aortic valve surgeries in 2009 (they did 2677 VALVE surgeries) IF you do a search for surgeons their who list valve surgery as their specialty at the main campus, there are 14, so I doubt even there you will find a couple/if any who do 400 Aortic valve surgeries.
 
Welcome to the forum.. My husband age 44 just had aortic vave replacement with mechanical valve on Sept 14, 2010. Yes it is very scarey but at least it is treatable. He is doing great at almost 4 weeks post op. He is already walking 3 miles a day. Still wants naps in afternoon but doing great. Ask any questions. The people here hepled us tremendously.
 
Welcome to VR. The anxiety at pending surgery is normal just as so many others have just said. I think one deals best with the fear of what is happening by learning as much as you can about what is happening and what you can expect and there is no better way of doing that than read our experiences here in VR. Also, talk with your friends about it and when you next speak with your cardiologist and surgeon be prepared with questions for them. Write down your questions as you read and take your list with you. Well before your valve replacement, you will have gotten past these initial feelings. and are likely to feel a lot more comfortable with things. For starters, let me repeat what the others have said...the fear is normal and it is not going to be nearly as bad as you imagine. Remember, the problem is your diseased valve. Surgery is your path to a new future. To a great extent, your future is pretty much what you choose to make it, especially in the months of recovery. Many of us find those months of recovery a special time in our lives. If you have questions, please ask them.

Larry
 
Welcome to the board - I joined recently and these guys have been so super helpful. They helped my mother through her surgery, and I know when the day comes for mine, these guys & gals will be awesome. I don't have much to offer, just wanted to let you know you've come to the right place :) Hang in there - you will be in my thoughts & prayers!
 
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