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NashvilleDave

My apologies for posting this in both the pre-op and post-op. I should have posted this here to begin with.

Hi everyone. This is my first posting to this forum. I must say that all of you are quite an inspiration! Here's my story, and then a couple of questions. First off, I am 32 years old living in Nashville, TN (no, I am not a native) and will be going in for aortic valve replacement surgery on the 21st. I was supposed to have it on 8/5, but, of course, I got sick the morning of the surgery (1st time in 6 years I have had a fever). Anyway, I will be having an artificial (St. Jude) valve put in. The reason I need the replacement is that I just found out 2 years ago that I was born with a bicuspid valve. Last year, it started to leak. I was also told that I wouldn't need surgery for at least 20 years. Whoops! Bad diagnosis I guess! I had my arteriogram last week. It did confirm my leak (crap!). What really upsets me is that I feel no pain, am in good shape, and have never had any health problems. Here are my questions:

1. I have heard from a few people that you can actually hear the valve "click" once it is inside of you? Is this true?

2. Are there certain foods that I should stay away from (besides salty foods of course) after the surgery?

3. What is a "realistic" recovery time. Can I be back at work in 4 weeks? Of course I won't push it. I am a business analyst.

Regarding the surgery:

1. How much pain will I really be in? Obviously, each person is different, but can I get an idea?

2. Did anyone ever have a problem waking up with the breathing tube down your throat? I am afraid that I am going to gag on it!

Any tips, or insights are REALLY appreciated! I am TERRIFIED that this is going to be....hell! I am already depressed that I have to psych myself up AGAIN for the surgery day. I know, positive attitude! It's very difficult to be positive during this.

I am glad to see that I am not alone in this "blessing". Thanks again!

Dave
 
Dave,
Welcome to VR.com. You'll find many helpful people here who have first-hand experience with what you're going through.

First, though, have you gotten a second opinion on your need for surgery? The fact that your bicuspid valve is leaking is not necessarily a reason to have surgery now. For someone your age, if you have no symptoms and if your left ventricle is in the normal range, many specialists would say that surgery is not yet indicated.

I had a bicuspid valve which leaked some since childhood. I did not need surgery until I was 51. Your heart's current efficiency and presence/lack of cardiomyopathy are the major factors in whether you need surgery now.

As to your questions, I'd suggest reading the stories folks here have posted about their surgical experiences. We ALL faced a lot of anxiety before surgery, but remember that the success rate for aortic valve replacements, especially for someone young, is over 98 percent. You will have some discomfort after surgery, but not much serious pain. The achiness and discomfort last for a few weeks, but many people go back to work (depending on your vocation) from 5 to 9 weeks after surgery. By 12 weeks out, your chest is pretty well healed and you start to feel pretty darn good.

The breathing tube after surgery is something you may not even remember. You will be well monitored by trained staff, and before you know it they'll have it out.

Please do read the post-op and pre-op forums here, as many of your questions will get answered by a variety of different perspectives.

Hang in there, you will get through this just fine, with a lot of good people here cheering you on!

Best,
--John
P.S. A mechanical valve is not your only choice. Please search within this site for "synergraft," "homograft," and "tissue valves"...you have lots of options, but not all may be available where you live. Many people travel for their AVR surgeries to places like the Cleveland Clinic and the Mayo Clinic (number 1 and number 2 cardiac centers in the country).
 
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Welcome, Dave!

Welcome, Dave!

Welcome to the site, Dave, and please, let us know what we can do to help you come to grips with your situation. I've been where you're at right now, and yes, it can be terrifying, but just keep reminding yourself that it's the right thing to do to preserve your heart! I would recommend you get a 2nd opinion on your diagnosis, if you haven't already.

I have 2 mechanical valves, as do a couple of other regulars on the site. I'll try to answer your questions, but you may get some different opinions from the rest of the group.

1 - Yes, you can hear the click, but it's a delicate, subtle sound. I actually kind of enjoy listening to them, and only a couple of people that didn't know I had them have ever noticed it in very quiet surroundings.

2 - Because you'll be on warfarin (Coumadin), you'll need to keep a consistent diet. This is a big topic on here, and you should check out warfarinfo.com

3 - Recovery time ... I'm 4 months post-op and I'd say I'm 95% back to normal, save some minor aches in my chest muscles when I stretch or cough. This is also highly variable, some bounce back immediately and others need a year to fully work the bugs out.

Pain - I never needed anything stronger than 2 Extra-Strength Tylenol. Finally flushed the bottle of Tylenol 3 the hospital gave me, untouched.

I can't answer about the tube down the throat as I had some complications and was on the respirator for 8 days. They took it out while I was sedated, and I have no memory of the tube. I shared your fear of choking on it before surgery, BIG TIME.

It sounds like you are otherwise healthy, so your biggest asset to a quick recovery will be a positive attitude. If you can keep a positive outlook, it won't be the hell you fear.

I hope this helps.

Johnny
 
My 46 year old husband received a St. Judes Valve on July 24. He too was asymtomatic. During a well check, the doctor heard a murmer and sent my husband for an echo. My husband had 20% regurgitation, but more importantly, the heart was already beginning to enlarge. We got three opinions which all concured that he needed surgery within a few months. We picked the summer because I work in the public schools and could be home with him. We did investigate the options of mechanical valve, biological valve and the Ross Proceedure. My husband opted for the mechanical valve because he didn't want another surgery in 10 to 20 years. Once in a while, my husband hears a faint ticking when the room is very quiet, but it doesn't really bother him.

I hope this helps you.
 
Don't worry..you will be fine...

Don't worry..you will be fine...

I had a St. Judes Valve on March 25th in Atlanta due to finding an Aneurysm. Have you had a chance to read the Coumadin topic? I was lucky that my Insurance paid for my own Protime. I do not have to go to clinics, ect. to have my INR tested which they will want you to do for the first couple of weeks, once a week, then maybe once every two weeks until your INR gets stable which can take a couple of months. I don't remember anything about tubes, ect. Woke up in private room..no pain..You will need someone to be with you at home the first week and maybe the 2nd week..You will have meds to take and someone to go with you to bathroom, ect. Then you need to walk, walk, walk outside as soon as possible. Others will share their stories with you. Bonnie
 
Hi Dave
I'm Joan..I know your Mother down here in Raleigh..I gave her this website to pass on to you. I saw here last night and she filled me in about you surgery canceellation. I'm so glad that you have written. The folks here are the BEST. You will get all the answers you need for your questions.
I had my Aortic valve replaced with a St Judes Toronto Porcine Valve and a triple Bypass last September down here at Duke. I also had my surgery cancelled ..so I understand how you feel. Hang I know the waiting is terrible. Like you I was scared to death..and the people here were a great help to me. I wanted to know everything and I was able to ask and become informed. I was Not to concerned about pain after reading here and finding out that it would be well controlled..and it was..I only took Tylenol after the second day home. My greatest fear was also the tube and gagging (I have a real thing about that and throwing up) I discussed it prior to surgery and it went just fine. I have a faint memory of it in the ICU..but not much.I went to rehab about 7 weeks post op and have continued to work out since then. In the time you have between now and your surgery..take time to research and get as informed as you can..and ask any questions that you need..We have all been where you are going and that fact was my biggest encouragement prior to my surgery. YOU will be fine!!
Joan
 
Dave
I was 33 when I had my valve replacement surgery. I had the Ross Procedure, so I can't comment on clicking valves or coumadin. I will leave to the experts on here., they know all the ins and outs.

As to returning to work at 4 weeks post op. I am a lawyer and there was no way I could have done anything close to a full schedule again at 4 weeks post-op. Maybe a 2 half days a week, maybe. I waited 6 weeks, and those extra 2 weeks made a lot of difference. One problem with going back to work, besides the work, is that after the first day or so all your co-workers are glad you're back and forget that you just had major surgery. Sometimes it can be overwhelming, even if you sit at a desk all day and talk on the phone. Just be aware of your limitations and take it slow and easy. There's nothing wrong with taking the time to recover and everything wrong with pushing it too hard. Besides, this is one time where you can lie around the house and not feel guilty and take it easy. Give yourself a break.

I had some big painkillers in the hospital, morphine pump immediately post-op and then Oxy-contin, which made me ill and then Tylenol 3, but that was only for the first 3 days post-op. When I went home I took maybe one or two T3's and then was only on regular Tylenol. The pain is more inconvenient than painfull, if that makes sense. It's not as if wild dogs are ripping you apart it's more like you have a big turtle shell stuck on your chest and cannot move.

I don't remember the breathing tube. It got yanked before I woke up. I do remember being extremely thirsty after it got yanked and trying to give the recovery room nurse my car for a drink of water. It didn't work. She only gave me a few ice chips.

Good luck withe the surgery, you'll do great.
-Mara
 
HELLO NERVOUS DAVE

HELLO NERVOUS DAVE

I'M EVELYN, OF EVELYN AND TYCE (AVR ST. JUDES IN JUNE.) WE'RE FAIRLY NEW TO THIS SITE, TOO, ABOUT 2-3 MONTHS. IN THAT TIME I'VE LEARNED MANY, MANY THINGS.

FIRST, I'VE LEARNED THAT THIS IS ONE OF THE BEST SITES AROUND. THE MEMBERS HERE ARE THE MOST CARING, KNOWLEDGEABLE, COMPASSIONATE AND UNASSUMING PEOPLE AROUND. THE KNOWLEDGE THEY IMPART IS BASED ON EXPERIENCE, AND THERE ARE NO QUESTIONS THAT ARE "TOO STUPID."

SECOND, I'VE LEARNED THAT YOU HAVE TO LET GO AND LET GOD. ONCE YOU'VE DONE ALL YOUR HOMEWORK AND FOUND THE BEST SURGEON AND HOSPITAL.....ONE THAT YOU'RE AS COMFORTABLE WITH AS POSSIBLE, YOU HAVE TO HAVE FAITH THAT YOU WILL GET THROUGH. THAT WAS ONE OF THE MOST DIFFICULT LESSONS FOR ME TO LEARN BECAUSE I'VE ALWAYS BEEN AN "IN CONTROL OF THE SITUATION PERSON," AND IT'S SOOOOO HARD TO LITERALLY LET SOMEONE ELSE BE IN CONTROL OF YOUR LIFE.

THIRD, I'VE LEARNED THAT YOU HAVE TO TRY TO TAKE YOURSELF OUT AND LOOK AT THE OVERALL PICTURE. IN YOUR CASE, DAVE, YOU'RE YOUNG, HEALTHY, ASYMPTOMATIC, AND THE PERCENTAGES FOR YOUR SURGICAL SUCCESS ARE PROBABLY 98+. BELIEVE ME WHEN I SAY I KNOW HOW DIFFICULT THAT ONE IS TO BE ABLE TO DO.....IT WAS MY FRIEND ROSS TO HELPED ME REALIZE THAT.

EVERYONE HAS A HUGE FEAR OF THE UNKNOWN, LIKE THE PROCEDURE, THE VENTILATOR, COUMADIN, PAIN, ETC. HOWEVER, ON THE OTHER SIDE ARE ALL OF US HERE WHO HAVE GONE THROUGH IT AND ARE HERE TO TELL ABOUT IT.

IF YOU GET A CHANCE, PLEASE VISIT MY PRESURGERY THREAD...I THINK IT'S ENTITLED "TYCE AND HIS AVR?"..... OR "A WIFE'S QUESTIONS." IT SEEMS SO LONG AGO NOW THAT I'VE FORGOTTEN THE NAME OF IT. PERHAPS MANY OF YOUR QUESTIONS CAN BE ADDRESSED BY THE ANSWERS I RECEIVED ON THAT THREAD.

GOOD LUCK, AND YOU WILL BE INCLUDED IN OUR PRAYERS.....THEY WORK, BELEIVE ME!!!!!

EVELYN

PS: I LOVE THE SOUND OF TYCE'S VALVE....IT MEANS WE ARE BLESSED WITH A SECOND CHANCE!!!!
 
Hi Dave,

Welcome to our cyberspace VR>com family! You will find a lot of useful information here.


I have to agree with the others. Get a second opinion if you haven't already done so. Also check out about the other valve possibilities, unless that has already been discussed at lenght.

I have two St Jude artificial valves and I do click. It's been a year and five months since my surgery and I don't hardly notice the clicking except at night when I go to bed and all is quiet. I rather hear the clicking to the alternative!:D

I wouldn't say going back at 4 weeks would be a smart idea. Maybe more like 6 to 8 weeks, depending on your job. Like the others said. Don't push yourself. Enjoy your recuperation time to give yourself time to heal. There is nothing wrong with being pampered after a major surgery like this. It will take a full year or more to be completely healed. It does vary from person to person.

I remember waking up in ICU with the tube down my throat but I was so sedated it didn't bother me. Within a couple of hours they had it out and a little while later they had me sit in a chair. Now that was painful! The first time you move you feel like your body is in a war zone, or at least thats what it felt like to me. :)

Painkillers are given to you so you don't really feel a lot of pain at first. By the time I went home I was on Tylenol 3 but I used those very sparingly. I felt it would be easier not to over do it too much if I could feel some pain, and could regulate how much to move around without hurting myself. I did walk three or four times a day, lengthening the distance each time.

Do as much research as you can. If it's a go for the 21st, I wish the best for you. A lot of us have been there and it is scary, but such a relief when it's over and done and your on the other side of the mountain! We'll all be rooting for you! Take care and God Bless!
 
Hi Dave,

Welcome, and you've certainly come to the right place for information and support. Many of us have been where you are today so we know what you are going through. The anxiety you are feeling is all normal! But by educating yourself and becoming informed what you are about to go through, you will feel less and less nervous. I promise!
I had two AVR surgeries within 11 days in 2000. The second surgery happened because of a screw-up at the Cardiologist office.
Read my story at:
http://www.valvereplacement.com/stories/christina_winkelman.htm
I have a mechanical valve and am on Coumadin.
No problem with clicking/ticking, but remember there are different valves on the market these days, and some click/tick louder than others.
Coumadin can be tricky at first especially if not stable yet. You should find a doctor who is knowledgeable about regulating Coumadin. Not every doctor is good at it!
http://www.cardiacconsultants.com/anticoag.htm
Valve surgery is not that terrible and there is little pain, just discomfort, especially getting up out of a chair on out of bed. I would advise you to get a very comfortable recliner for the first couple of weeks at home, and sleep there. Get yourself a pillow to hold over your heart for those evil sneazes and coughs. It'll help you tremendously!
Anyway, here is a site you might want to read up on.
http://www.cardiacconsultants.com/valvesurgery.htm
As for returning to work after 4 weeks I think that is a bit unrealistic. You might be able to go back to work at maybe 6-8 weeks, and part-time at first. You'll feel exhausted at first after just a few hours and will need to nap for a bit. But everyone is different in the healing part.
Here is a site that will prepare you and know what to take and not to take to the hospital.
http://www.viahealth.org/rgh/departments/cardiac/aboutsurgery.htm
I remember the last breathing tube being taken out and it was nothing bad for me. They yanked it out in no time and that was it. The chest tube was something else though. (OUCH)

Anyway, I am sure you'll have many more people coming with their first hand experiences. Read them all, and learn.. You are young and that also is a big advantage.

Come and see us often and ask anything you can think of. We are here to help you!


Christina
AVR's 8/7/00 & 8/18/00
TMC, Tucson. AZ
Dr. Gulshan Sethi
St.Jude's Mechanical
 
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Hi Dave-

Welcome to this wonderful site. You've got lots of built in cyber friends who understand what you're facing.

My husband has had 3 (2 implants and a repair) valve surgeries, 2 lung surgeries and lots of other things which were very complicated. He's still alive and clicking along with his 2 mechanical valves. He wasn't supposed to live past 50 years, but he's 71 and still here. He's been on Coumadin for 25 years. He doesn't even hear the clicking anymore.

First thing to remember, is the surgeons who do this are very highly trained. They know the inside of your heart thoroughly, and are in there almost every day. They really know what they're doing. Although it sounds scary, the surgery is so well developed that the mortality rate is somewhere around 1 and 1/2 percent to 2 percent for the first surgery in a good facility. The pain is well controlled, and they'll have you up and walking very soon after surgery.

Everyone heals at a different rate, but you're young and that makes a lot of difference. Probably going back to work at 4 weeks is too ambitious a plan. You will be battling weakness, fatigue, soreness and will also be adjusting to whatever medications they put you on after surgery. But it will give you your life back.

Wishing you good luck and hope to see you here often asking questions and filling us in on how you're doing.
 
Second Opinion

Second Opinion

Dave,
I responded to your posting under "Pre Surgery" but in reading the responses to your "Post Surgery" post I'd like to second the advise given to you by John Cochran. I was told that I had Aortic Stenosis in 1986 and that I likely was bicuspid. (Verified during surgery.) I had my surgery 4 months ago; 14 years later. Don't put surgery off so long that the condition negatively impacts the "self repairability" of your heart. But don't get it done too soon either. I went 14 years without symptoms and was asymptomatic when I had the surgery. I went to both Stanford University Medical Center and to Cleveland Clinic to make sure that I needed to take this step -- which happened on April 12, 2002. I second the suggestion of getting a second opinion. But also remember, every situation is different -- and that I am not an MD. Best wishes.
Don
AVR; CCF; Cosgrove; Bovine Tissue Valve; 4/02
 
Thank you!

Thank you!

Wow! Thanks for all of the great responses! This site is excellent! First off, I should have told all of you that I had a 2nd and 3rd opinions based on the echo. What sealed the deal was the results from my arteriogram taken two weeks ago. My left valve chamber started to grow. This is when my cardiologist said that he has "no doubt whatsoever" that I need to have my valve replaced ASAP (and he was stressing the ASAP quite often).

As for my surgeon, his name is Dr. Michael Petracek. He is based out of St. Thomas Hospital here in Nashville. He has been rated as one of the best valve replacement surgeons in the southeast. The hospital is also in the top 5 for heart disease, so I know I am in good hands.

Regarding work. He thinks that based on the type of work I do (computer programming), I can go back to work whenever I feel like it. He thinks 4 weeks is reasonable, but he has never had this surgery done to him personally before. I am taking what all of you are saying a little more seriously.

I am supposed to go on a business trip for a week 7 weeks after my surgery. I am guessing that this may be out of the question too. Sorry, but I HATE laying on my butt for more than a few hours without becoming bored. I don't know how I am going to handle 4+ weeks!

I am trying not to get overly freaked out about the situation. However, it is difficult not to think about anything else but the upcoming surgery. All of your posts have and will continue to be great comfort to me.

P.S. Joan, thanks for telling my mom about the site!
 
Thanks!

Thanks!

Wow! Thanks for all of the great responses! This site is excellent! First off, I should have told all of you that I had a 2nd and 3rd opinions based on the echo. What sealed the deal was the results from my arteriogram taken two weeks ago. My left valve chamber started to grow. This is when my cardiologist said that he has "no doubt whatsoever" that I need to have my valve replaced ASAP (and he was stressing the ASAP quite often).

As for my surgeon, his name is Dr. Michael Petracek. He is based out of St. Thomas Hospital here in Nashville. He has been rated as one of the best valve replacement surgeons in the southeast. The hospital is also in the top 5 for heart disease, so I know I am in good hands.

Regarding work. He thinks that based on the type of work I do (computer programming), I can go back to work whenever I feel like it. He thinks 4 weeks is reasonable, but he has never had this surgery done to him personally before. I am taking what all of you are saying a little more seriously.
 
Dave,
Sounds like you've done your homework, and that you are comfortable with your surgeon. I, too, was worried about the boredom/sitting around after surgery. What worked for me was to give myself "permission" to not think about work and to simply focus day-to-day on getting better. I stocked up on movies, magazines and books and allowed myself to enjoy all the attention I was getting from family and friends. After about two weeks, you'll likely feel like getting out for dinner or a movie (just remember to take a pillow along to cushion the car's seat belt). You won't be able to drive for about four weeks, so make sure you've covered your bases for transportation.

The healing process varies for everyone, but do remember that this is not only going to affect you physically, but mentally as well. Getting all the anestesia and other drugs out of your system actually takes several weeks. Even though you may be strong enough physically at four weeks, I sure wouldn't want to be depending on any code you write that soon post-op:eek: Some people have memory issues temporarily after surgery, and even judgement can be a little impaired. On the other hand, some people (thinking about Brooks M) are ready to go out and kick butt a week after surgery, although that's pretty rare.

Anyhow, as your surgery date approaches and you feel like you need to talk to people who've been through this, many of us including me would be happy to talk to you on the phone. Just e-mail and ask. Also, it is possible to post private messages to people here if you have a specific question for an individual.

Hang in there, Dave...you are going to get through this just fine.

--John
 
Yep, it sounds like it's time. You don't want the heart to get too enlarged.

I don't think you will be 'bored' the first few weeks. You will be surprised how easily you tire at first. And sleep seems to come in short naps (1 to 3 hours) rather than night long rest. MANY people find a recliner more comfortable the first few weeks. Sleeping slightly upright seems easier and your chest is not carrying any weight or side loads while the sternum begins to heal.

WALK as much and as often as you can and when you tire, rest. That is the best way to restore your energy and muscletone.

Undergoing this kind of surgery does take a leap of faith. Just remember you will feel MUCH better after you are fixed and you do NOT want to wait until your heart muscles suffer permanent damage.

It sounds like you are getting ready. Most of us feel some anxiety beforehand but we also find it easier to make the commitment when we realize the consequences of NOT proceeding. Most likely, you will find some peace when you realize you are more afraid of NOT having that surgery than you are in going ahead with it. :)

Best wishes,

'AL'
 
Dave - I wanted to welcome you to the web site and try to answer some of your questions.
1 - I don't have a click, since I have a homograft, not a mechanical.
2 - I took a trip to LA my first week of work, six weeks after surgery. It wasn't a problem.
3 - There was relatively little pain. I had some nausea, but was much better after the ICU.
4 - I don't remember the breathing tube. I guess I was out of it when it was in.
 
Schedule date

Schedule date

O.K. Dave, We've got you down for the 21st..Walter is going the 15th..Becky the 20th and you the 21st...Do you have someone to post for you? We will all want to hear how you are making it (which we all know you will be fine):) Teach them how to get on Valvereplacement.com..forum and post under POST-surgery. Does your hospital have e-mail for patients?....Don't worry about being bored the first few weeks..You WILL want to nap during the day...Meds, ect...but MOST important..force yourself to WALK...:D The more you walk the stronger you get and that nasty stuff comes out of your system.:p Stay in touch..Bonnie
 
Thank You!

Thank You!

John (and everyone),

Thanks for the words of inspiration. I guess I am still in shock that I actually have to go through this nightmare. Your words are very comforting in a situation that is very tough to deal with.

Looks like I will postpone that business trip for an additional month. I guess 7 weeks is a bit soon.

Thanks again.
 
Dave,

When I posted my first (very similar to yours) query here, I got so many good helpful responses I thought I'd just give you the URL so you could read them, too. Obviously peoples experinces post-surgery vary greatly but for people like you and I who are asymptomatic, young (or in my case youngish!) and healthy we have the best chances of sailing through with few problems. I've been very lucky with a speedy recovery and feeling very well over all. I think your chances sound very good, too.

Look up BrooksM posts. He's another young guy who sailed through this! He was one of my inspirations (obviously there are many here) on this sight.

http://www.valvereplacement.com./forums/showthread.php?s=&threadid=1691

Good luck and congratulations on finding this site!

www.caringbridge.com/mn/jymme
 
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