Newbie--36 YO Husband's AVR set 2/16/05

[akrohn]

Hello all. I have been "lurking" here for a couple of weeks as my husband went through final tests before the final decision to go ahead with AVR surgery. Now that we know surgery is iminent, my mind is racing with questions and you all appear so friendly and helpful; I know you can help us out.

My husband found about about his aortic valve leakage by a freak accident. He is a diesel mechanic and one night in 1998 a large rack fell on him while at work. He was taken to the ER as he was having trouble breathing. A cardiologist was brought in when they thought he had received trauma to his heart as it was enlarged and could have fluid around it. He was flown by helicopter to Springfield, IL, 2 hours (drive time) from where we live. A cardiac cath was done and it was determined his aortic valve was leaking, but was something he was born with and was not due to the trauma. They told us to get an echo every couple of years and to take antibiotics before dental procedures. He ended up with some fractured ribs and collapsed lung from the accident. Pretty good considering what could have happened!

We did an echo again in 3 years with a cardiologist in our city. He told us that we would probably want to do one annually to keep better tabs on it. At the next echo, he told us that we needed to start thinking about valve replacement. At that point, we decided to move his care to the Prairie Heart Institute in Springfield IL. They told us he would definitely have to have valve replaced, but probably not for years. For the last two years we have been doing echos and stress test every six months. The last regular check was in November and we thought everything had stayed the same. WRONG. We received a call on 12/27 that there appeared to be reduced LV function and they wanted better pictures to be sure. A TEE, Muga scan and stress test were done a couple of weeks ago and cardiologist said AVR needed to be done soon. A cath was done last Friday and the surgery date was set for 2/16.

Needless to say, we have a lot of things to consider. The choice for valves is becoming difficult for us. He really wants mechanical, but his career as a diesel mechanic and his "hobby" of home remodeling and construction makes us nervous about the coumadin. Cardiologist suggests tissue, but we really do not want another surgery in 15 -20 years. We meet with the surgeon on the 14th to discuss the valve choice, but we are still researching on our own. Any input would be greatly appreciated.

Has anyone on this board ever heard of the Prairie Heart Institute in SPringfield, IL? They are rated one of the top ten in the nation, but just wondered if anyone here has had experience with them.

Also, we have a 5 year old daughter and were wondering about bringing her to see Dad. I think my husband would like to tell her good bye the morning of the surgery, but I'm not sure that would be the best for her. I know it might help him, but we are taking the "easygoing" approach with her and telling her what is going on, but not a lot of details about how serious it really is. My sister is planning to come to our house to take care of her while we are gone and since it is only 2 hours away, I thought it might be best to wait until the 2nd or 3rd day after surgery to bring her over to see Dad. Any input on this would be appreciated as well.

I think my husband is getting more anxious as the date draws near. Does anyone have any ideas on how I can help him with this? He just told me this morning that he had trouble falling asleep again last night and when he finally did, he feels too tired to get up. I'm trying my best to be the strong one, but it is so hard. I don't know what I'd do if anything happened to him.

Anyway, we have a lot of family and friends who promise to be there for us, so the support group is there and I am planning on making good use of them.

I am sure I'll have more questions as the date approaches, but thank you for this opportunity to receive input. I think this is a wonderful site and it has helped so much already.

Thanks!!

 

[mszoola]

Hi--I'm a newbie too--my husband will recieve new valve this Friday (1/28)--his murmur was first detected mid December, so this has been a whirlwind tour of all this STUFF, and I (and I know he too) am getting more nervous with each passing day. Hubby decided on a bio valve as he is more than a little accident prone and too nervous about blood thinners (& he is a diesel locamotive engineer). He is only 53, so we figure this valve will probably not be the last either, but looking at the strides made in the last 15 years, who knows what they will be capable of in the next 15.

 

[Nancy]

Welcome to the site.

Choice of what type of valve is one of the most discussed thing on this site. It's a very personal choice and has to be well thought out based on your lifestyle and how many surgeries you want to go through in your lifetime. And, of course, whether you can handle being on Coumadin.

My husband who is 72, has had 3 valve surgeries. He has two mechanical valves, an aortic, a mitral and then had a small repair on his mitral.

He's been on Coumadin for close to 28 years.

This surgery is very highly perfected, in spite of the delicate nature of it. The surgeons who do it are highly trained and know how to handle just about everything that is wrong inside your heart. They are in and out of hearts sometimes a couple of times each day.

You will be taken care of with the very best nurses the hospital employs, and at first the care is one on one. Then one to two or three, and then you will graduate into the more normal cardiac setting. All in all, you will be in the hospital for between 4 and 7 days depending on how things go. The recovery takes about 6-8 weeks. It a little tough for the first week or two, but then things start to improve on a daily basis. After 6-8 weeks, your recovery will slow down, and the final healing will continue to take place. At one year, you will be feeling really great, barring any unforeseen problems.

Stick with us here and we will help you both get through it. We've had lots of experience.

Best wishes.

 

[JimL]

Welcome!

My surgery was over three years ago, and I haven't changed any of my activities now that I have a mechanical valve and am on coumadin. I am as accident prone as I ever was, and am constantly getting little cuts and such. They bleed as much (or as little) now as they ever did. With my three years of experience, I wouldn't hesitate to go with the mechanical valve.

 

[geebee]

Welcome akrohn & mszoola, I am sure you will find this website very helpful.
It is always a shock to schedule surgery even when you've known it was coming. The "staring you in the face" part is a bit overwhelming.
As others have said, the choice of valve IS very personal. You, your husband, the cardio & the surgeon will all have thoughts on what is best. Ultimately it will be your husband's decision because it's his life.
There are a number of us on VR.com that have been on coumadin for over 20 years. Personally I have not found it to be an issue. I am a fairly active person and, although I don't skydive, I do scuba dive, swim, play basketball & golf, etc., etc.
I also spend a lot of time in the kitchen using sharp knives & I have a meat slicer that I use every couple of days. I have never had an accident while doing any of the above activities.
I have broken my foot and cut my finger very deeply (on a car door handle) and I am sure the bruising & bleeding was more than a person not on coumadin would have but it was controllable.
I also just started home testing so now I am free of the ties to a lab while at home and traveling.
In other words, life is good on coumadin.
There are never any guarantees in the world of VR. Even people with mechanical valves have had to have them replaced for various reasons (me included). So don't be mislead that a mechanical will definitely mean your husband will never need surgery again - chances are he won't but it is possible.
However, with a biological valve a resurgery is a guarantee. So you just have to weigh the risks and determine how you feel the cards will fall.
As far as your child goes, I agree that you should not take her to the hospital while your husband is "wired & tubed". Taking her to the hospital before his surgery might be find if she doesn't frighten easily (remember there will be nurses in and out to prepare). Also, a visit once all the wires and tubes are gone will make everyone feel better.
Once home, make sure you have a recliner for your husband with lots of pillows. Stock up on lots of easily prepared foods as you will want to spend time with him and not on cooking. You might also consider disposable dinnerware.
I think I've written enought for now. I wish you well.

 

[Karlynn]

Welcome to both are newbies!
Akrohn - how old is your husband. Depending on his age, he may be looking at more than one repeat surgery if he goes with a tissue valve. That's not to say that there aren't instances when a mechanical has to be replaced, but it's not a "given" that a tissue valve brings with it.

I've had my St. Jude mechanical mitral valve for 13 years. I received it when I was 32. As I mentioned many times before, my life didn't have the time for another valve surgery around the time when I would have been having one had I gone with a tissue. That would be something for you to think about. You have a 5 year old daughter. The younger you are, the less time tissue valves last, so depending on your age, don't rule out needing another valve in 10 years if you go with the tissue valve. My children were 5 and 7 when I had my replacement and their high school graduations, sports involvement, heading off to college etc, etc, were all around the time I would have been looking for another valve.

Coumadin isn't the big scary monster that so many doctors can make it out to be. It is a serious drug that needs to be carefully managed, but it certainly doesn't prohibit living a normal, active life. As far as your husband's job, I would look at the likelyhood of serious head injury. Has he incurred head injuries from his job and is there more than a slight risk of that? Head injury is about the only serious injury that needs to be avoided due to the danger of bleeding. We have a wonderful member here who is a Coagulation specialist. He has his own warfarin (Coumadin) clinic and also has his own web site. www.warfarinfo.com I would recommend going there and doing some reading.

As others have said, valve choice is a very personal one. There is no absolute right or wrong answer - other than no valve replacement at all!!!!! You make the choice that you feel most comfortable with, have it done and then go on to live a wonderful life.

Best wishes!

 

[rmn]

Welcome to the site, from one Newbie to another! I'm in the same situation as your husband - same surgery date and just two year younger. i'm also currently struggling with the valve choice issue, though I've pretty much decided on a mechanical valve for a variety of reasons.

As far as helping him deal with the upcoming surgery, what I find I need is just someone to listen to my random thoughts, whenever they occur. My wife and I have a 16 mo. old and she's pregnant with our second, so even though we talk through things in pretty good detail, I don't want to unnecessarily worry her with too many specifics. So I try to keep upbeat and shoulder as much of the worry as I can. It's certainly tough at times and definitely gets harder as the date approaches.

As far as your daughter, I can't offer advice on that because my son is too young to go to the hospital. To me, dealing with the thought of not seeing him for even a week - under those circumstances - is almost unbearable. My wife will be fine I'm sure once I'm through surgery OK, but to not have my son know I'm OK is going to be the toughest part.

For me, reading the stories and posts on this site has helped me understand that there are many, many positive people who have and are going through the same thing you and your husband are, and have made it through better and stronger than before. That's encouraging.

 

[momshell7]

Hello and welcome!

Hello and welcome!

Hello, I can relate to all the questions you are having. My husband just turned 38 and had his AVR in October of last year. He is also very active. He coaches our son's t-ball team in the summer and things like that. He has a tissue valve. It is the porcine valve. This is a stentless valve. It is supposed to be the best tissue valve currently available. He surgeon and cardiologist both highly recommend it. We did a lot of research on valves prior to the surgery and felt this was the best one for my husband. The valve choice is a very important choice that only you and your husband can decide which is best for him. My husband did not want to deal with the blood thinners the rest of his life.

As far as another surgery later on in life, he knows he will have another one. The valve that he has is fairly new and none of the people with them have had to have them replaced yet. They are running so far at around twenty years. With the advances that have been made since my husband has his first surgery twenty one years ago, we are hoping that when he needs this valve replaced there will have been even more advances.
He said that his surgery this time was easier on him than his first one. Needless to say, he was in better shape back then and was only 16 so that says alot for the surgeon and surgery this time around.

As far as kids go, we have a four year old and an eight year old. They handled it all pretty well. They were told enough about what was going on so that they know Dad had to have his heart fixed and would be in the hospital for a few days. They got to see him the day after his surgery. It was after he had been moved to a room on the cardiac floor. Most of the tubes had been removed by then so he wasn't too scary. The younger one was a little scared of the scar at first but after a while he wanted to touch it. Both boys were very protective of their dad when he got home. They would yell at him for lifting any time he would touch anything, even the remote control. It was so cute.

Jeff was also given a device called a heart hugger in the hospital. You wear it 24/7 for the first few weeks. It is like a vest with handles and you grap the handles and hold them together when you cough, sneeze, try to get up or down etc. I hightly recommend that you get one if your hospital doesn't provide one ( It seems that most hopitals don't use them yet). This seems to be a sore issue with those who have had surgery and not had one, so to those I appologize for once again bringing it up. But my husband has had two surgeries, one with the device and one without and he said he would never go through another surgery with it. You don't have to have it, you will survive just fine without it, But why not make things as easy as possible during recovery. Sorry for rambling!!

If you have any questions or just need to talk please don't hesitate to send a private message or email.

My husband also gets on this site. His name is twoboysdad. You can look up posts by him to get his view on all of this.

Again, welcome to the site!!

Michelle

 

[Phyllis]

Welcome to mszoola and akrohn. I have taken the liberty of adding your surgery dates to our calendar. Best wishes to both of you. You've already gotten lots of good advice and I'm sure we will all be here to help with any questions or support needed in the weeks to come.

 

[akrohn]

Thanks Loads

Thanks Loads

Thanks so much for all of your responses and for allowing us into this special family! Thanks so much for all of your input. You've been a big help already and it just helps knowing there are others out there who have been through this.

Keep thoughts and suggestions coming! We can use them all I am sure!

 

[Karlynn]

Head injury is about the only serious injury that needs to be avoided due to the danger of bleeding.

I reread that and laughed out loud. Sure, go ahead, cut off an arm or leg, just don't bump your head. What I meant was that a head injury is the most likely type of injury that can cause some serious complications when on Coumadin.

Many of us have take some pretty bad spills and falls. We get sore and bruise a lot, but the majority don't become worse because of Coumadin. I've sliced my knuckle cutting vegetables. It bled for quite a while, but I was able to stop it. Probably should have gone and gotten it stitched up because I have a nasty scar there. But I don't think it was much worse of an experience because of Coumadin.

As I meantioned, my kids were 5 and 7 when I had my surgery. They knew Mommy was going in to get fixed up. They came to see me about day 4 and my husband said their mood lightened considerably after that. I'm sure you'll know what to say to reassure them.

 

[McCln]

As you can tell, there are pros here, years of experience. I was born with a leaky valve myself. Had repair at age eight and replacement at age 36, three years ago. It is not unusual for it to detected years later when the patient is not having problems. Glad you had him checked and now looking to get the surgery over. I have a St. Jude's valve, on warafin and active. Not like your husband, but there are others here that have various careers and activites that can help you and your husband decide on what route to take. Good luck.

 

[Gemma]

Hi akrohn, mszoola and rmn!
My boyfriend Jim was diagnosed with a bicuspid aortic valve in March 2003, after getting some chest pains at night - turned out his surgeon considered it to be a fairly urgent case (LVEDD at about 7.7cm immediately pre-op) and he had his AVR surgery in December 2003. He was very lucky in that there was no lasting damage done - his LV is now back within normal parameters - but to say it was a shock would be a major understatement. There's all this "STUFF" to get your head around and it's like learning a new language - but one day it suddenly becomes just one of those things that you have to do/know and life gets back to a different kind of normal. Plus now when Jim meets old friends he hasn't seen for a while he has a really great "what have you been doing with yourself" story to tell!!
Jim is a precision engineer - involves using fast-moving machinery and sharp/heavy materials. He also spends the majority of his spare time rebuilding old motorbikes and uses a chainsaw occasionally, hammers nails (and his thumb - ouch!) and does all kinds of "risky" activities. Fell off his trials bike onto some rocks a few weeks back - nasty scrape on his back, but no worse than before he was taking warfarin. You guessed it - he went for a mechanical valve in spite of his accident-prone lifestyle.
You will notice that everyone here who's had valve replacement surgery have one thing in common - they all believe their valve is the "right" one. Those with mechanical valves can cope with the daily warfarin and regular blood tests and most find it really doesn't interfere with their lives too much. It's the price they pay for not waiting for the day their doctor says "yep, now's the time to start thinking about another valve replacement". On the other hand those with tissue valves can cope with knowing their valve will one day wear out, as it means they don't need to worry about going for blood tests monthly or whatever, and taking warfarin every day, and can still drink a bottle of wine or eat a field full of spinach to themselves if they so choose. Then there's the elite Ross Procedure group, who hopefully get the best of both worlds if they find an experienced surgeon who's really good at the RP and nothing goes wrong with the valves in the future.
The point is, pretty much everybody is happy with their choice - they are living their lives the way they want to live them and doing so to the fullest. Valve choice is a very personal one but if you consider what really matters most to you it does get a bit easier.
One of the most important things to do is keep talking to each other! akrohn, I know just how you feel wanting to be the strong one for your husband. I was just the same until the night Jim was in hospital before his operation - then I cried my eyes out pretty much the whole night, had about 3 hours sleep - of course all totally unnecessary as he got through it fine but doesn't feel that way at the time. And it helped getting it all out I think. Because the time you really need to be strong is in the first few weeks after the surgery when your SO wakes you in the middle of the night wanting more painkillers/cushions/water or gets upset because he can't do EVERYTHING right now! Maybe you could meet up with some friends for lunch or something on your own and just chill out as much as you possibly can for a few hours?
rmn - I'm sure your wife is aware there are things worrying you. She's probably worrying about the same things. May I suggest that you tell her some of the stuff you've been keeping to yourself? You'll be pretty out of it for a day or so after surgery and it may be important for her to know something. Just a thought . Also, I'm sure you'll be able to talk to your son on the phone so he'll know his Daddy's OK.
You're all part of an international family now who'll help you over the mountain and be waiting anxiously for news on the "other side" .
Gemma.

 

[inlaguna]

Our daughter was nearly five when my husband had surgery in Dec. Every situation is different but for us, the pre-surgery visit was a little too emotional so she didn't see her Dad until 2-3 days after surgery. You could see & hear the relief in her when I told her that the surgery was over & Dad was okay but needed to rest for a few days. She was okay with that as long as I continued to remind her that she would visit soon. Tried to trick me to go a day earlier -- told me to sing a certain song to Dad for her when I visited. I started to sing and she said, "No, no. You're not singing it right. Let me get my coat and go with you."

She did play hospital and surgery with her Grandmother for days & days. Just trying to work all the questions out in her head and figure out what was going on. I think that helped her understand.

The only real advice I will offer is this -- accept all the help you can from your family and friends. They will likely be less nervous / emotional than you & your daughter may worry less.