Surgery 3/9 starting to freak

[LindaVA]

Hi everyone. I could use some support. I'm not a super frequent poster but have posted now and again since I found in October 06 that I needed surgery. My MV surgery is 3/9 and I'm thinking about backing out.

I was really really really okay under yesterday when I went for my preop appointments. It sunk in with a thud that my surgery is only 3 weeks away.

I'll be very blunt. I'm afraid I'm not going to wake up. I've had surgeries in the past so I don't know why this is such an issue with me. Everyone keeps saying given my age (late 30's) and health, exercise, eating habits etc etc. that I have minimal risk factors, but I have an 8 yr old daugther and dammit, I want guarantees, and no one can give me that. I mean even if they gave me 1 in a billion chance of dying, if you are that 1 in a billion it pretty much sucks to be you, no?

On one hand I feel like this is elective surgery and am I a darn fool for rushing into this, and on the other hand, I know that sometime in the next few years I would have to get this done anyway. Maybe I can "buy" another 2 or 3 years with my daughter. I actually told my husband yesterday that I would feel better just taking the course that God gives me and not fixing it and dying when that time comes even if thats a few years from now. That's what the chicken in me blurted out yesterday! That is not rational at all. My husband is very practical and he says no, I will do it now when I'm in the best shape of my life and that is the best guarantee I can get for a good outcome. Why wait until the bad side effects start. I know, I know, you all agree with him.

On the one hand I want to make a videotape telling my daughter how much I love her and all my guidance for her future and on the other hand the thought of producing such a thing is so stressful and so dire, that I don't want to let myself think that death is possibility and don't even want to go there. I NEED to believe I will wake up from this. I mean we don't all leave our houses every day to go to work writing letters to our loved ones-- we all beleive we are coming home at 5'oclock and don't even give it a second thought. . On some level that's how I want to approach this-- as routine. Please someone,do I have a right to feel secure that I will wake up and be healthy? They do these fairly frequently, right... Then who dies during surgery, who are these numbers?????

As you can see, I'm all over the place with this, even in that same email I'm Dr. Jeckyl and Mr. Hyde!
L


Linda

 

[Marguerite53]

We've all gone through this. You are not alone!!

Maybe instead of the video tape, you could write her a letter. I wrote 4 letters..one to my husband and to each of my 3 grown children. I felt MUCH better after I'd written them.

I don't know if you can put this off. Who recommended that you do it NOW?

Please call your general doctor and talk to them about some anti-anxiety medication. It might be nice just to help you calm down some. I was given some because all the doctors thought I was too anxious. I thought they were nuts...who me?? I'm fine...I want to get this overwith....blah, blah. But oh, that one weekend when I went kind of loco.....they were GREAT to have....really calmed me down.

Keep posting. Vent away. That's why we're here.

Hang in there.......

Marguerite

 

[geebee]

Linda,

You have every right to be scared. You will be putting your life in the hands of people and then going to sleep. The loss of control is very frightening indeed.

However, keep in mind how dangerous things are that we do every day and never think about it. Flying, driving, walking up and down steps, all carry risks. We continue to do these things because they are important to our quality of life. OHS is the same thing - needed to stay alive and healthy.

You know that there are not guarantees but try to be comforted by the fact that you will be undergoing a surgery that carries one of the lowest mortality rates. The surgical team, machines and medications are so finely tuned that something going wrong is so very rare.

You will have so many years to spend with your daughter. Go forward with your surgery and know that, once you are through recovery, you will have a long, healthy life free of worry about your heart.

That being said, there is no reason not to leave a video or letter for your daughter. It is no different that making out a will to cover all the bases. Just think of how interesting it will be to watch that video once you are through the surgery.

 

[briansmom]

I cried when I read your post. I am on the other side of this - it is my son that is having surgery (3/12), I am petrified also. I don't know which would be harder. You are obviously a great mom. Take a deep breath, listen to your loved ones, listen to the people on this board who have been through this. My thoughts are with you.

 

[WayneGM]

Being afraid is understandable and normal. There can't be any guarantees but your age and relatively good health are valuable assets to help you through this. Now that I've been though it I take comfort in the fact that while not routine to me, this seemed pretty routine for the doctors and nurses that looked after me. Take care.

 

[dj/utvolsfan]

Hey there,
First off, I just want to say all your feelings are so very normal, so very human. What I'd like to say to you is with a little bit of help (especially from the knowledge I received from this site as well as the loving, emotional support of so many vr.comers), I found a peace settled over me about a week or so before my surgery. Prior to that miraclous moment, Like you I focused on the negative side of it all - such as not waking up, etc, leaving my family, leaving a life unfinished, on and on. Well, I realized I was fixated on the "what ifs" too much to be able to see the greatness of the "what will bes." I taught myself to knock those negative thoughts away one by one and I replaced them with the positives ones. I found myself within a short period of time feeling actually excited about OHS. I couldn't wait to feel better. I couldn't wait to start my new life. I couldn't wait to see what a healthy heart would feel like. I am so thrilled with my heart! I've gone skiing two weekends in a row and although I wipe out every now and again o ), I finally have the strength to get back up and enjoy the ride!
I hope you'll find the inner peace you need to face surgery. I will most definitely be thinking of you!
My very best to you!
Debbi

 

[Susan BAV]

Hi Linda -

I had a few thoughts pre-op along the line you are describing also. And when I did wake up, the first thing I thought was, "Wow, I woke up!" The second thing I thought was, "Now get that stupid vent tube out of my throat!" So I think I woke up fairly lively!

It is elective surgery because it's not emergency surgery. The former is highly more survivable than the latter. Emergent or emergency valve replacement is extremely dangerous. A lot of the valve replacement and recovery horror stories are related to situations that were emergents or emergencies. That's why you want this done electively.

I asked my surgeon what his mortality rate was with the surgery. It was 0%. I figured I could hardly do any better than that!

That said, I secretly wrote out my obituary and put it in a place where my husband would find it but only if the worst thing happened. So I do have an idea of what you're going through and I think probably a lot of people here can relate to some fear.

However, focusing on the positive [and thinking that not only are you going to survive but you're going to feel much better and be around for a much longer time] very well may help you to have a better outcome. Visualize success. But it also won't hurt anything to compose your thoughts and videotape them for your daughter and husband or write them down in a journal. I like journals.

The next thing is highly personal so I won't ask you; but let me try to tactfully say that if you believe in the Creator, pray to Him! I have a strong faith and found much peace and comfort in prayer. Many other Valvers have mentioned they did also.

You have several replies already so I hope it helps for you to know that you're not alone in your feelings. I hope everything goes really well for you, Linda. Take care.

 

[Bridgette]

Hi Linda

I know exactly where you are coming from - before my surgery in December last year, I was pretty scared of not waking up and being able to be with my two boys (aged 11 and 8) again. I actually cancelled one surgery scheduled for November as I just didn't feel able to go through with it - it was only a week after my exams were finished, and I was mentally and emotionally drained.
I did a lot of soul searching, and rescheduled the op - I thought if I don't go through with it now I probably never will, and where would that leave my boys?
I thought about them a lot, and consoled myself with the fact that if I did die during the op, they would have the love and support of my extended family (I am one of ten children), and of course, my husband and his family, to get them through their childhood.
I don't know what your family situation is, but I am sure your loved ones will be there for you and your husband and daughter no matter what happens. And, in all probability, given your age and good health, the outcome will be a good one.

Are you getting a repair or a replacement of your mitral valve?

Bridgette

 

[Phyllis]

Hi, Linda,
I put you on the calendar for the 9th so there is no backing out now!
You've gotten all good advice here. Concentrate on all the wonderful years you have ahead to share with your husband and your daughter and in good health too! Best wishes to you and may you find the peace that everyone speaks of as they approach their date of surgery.

 

[PJmomrunner]

Hi Linda:

When I was first diagnosed I set a date. Boom. Let's get this done. (The surgeon's office called me in for a second appointment to set me straight.)) Anyway, I thought all those things; It makes perfect sense to me to think those things. I happened to read today in People magazine (dentist's office) an interview with Steve Irwin's (the crocodile hunter) widow. She said she and the kids start off every morning watching videotape of Steve--they keep him part of the family. Now maybe that's not real healthy in the long term, but for those young kids to be able to remember their dad like that and be able to imprint him on their mind's eye is pretty wonderful, I think. Also, I'm a firm believer that the more prepared we are for the bad things, the less likely they are to happen.

I secretly wrote out my obituary

I hope you've burned that, Susan!

 

[PegB]

Hi Linda,

Sorry, but there's no backing out. You are going to be so glad you did this when you wake up in the ICU...and you ARE going to wake up. That teeny percentage of people who don't make it, are the elderly, the chronically ill, and the people who have a surgeon who reads "How to do OHS" in a book the night before surgery! There's going to be a lot of times AFTER your surgery when you will wish you hadn't done it as well, like when you want to pull open the refrigerator door and you don't have the strength!! It gets very frustrating, and then one day you realize how far you've come, and how much better you're feeling.

Think of this as doing it FOR your family, so they will have you around for a long time. You don't want to wait until you're too sick to have surgery. By all means though, write your letters, make videos, whatever helps. For some strange reason I cleaned like crazy my last week? You'll start feelin much calmer about the beginning of next month. I think one thing we all agree on here, is that it's not AT ALL as bad as you are imagining. You're going to do great, and come back here and help the others who are in the waiting room when they are scared.

You have several weeks yet, to pick our brains about absolutely ANYTHING that may be worrying you. You can talk about a lot of things here, that you can't talk to your family about, so let it pour out....just DON't cancel.

Big HUGS!

 

[akaShei]

Dear Linda

Dear Linda

My husband is scheduled for 2/26. He & I have the same worries you do. Our children are 10, 7 & 2. When he first found out back in December about needing this surgery now at 36 years old, he said "If I die, Nicholas (our baby) won't even remember me!" We just hugged & cried. Now reality has settled in some - this operation has a very high success rate & has become routine. He's young & strong & only mildly symptomatic. His doctors have advised us that the time is NOW, but he has also thought about waiting. I think that is natural, but he knows it would not be wise to wait & let things become much worse. I wish there could be a guarantee, too, but "only GOD knows" & we have to put this in His hands like we do with everyday life. Hope this helps!
Best wishes!

 

[Adrienne]

If this is any comfort to you, I had my surgery at 60 years old (and was otherwise quite healthy). When I asked my surgeon what the statistical risk was, first he said 1%, then he said (and I realized what he said could never be used officially) "for you 0%" (meaning 0 percent of dying from the operation). Well, you are a lot younger than I am, so I am SURE you are going to wake up!!

 

[the art den lady]

Hi Linda-

We're leaving today for my surgery on Friday. I have a coronary angiogram scheduled tomorrow.

I'm not saying I haven't had my moments, but this is out of my control so why worry? Who would think going to a mall would end one's life? (You'll have to look at the news for that story.) Living life is a risk, otherwise it wouldn't be worth living.

It's like getting on a plane and you're putting your life in the hands of the pilots who fly the plane, the mechanics who service the plane, the engineers who designed the plane, and the workers who put it together. Why do we do that? You hope the pilot got enough sleep, didn't have a fight with his wife, isn't hopped up on too much caffeine . . . There's so many variables in everything in life that if we thought about all of it, we'd go crazy.

Have the moment, move on and then start preparing. I just finished signing my will, a directive about my wishes for life support and organ donation, account info. for my husband (I do the bills), and my obituary. Is that morose? Not at all. We're ALL going to die someday and I'm assured that whether I stay or go, it's all good. One way I'll be able to raise my 11 year old daughter and the other way I'll be with Jesus. I have to trust my daughter will be fine, even though she does need her mommy. If God has a reason for me to be with Him now, so be it. He know the big picture.

I know this is a bit much, and I'm getting way too philosophical, but hey, I'm entitled. What really got me in a great mindset (attitude IS everything!) was reading the book, "End of the Spear" by Steve Saint. (Plus, "Beyond the Gates of Splendor" which is the first book about this same story). It's about 5 missionaries who had an amazing opportunity, prepared for the worse, yet still the outcome wasn't what they expected.

Well, I've had my ramblings. Please enjoy this experience (or at least freak out less) and get out your bible or ask to be put on prayer chains. (I'm normally not this forward, but hey what have I got to lose?)

Good luck on your upcoming surgery Linda.
Jackie

-------------------------------------------------------

1995 - TIAs (mini strokes) started after birth of my daughter, Aspirin started.
1996 - BAV w/mild stenosis diagnosed.
2003 - PFO (hole in heart) fixed w/Amplatzer. 3 catheters up the legs.
2003 - FVL (clotting disorder) diagnosed, 10 mg daily Coumadin started.
2/16/07 - Surgery for BAV w/severe stenosis, Mechanical Valve, Dr. Suri, Mayo Clinic.

Expect the best. Prepare for the worse.

I intend to live forever -- so far, so good.

"Life is great, life is grand. Life is like a rubber band." - Jackie Beach

 

[MaryC]

Linda,
I can certainly relate to your post. My surgery is 1 week from today, 02/21! I have thought and said the same things you are saying but what keeps me moving forward is knowing if I don't do something about my mitral valve, I will certainly end up having problems that will take away from the quality of my life. I am in what I gather is a unique situation where I have several siblings to provide living examples of what happens if I try to ignore my condition - including a brother who died from not doing anything. This forum has provided me with a lot of positive examples of what the outcome can be for surgery. I have done everything to control what I can - finding the right surgeon for me and making sure if the worst did occure, my family is taken care of.

I understand what everyone means when they say the waiting is the worst part of this. The mind can come up with some really negative outcomes, given enough time! You and I need to work on overlaying those thoughts with positive ones! (Easier said than done sometimes, right?!) Good luck in a few weeks.

 

[LindaVA]

Thanks

Thanks

Thank you to all of you who posted. I really appreciate the forum to freely vent because certainly my daily life isn't providing me the time to or the opportunity to do so. Did you feel kind of bitter that your obligations and life goes on right up until the operation and that you don't have time just to sit at home and feel the emotions you want to feel? I kind of feel that people are still piling work, social, etc obligations on me not realizing how stressed I am over this. Like someone handed me this thorny project at work that needs to be solved in the next two weeks and in my mind I'm thinking, are you freaking kidding me? I'm going for OHS in three weeks, I don't need this right now. Well, I guess life stops for no one.

In any event, no backing out. Your all right, its fixable, I need to feel confident and put it in God's hands. God bless you all, your stories inspire me, especially briansmom. As unnerving as it is for me, I don't know how I would deal if it was my child.
L

 

[Marguerite53]

Thank you to all of you who posted. I really appreciate the forum to freely vent because certainly my daily life isn't providing me the time to or the opportunity to do so. Did you feel kind of bitter that your obligations and life goes on right up until the operation and that you don't have time just to sit at home and feel the emotions you want to feel? I kind of feel that people are still piling work, social, etc obligations on me not realizing how stressed I am over this. Like someone handed me this thorny project at work that needs to be solved in the next two weeks and in my mind I'm thinking, are you freaking kidding me? I'm going for OHS in three weeks, I don't need this right now. Well, I guess life stops for no one.


L

Maybe some of your anxiety is stemming from the workload. Anxiety takes on a life of its own when it gets ramped up....kind of an all encompassing thing. Personally, I think you need to go to whomever gave you that pile of work and say, very kindly, "you know....it's a bit difficult for me to concentrate effectively on this very important project with my OHS being only weeks away. Could I get some help on this? SInce I'll be gone for awhile after my surgery, wouldn't it be a good idea to bring someone else in on this?" People really do not know about the drama of OHS unless they have had some experience with it. You DO need some time for your thoughts. But you need to ask for it. I honestly think people will understand better if you communicate your needs at this point. Keep your explanations simple and brief, but allow others to offer their support. Most people want to help. They just don't know how unless you suggest it to them.

No one gets everything done that they hope to get done before surgery. Really......has anyone here??? There's always some nagging little thing that they had hoped to do...just in case. So do take a few minutes away from everyone (even if it's driving to some look-out point away from your usual commute...parking, turning off the engine....lock the doors.....turning off your phone.....) and sit with a pen and paper and list the things you must do in the next few weeks. Prioritize them. Mark down how many hours each one will take. Maybe you will see that there is not that much to do, or that there is no possible way you can do half of it!!! Whichever....plot out a little map for yourself.....this is a journey. You need a map.

Then put yourself on the front burner, as they say. You MUST advocate for yourself. No one will fault you. It's a huge surgery!! You will come through it fine, but it is still a big thing. You need to take care of YOU first these days.

Keep venting....we're getting somewhere, aren't we??

Marguerite

 

[Karlynn]

I understand your fears. My kids were 5 and 7 when I had my surgery. I was pretty sick and physically depleted going into it, so I was really worried I wouldn't wake up. But I did - and life is good.

If you are having a hard time with this, ask your doctor for a little something to help take the edge off. Many of our members have done so.

Best wishes.

 

[alex c.]

Linda, theres not much more I can add to everyone's advice, but don't back out! You will feel worse if you do. Right now, you are in charge and you will go in it prepared and ready. If you wait, you will be at the mercy of your situation at that time. I also had bad feelings before my surgery back in Nov. I was pissed, sad, embarrassed etc. To make matters worse, I had set my mind on getting a valve my surgeon had never implanted. Not 1 valve, 2! Many people told me it was a bad decision and my risks were increased and I was crazy. I did my homework here though and got lot of support from the members. Needless to say, everything came out well and I am getting better each day. I am so happy I got it done when I did and so will you!!

 

[Georgia]

Linda - we've all been there. This is an approach/avoidance thing. I'm sure I'd have been much more ambivalent about the surgery if I hadn't been so ill by the time I found out I needed my valve replaced. I was immediately put on disability for the 3 weeks prior to surgery.

One thing to remember - you'll be dead for sure without this surgery. So would I, and all of us here. This is life saving - not just recommended for improvement of quality of life (altho it's that, too). You would not be allowed to have the surgery if you surgeon hadn't determined that the risk of not having it was greater than the surgical risks.

There are those here who had to fight for the surgery - they had ultra-conservative (or bad) cardios who thought they really didn't have much wrong with them. Be thankful you've had stellar and proactive cardio care.

If you're too tired to work during the run-up to surgery, ask your doc to put you on disability. They don't want you to stress out and deteriorate prior to it. I'm sure with young kids that you're at the end of your tether. This is not a bad thing to do - we can only be expected to do as much as we can, particularly when we have physical limitations.

PLEASE ask your doc for a tranquillizer. Chemical help is not to be sneezed at during this time. Once again, stress is a killer for your heart - and it's working overtime with the defective valve.

Take the time between now and the surgery to do the good stuff with your hubby and kids - movies, short vacation, shopping, etc. All those things will remind you why you're having the surgery. Focus on summer - your recuperation will be behind you and you'll have few limitations.

And stay with us. We've all been scared to death and we understand. We'll answer your questions and get you over the hump.