Mitral valve repair/replacement April 28th

[a67emmamom]

Recently diagnosed at 42 years old with MVP with severe regurgitation. I thought I was just getting older, and slowing down naturally. Shortness of breath and fatigue is horrible. Scheduled for an attempted repair or replacement at Mayo in Jacksonville, April 28th.

I am VERY anxious and having morbid thoughts. I keep thinking "this could be the last movie I will ever see.... book I will read..... beach I visit..." and so on. Did anyone else do this?

How did you all stay calm and positive on the way to the hospital. Obviously the alternative to fixing the leak is not acceptable either! I am really scared.:frown2:

 

[Greg a]

Recently diagnosed at 42 years old with MVP with severe regurgitation. I thought I was just getting older, and slowing down naturally. Shortness of breath and fatigue is horrible. Scheduled for an attempted repair or replacement at Mayo in Jacksonville, April 28th.

I am VERY anxious and having morbid thoughts. I keep thinking "this could be the last movie I will ever see.... book I will read..... beach I visit..." and so on. Did anyone else do this?

How did you all stay calm and positive on the way to the hospital. Obviously the alternative to fixing the leak is not acceptable either! I am really scared.:frown2:

a67emmamom, a heart felt WELCOME to our OHS family I am adding you to the VR calendar and YES THE WAITING IS THE WORST PART, there is a wealth of knowledge here for the future .....


-Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

-what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

-what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

-Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[ejc61]

Recently diagnosed at 42 years old with MVP with severe regurgitation. I thought I was just getting older, and slowing down naturally. Shortness of breath and fatigue is horrible. Scheduled for an attempted repair or replacement at Mayo in Jacksonville, April 28th.

I am VERY anxious and having morbid thoughts. I keep thinking "this could be the last movie I will ever see.... book I will read..... beach I visit..." and so on. Did anyone else do this?

How did you all stay calm and positive on the way to the hospital. Obviously the alternative to fixing the leak is not acceptable either! I am really scared.:frown2:

Hello,

I was 47 with MVP with severe regurg but not sympthomatic. Never had surgery before. The goal was to repair first and replace with mechanical if not repairable. Actually, a few days before surgery, I changed surgeons within a practice when I decided to go robotic vs. mini thoracotomy through the ribs. There were no other cardiac concerns. I was comfortable with either technique. I wouldn't want to make a habit of changing surgeons at the last minute however. I had some odd thoughts as well. Just keep positive thoughts. Don't engage in negative situations with people. Just do what you do every day. It worked out very well for me. I drove myself to the surgery (with my wife). Listened to my MP3 player until it was time. Keep us updated.

 

[LeakyUK]

I am on the max dose of fluoxatene & almost have the fears under control, but yes I have the same thoughts with every day out with the family. I waiting for a date for AVR. I am focusing on two things - some 'personal' rewards post surgery - in my case model steam powered traction engines and a model railway layout, and the fact that every procedure I have had the last few months has been much smoother than I had feared in advance. I am 58 and insisted I was just getting old when my Aortic regurgitation worsened.

 

[scott.eitman]

Recently diagnosed at 42 years old with MVP with severe regurgitation. I thought I was just getting older, and slowing down naturally. Shortness of breath and fatigue is horrible. Scheduled for an attempted repair or replacement at Mayo in Jacksonville, April 28th.

I am VERY anxious and having morbid thoughts. I keep thinking "this could be the last movie I will ever see.... book I will read..... beach I visit..." and so on. Did anyone else do this?

How did you all stay calm and positive on the way to the hospital. Obviously the alternative to fixing the leak is not acceptable either! I am really scared.:frown2:

The best way I found to stay calm is to talk (post) with people like us. You will find that we survived OHS and are living proof that this has improved our lives. From reading many posts, it seems that many of us stayed focused on what we can control, not what we cannot. In other words, focus on preparing yourself for surgery (are documents in order), do some work on the house or hobbies, focus on what valve to get if repair turns out to not be an option, who is the surgeon and is (s)he the best for you...

Stay well and positive.

 

[Jkm7]

Your anxiety and nerves are so like most of us here. All the things that run through our heads but I have to say I never, through two OHS in four years, allowed any room in my head for possible demise. I knew I would survive the surgery each time and never doubted I'd do fine. That is not to say I didn't have loads of anxiety and angyst but I knew I'd do well and I have.

Try to chase the negative thoughts away. This surgery, while very serious, has huge success rate. For the surgeons, the PA's, the techs, the nurses...... it's another day at the office. They do it everyday and that's just what I wanted. They've seen it all and know exactly how to cope with whatever may come up. For a large percentage of us, it goes smoothly, we are well taken care of, we go home and have successful recoveries.

Make up your mind that will be you, too.

We're here whenever you feel like talking or have any questions.

Best wishes.

 

[Jeff Edmonton]

I was sure to use up all my reward points, the world was coming to an end.

It is a very scary surgery but the problem has been found and you MUST have the surgery to live!
I looked at it as just another surgery, made my choices and did not look back.
At your age you will recover quickly.

Remember that these people do this every day and they all take there jobs very serious. The rest will be up to you, it is not a terminal diagnosis and they now know more about the heart than just about any other organ in the human body. If you want something serious to go wrong, the heart is the best bet!

It is the patients with multiple health issues where the surgery becomes troublesome. Stay positive and cherish every day as it is your last is not a bad thing.

I wish you the best in your surgery and pray that everyone has a good day in the OR.
May the Gods be Kind!

 

[a67emmamom]

Thank you all

Thank you all

for the informative posts. I almost wish I had been whisked away for surgery as soon as the TEE showed how serious the problem was. The waiting in anticipation has been maddening! Have read through posts and "stickies" all day. What a wonderful forum. One question I haven't found is "how much information to share with my five year old?" She has never spent a night away from me. Any advice? And thank you all again for your replies.

 

[Freddie]

Hi and welcome. There should be a few thread/posts in regards of telling children about the surgery, the topic has come up. Maybe someone more handy with the forums/searches will be around shortly to help you out.

Here's just an idea to help you pass the time and to get your mind off your up coming surgery. Do some baking or maybe a lot of baking and cook some frozen meals. One thing to keep in mind that reaching and lifting will be a painful action - even opening the fridge door might be a challenge (that's no lie) once you are home. Will there be anyone there to help you for the first week or so after your home?

 

[debster913]

Welcome! I wish you the best in your surgery. I know how hard it is to stay calm, but try to keep positive thoughts as you enter this new phase of your life. Think of it as a new journey--relax, and anticipate a new beginning!

Best,
Debi

 

[Johan]

The waiting is the worst but you will soon be over this mountain and I wish you an uneventful surgery and smooth recovery...

 

[Ruth]

Welcome.

I tried to stay focused on the positive, how very thankful I was to live in a time and a place where my heart condition could be healed. When I told people about the surgery I focused on how successful the treatment is these days and how lucky we are to be in the hands of talented surgeons who can fix our hearts.

It is what it is. The alternative, no surgery, is infinitely worse. Give yourself a minute, maybe two, per day to think about the what-if's and then take a deep breath and refocus on the positive. It is what it is.

Every one of us has walked this road and empathizes with you. Don't hesitate to ask questions and share your concerns. The people here are fantastic.

I wish you all the best for a successful surgery and an uneventful recovery!

 

[Ruth]

Oh, regarding kids, I'll just share my experience. My boys were 12 and 15 at the time. They came to see me in the hospital the day after surgery, just hours after I had moved to a "regular" room from CICU. In 20/20 hindsight, I wish they hadn't. It meant a lot to me to see them but I think it kinda freaked them out. By day 2 I looked a TON better and was really up for visitors. I wish they had come for the first time then. Of course that would have meant that they wouldn't have seen me for a day and I can't predict what impact that might have had....

 

[LubDubLubDub]

a67emmamom -- What EVERYONE said here is correct. I may not be a great comfort to you, but I had to stare the facts in the face during my three month wait before my surgery... 1) I was going to be dead without this surgery. 2) I considered myself "lucky" that my bad valve didn't just quietly kill me one night. 3) I thanked God that I wasn't going through this anytime before 1970, when heart surgery was non-existent. 4) I had two good months to get my affairs in order... I cleaned out stinky drains, I did some painting, changed the oil, finished off those chores I really never wanted to do. 5) I had two months of REALLY enjoying the beautiful fall going on around me and tell God thanks for the new, better days to come.

(So you know, I'm swimming 2000 yards a day. My surgery was Oct 2009.)

 

[Mileena46]

I can remember the fear! The total horrible and all consuming FEAR! I had people praying for me because of the fear. I didn't find this place until after surgery. I had about a 3 year wait once I knew I had to have surgery....but once my valve became bad enough it was sudden and I only had a few days.....it was kind of a shock to find out that once I was in the hospital and waiting, I became very calm and very resigned to what was going to happen. It might have been that I was soooo tired and sooo sick! For several weeks I had been ignoring my symptoms and trying to just go on with my life....but once it gets bad enough....there is no denying it.

I know how you feel, its a lot to wrap your mind around. You will be ok, you will recover! and once its all over, then you can come on here and help someone else deal with having to face what you are facing now!

Mileena

 

[Marty]

All will be well

All will be well

Recently diagnosed at 42 years old with MVP with severe regurgitation. I thought I was just getting older, and slowing down naturally. Shortness of breath and fatigue is horrible. Scheduled for an attempted repair or replacement at Mayo in Jacksonville, April 28th.

I am VERY anxious and having morbid thoughts. I keep thinking "this could be the last movie I will ever see.... book I will read..... beach I visit..." and so on. Did anyone else do this?

How did you all stay calm and positive on the way to the hospital. Obviously the alternative to fixing the leak is not acceptable either! I am really scared.:frown2:

How well I know how you feel. I had the same mitral lesion you have. It must be fixed or you go down into heart failure. Its fairly slow and drawn out but no fun at all. I remember the old days-the heart would get bigger and bigger till it filled almost the entire chest. I hope you are able to get a perfect repair. My surgeon said my valve and the cords that held it were too far gone for repair and he installed a mechanical St. Jude. It has worked flawlessly and taking warfarin is no problem at all. The years since my surgery have been the best in my life. I wish the same for you. Marty

 

[Tina Conroy]

familiar territory!

familiar territory!

Hi,
I experienced the exact same feelings as you are going through. last book, last movie, last steak last time il see this and that and i refused to get new tires on my car because i was convinced that i woudlnt make it through the op! well i did and 7 months later im doing really well with my new mechanical mitral valve. I had severe regurgitation, stenosis etc brought on my rheumatic heart disease as a child. I got to the point before surgery where i was bored with feeling morbid and i decided instead to think about places i wanted to visit, movies i wanted to watch in hospital, books i wanted to read and everytime i had a negative, scary, freaky, morbid thought (which are completely normal!) I would replace it with something practical or positive. I wish you well and expect to see you back on here soon! :thumbup:

 

[paige]

Hey Mom,

I am a 45 year old mother of two (twins, age 11.5) who had MV repair just last Monday. I had severe regurgitation as well. I knew that I had to be very positive for them to feel comfortable with what would be happening to me, so I focused on the fact that people have their valves repaired/replaced everyday, and the incidence of mortality is extremely low. My one son was scared that I would die. I didn't want to get into that topic with him (another kid at school mentioned that "people can die in surgery")but I was able to tell him that my doctor had never had a patient die from heart valve surgery. Since your child is so young, I probably wouldn't share too much beyond the basics. Mommy's heart doesn't work right (or just mommy isn't feeling well so she's going away for a few days so the doctor can fix her). I had every intention of having my boys come visit me the day after my surgery, but I was making such good progress (had surgery Monday at 8:00 a.m. and was home on Wednesday at 2:00 p.m.) that they never visited me. I knew I wanted to wait until I looked "normal".

With regard to the feelings of death, I think we all have them, even though they may be very fleeting. I tried to focus on the fact that I was going to be fixed before it could fix me. THe fact that I was asymptomatic, but had severe regurgitation scared me. I came to the point where I was actually anticipating getting it taken care of so I would be fixed and not wondering what might happen suddenly, without warning.

The only times I cried were when the doctor initially told me I should have surgery in the next six months and the day I actually had it (about three months time). When I let go of my husband's hand and they wheeled me into the OR tears began falling. The anesthesiologist looked at me and said, "she needs some happy juice". About five seconds later I was out cold!

I'll be thinking of you this Thursday.

 

[Michelle D]

I was terrified for a few weeks before surgery but the couple days leading up to it I felt the calm before the storm. I was accepting my fate, knowing I choose the best hospital for me and that there was nothing else I could do unless I wanted to wait and die from congestive heart failure, which I was pretty close to doing. My secret to staying pretty calm was xanax, I was in the hospital for 4 days before the surgery and they gave me xanax injections every 4 hours I think. That made a world of difference, and I generally hate xanax during everyday life in which things need to be done and you don't have time to get zombified, but in this situation I didn't care. I also watched Inception right before my stay and so I keep telling myself that I was just in a dream.

 

[a67emmamom]

Thanks again off to surgery in the morning!

Thanks again off to surgery in the morning!

Thanks you all for your support, will be reporting to Mayo at 5:45 in the morning. Looking forward to sharing my story "on the other side of this mountain"!