New member having surgery January 10th- need some good advice

[jhusker2]

Hi all,
First and foremost, let me start by saying that the best thing prior to my surgery is finding this site / forum.

I just had my 40th birthday in September and after a routine physical at the end of October (2010), I was diagnosed with a significant murmur- which led to further tests and diagnosis of a severe leaking mitral valve. I knew I had a mitral valve prolapse early on in my life (childhood) and had a routine echo in the mid 90's that re-confirmed there was only mild regurgitation with the prolapse. That said, I've always hated going to the doctor's office (even for a routine physical) because of my hatred for needles, etc. and never really thought twice about having a routine check due to not have any health problems or symptoms. With this neglect and carelessness, I am now facing OHS January 10th, 2011. I had no idea that the severe leakage could lead to heart failure.
The cardiologist originally thought I could have it repaired and done robotically, but according to the surgeon I have severe calcification on the valve and he recommends median sternotomy to attempt a repair and removal of the calcification. With this in mind, I have changed the surgery date 2 other times due to the lack of preparation and not knowing what to expect (after all, I still feel healthy).

That said, I’m hoping that some folks on this forum can speak of their experiences (that have had median sternotomy) in a positive light and help me prepare a positive mental state going in to surgery on 1-10-11. My concerns have been the drainage tubes, the pacing wires, the breathing tubes, etc, and worst of all not waking up! Please keep in mind that the only surgeries I’ve had prior were my wisdom teeth removed and tonsils taken out (when I was 2)- Lol. Thanks in advance for all those that elect to give advice!

Jason

 

[kfay]

Jason, Welcome to the site. Sorry that you now find yourself needing surgery, however, you need to just jump in head first and get it done. Postponing it isn't helping your heart any and in fact may be causing damage that isn't going to be able to be repaired.

I've had two sternotomies, the first when I was 17 and the second when I was 45. I didn't find either of them to be nearly as bad as you are probably imagining them to be. They weren't particularly painful, more uncomfortable. Pacing wires are tiny, not a problem for me coming out. Chest tubes more of a problem, but had a great Dr. pull them and he had me hit the button on my pain pump 5 min. before hand, take a deep breath and they were gone. Being intubated seems to be something everyone worries about the most, but honestly, you are so drugged up, even if you do get freaked out about it, you won't remember it! Both times I stayed intubated for about 20 hours, which seems longer than some on here. I just make myself listen to the machine breath and breath with it when I'm awake, but that's short lived because then I'm back asleep.

I don't know how many of our stories you've read on here, but very, very rarely will you read of someone on here who just had excruciating pain, or couldn't take the tubes, etc. We usually build it up to something much worse in our minds than what it turns out to be. If your worried about not waking up, don't have the surgery done. Seriously, you need to have this done, so just get it over with.

Best of luck to you. You'll be fine.

Kim

 

[bdryer]

Jason

Good, someone to share January hell week with!

Don't worry, you will wake up. That's their #1 priority, that being you bank rolling their next paycheck! He-He!

Welcome !

 

[neil]

hi jason, agree with kim totally, its a lot worse in your mind than it actually is........and this is from the worlds number one cry baby when it comes to pain

 

[Greg a]

jhusker2/Jason, I have added your surgery to our VR public Calendarand i ould add a heart felt WELCOME to our OHS family glad you are getting the information that you are seeking and there is swealth 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[/

 

[Jkm7]

Hi Jason,
So sorry you have this issue to deal with but so happy you found us.

I had two OHS in four years (the second being almost three years ago) and like you, certainly did not relish the idea nor does anyone (sane) person I know. Most here would say the anticipation and dread and anxiety was actually worse than the reality. This surgery is really very safe and for a young person in otherwise good health, the success rate is huge.

My nurses at Mass General firmly stressed to me that pain control is as important to them as temperature, blood pressure and other vital signs. They kept me comfortable throughout all my days in CICU and step down unit. I never had to wait for pain medication when I requested and it was all manageable, for me.

I was (un)lucky enough to have three drainage tubes the first surgery and got the prize with four my second surgery. I don't know how they decide how many to place but four tubes stunned me. The fact is within 24 hours post op, with four tubes still in pace, my nurse and husband put the drainage containers on a wheelchair and I was walking in the hall and was comfortable doing so. Hard to imagine, I know, but nevertheless, true.

The heart teams in these heart center call OHS 'another day at the office' and that is just how I like it. While it is earth shattering to us, I llike it just fine that for them it is routine and they've seen it all.

You are near one of the finest heart centers in the country and have access to Cleveland Clinic. There is nothing they haven't seen and handled before and you'll do fine. These surgeons so fully understand our anxiety and concerns and most are so caring and kind and intuitive to what you need from them and the best way to 'handle you'. My surgeon (second time around) sensed I needed to feel his hands on me while I was awake. My first surgery was emergency and I barely knew him. When I returned for the second (a valve replacement), he held my knees through out conversation with my husband present in exam room. His kindness and gentleness and sense it would give me comfort to feel his hands did so much for my peace of mind. Just for him to hold onto my knees while we spoke and I dangled off the edge of exam table.

Just 'suck it up' and do it. There really is no choice. If you do not have this corrected soon, it will kill you. That is not a viable option. We are so lucky to live in a time when we have the choice and ability to be fixed. It's tough stuff but you can do it...... After making the decision and setting the date, many of us reach a place of peace where we accept what is necessary and put our trust in our very capable surgeons and their teams and we find a place of acceptance and eagerness to just get it done. Hopefully, you will too.

Let us know how we can help you through this.
Only those who have walked the walk truly understand. Our friends and family try and mean well but they cannot 'get it'. Heart surgery really is unlike almost all other.

 

[Adrienne]

Calcification for me too

Calcification for me too

Hi Jason, I also had a lot of calcification (in my case due to endocarditis the year before). To make a very long story short, I had a full sternotomy. We had talked about a minimally invasive procedure, and for that matter, the hospital had just gotten the da Vinci robot, but they had not used the robot yet for a patient, and my surgeon said that with all the stuff that had to be done, he had to open my chest. In any case, he was able to do a complicated type of repair of my mitral valve.

The breathing tube was not as bad as I feared since I was only awake for about five minutes. I don't know when they took out the chest tubes, but they tried to take out the external pacemaker leads the last day. They got one out, but ended up leaving the other one in and just snipping it off because they did not want to pull too hard (apparently this happens from time to time).

 

[buncle]

I remember waking up with breathing tube still in and was upset because that was my #1 fear. And the anthesiologist said he would have it out before I woke up.Well I had issues in surgery and they left it in.I went right back to sleep after realizing it was still in.Next thing I remember was the nurse saying my name and telling me to cough on 3 that she was going to remove it.I didnt have time to be scared and it did not hurt. It was over in 2 seconds.The drainage tube came out fast too.I felt some pressure but, no real pain.Pacer wires felt odd coming out and was surprised to see how long they were.But,again no pain.Foley-same thing - fast and easy and no pain.I was on no or very low pain meds when these events happened over the course of a few days.The pain was my back.I guess they spread you open to where it makes your back muscles painful.A few massages and most of that was gone in a few days.I dont want you to think it is a walk in the park but, wont be near as bad as you think.Best of luck.

 

[malibu82]

hi there and welcome

i had the same concerns as you. i was afraid of waking up with the breathing tubes. i do remember waking up with them in, however i don't remember them taking them out. so that part was not nearly as bad as i thought it would be. the pacing wires grossed me out, i was so scared for them to pull them out. didn't feel a thing when they did! the drainage tubes kind of pinched when they were pulled out, but totally bearable. and best thing you don't feel any of these things when then are in...except the breathing tubes....

i was deathly afraid of not waking up. it was my worst worst worst fear. i had much anxiety about it. but the morning of surgery, i kind of went into a weird mind place. i was able to say goodbye to my children, ride to the hospital with my family, walk through pre op things without thinking about what really was going to happen. i didn't break down until they said they were going to give me something to relax me. because i knew i would no longer be in control. i started crying and told my mom i didnt want to have surgery and why is this happening blah blah blah. then i was fine again, and as i was being wheeled back i was giving instructions to them on how to watch my babies while i was gone!

best moment of my life was waking up with those tubes down my throat, because i knew i had made it through surgery

 

[jake]

Welcome Jay

Welcome Jay

It’s kind of funny how, looking back on when I had my surgery a few weeks ago, I felt like Malibu did almost blow for blow. It was kind of surreal!

Now that I am post-op, it’s almost like making a long drive somewhere you don’t want to go. The ride there seems to take forever, and the ride back seems to go very quickly.

Jay, all I can say is that you’re going to be just fine! Everyone has some little thing or a few issues that will go wrong or some little complications here and there a few set backs now and than, but your really lucky. Like me and all of these other people, you found a great resource for support and believe me, if not for the great folks on this support site, I shutter to think of how many bad decisions I would have made when I had my surgery. Having things ready when I came really helped us and we got that info out here. I disqualified at least two surgeons because of the questions I got out here and believe it or not, had I not made the inquiries I did from things I learned out here, I would have likely gotten a new heart valve which I ended up not really even needing.

Anyway, welcome aboard and you’re among friends. Most of us have all been there and back and it’s OK. I’m home recovering and still come out here to post questions and things I have learned. Please take full advantage of the resource and know that many of us are thinking about you and throwing positive thoughts your way.

 

[normofthenorth]

I had the "advantage" of 3 prior surgeries pre-OHS -- two hernias and an Achilles-rupture repair. I guess I was lucky, but the full sternotomy was by far my LEAST painful of all four! Don't ask me how, or why, but neither the sawed-through sternum nor the good-sized incision actually hurt (except when I coughed or made a bad "move", of course!). The only post-op narcotics I ever had was one shot of Morphine just before they yanked out the drain tubes (2 of 'em), and I bet I didn't need that one, either. I took maybe FIVE Extra-Strength Tylenols, until one of the surgeons said I didn't have to if I didn't need to, so I stopped.

I wished my wife and I had practiced communicating by charades, so we'd be half-decent at it when I had the @#$%^& breathing tube down my throat and felt compelled to communicate! It also didn't help that I felt 100% aware and up-to-speed, but I was actually about 5-7 seconds "retarded" compared to the people around me! I was very glad to get my "voice" back!

Having every part of your body connected to something or other is definitely "interesting", but having one part DISconnected every few hours for the first 2 or 3 days is a joy. It gives you a constant series of "milestones" on your pathway from the incredibly invasive surgery back to normal life. I don't want to make it sound like a walk in the park, but when it's happening, you just go along with it. And if it goes smoothly (as mine did, touch wood!), the progress is amazingly fast.

I think it was late on my second post-op day (surgery was at noon) that I was disconnected from everything EXCEPT the 12 EKG leads (hooked up to a battery-powered transmitter, in a little bag over my shoulder), plus the (usually disconnected) IV in the back of one hand, plus the tiny (but long) wires going in my chest all the way to my heart (yee-yikes!!), and I was free to walk around the Cardiac ward. First with a big "walker", then (the next day) without.

I think it was the next morning that they put waterproof plastic and tape over my wires and let me have my first shower. Delightful!! From then, I was just counting the hours, and the rotten meals, until they let me go home!

I also had the "advantage" of having had some heart-problem symptoms just before my surgery. That's an advantage because now, 4 weeks post-op, I'm a bit LESS fit in the cardio department than I was the morning before my surgery. If I'd been 100% fit (as I'd been a month or two earlier), the relatively slow cardio recovery might be driving me nuts now. There are reasons to have inevitable valve replacements earlier rather than later, but I think it can also make the recovery more difficult psychologically. Some people are more prone to those difficulties than others, and there are tips and tricks to help "win the mental game", even if you are.

Some people have lots of pain from this incredibly invasive surgery, but for many or most of us the backaches or stiff necks or other ancillary "bothers" actually loom larger than the actual pain of the slicing and sawing.

 

[bigsidster]

Welcome JAY-----take the advice from all the above and work with it.I strongly recommend that if you can see a massage therapist a day or two before surgery ,that you get a good back , neck and shoulder massage.This seems to be one of the biggest complaints post surgery and maybe a good massage pre surgery could lessen the effect by loosening up the muscles.Good luck.

 

[DebbyA]

Hi Jason,
I'm glad you found the forum--welcome.
At 60, my hospital history was pretty much like yours. I got a lot of comfort from reading here, but also learned some things to worry about, like the wires, tubes, etc. My own experience was that NONE of those were a problem. I credit the fact that I had my surgery at a hospital with a dedicated cardiac center, so the entire staff was experienced in caring for cardiac surgery patients. My excellent surgeon had told us "All I've done for 28 years is cut and sew. What has really improved is the aftercare."

About not waking up, I'm a gifted worrier, but just decided if I didn't wake up, I wouldn't know about it anyway.

Many of us reached a state of peace and acceptance by surgery day, and I hope you will too. Be sure to ask any questions.

 

[njean]

Dear Jason,

Just wanted to welcome you to this wonderful community of caring individuals who have been there and done that!

I've been under the knife 3 times now and fixing to do it again! Doesn't get any less scarier, I can assure you of that! But, you must keep trying and have lots of faith in your doctors and pray for the best outcome!

Don't waste precious time worrying about the breathing tube, the drainage tubes! Keep in mind that they will be removed and that they won't seem as bad as you imagined them to be! We got through it, so can you!

You are still young, this is your 1st and hopefully your last OHS, so I have no doubt that you will do just fine!

We will keep you in our thoughts and prayers!

 

[jhusker2]

All,

Thanks to everyone for their kind words of encouragement and what to expect. I really appreciate folks taking time out of their day to make me feel better. Words really can't can't express how appreciative I am to have found this site with so many good people involved!

Jason

 

[Philip B]

Concerns?

Concerns?

Yeah, this kind of surgery is tough to wrap your head around when you haven't experienced much in the way of symptoms... been there done that. I've no doubt that most everyone here has faced all of the same concerns you are worried about... i.e. the breathing tube, chest tubes, pacemaker wires etc... Coming to grips with the things that scare you is something you need to do because further delays in getting your valve fixed could present a dangerous senario.

Facing the surgery terrified me beyond belief. The unpleasantness of the breathing tube scared me. Dealing with chest tubes and pacemaker wires were no fun either.

There are lots of unpleasant issues that individuals who have valve replacement surgery face. The good news is that the unpleasant stuff passes.

-Philip

 

[Dexter Bob]

Hi Jason!

I am coming up on my 1 yr. anniversary from OHS and your fears are just what I experienced. The breathing tube was a big fear for me, but until I read your post I hadn't thought about it since the RT said "cough on 3"! As others have said the tubes and wires are no big deal and were painlessly removed. Even the catheter removal by my pretty nurse was a snap. I was pleasantly surprized by the lack of pain in the chest area and refused most of the pain meds offered because I didn't have any! The attention you will receive from the Cardiac Care folks will be great and I bet the most trouble you will have is trying to eat hospital food!:thumbup:

 

[mac]

Hey Dude!!!!!!

Welcome to the club, in no time you will be posting on post op helping other pre op scared people. I'am 13 month post op....LOL...shouldn't even be called post op anymore. More like, did it really happen. You will have so much to look forward to. Sucks to sneeze try not to...I mean really sucks. Enjoy post op rehab. if you can do it. Buy a good stationary bike for inside. Can't always walk in the winter. Loved my bike, now I snowshoe, rockclimb, bowhunt......ya da, ya da, ya da...you get the point....13 months post op.
Removing of the tubes is minor....dude, you are alive, be glad this minor pain can be appreciated knowing that you will be soon out of the hospital. No chest bumping 3 week after surgery during a Packer game....LOL....only hurt for awhile.
Docs know what they are doing so relax. Had mine done at Mayo ( AVR ) and I think they do 5 or 6 replacements a day, Cleveland Clinic even more. Your guy is I'm sure very well into it. something I did was watch a replacement from the university of Houston on U - Tube. It really helped me to see how easy it was and that all cardio docs really got it together.
Anyway, in 3 month I was doing pushups, bought a Bow flex and doing 200 lb now no problem. Bow hunt and pull 65lb with not a twinge in my chest. The main thing is to be cool and not to rush recovery, they say only lift 10lb for a period of time DO IT!!!!! don't cheat on anything, it will only set you back.
Hey, good luck, not a problem..........I expect to be hearing from you POST OP!!!
Later, Mac, from the sunny shores from Lake Superior

 

[scott.eitman]

Welcome aboard.

Keep in mind, you have 7 more days and it is only 4 hours driving to Cleveland. I visit patients at the CCF once a week. I am amazed at the results form the robotic surgery. Not to add confusuion, but a 2nd opinion can't hurt.

As for surgery, those are good worries. It is not fun, but life with a healthier heart is!

Scott

 

[epstns]

Jason,

I think you've gotten the best advice from everyone here. I say that because I will be only about 7 or 8 weeks behind you. I've been waiting here and learning for over 8 years now, and the kind of advice I see you've been given is what helped me to get this far.

Stay in touch -- I will be watching your story to help me to get ready. . .