surgery closer than I thought

[Enudely]

Well, I had my echo and my aortic valve inssuficiency has gotten much worse!! We have set a tentative time for replacement surgery at early February!
Just wanted to put this out there so I could recieve the flood of kind words I know you all will offer!!!
Actually, I am mostly feeling relief... can't wait to get it over with and move on with my life!!! I hate that feeling of never knowing when!
Also, of course, I am scared. I know the surgery is likely to go well... but just the thought of them having to STOP my heart freaks me out.....

 

[Ross]

How much worse is much worse? I guess I'm asking why are they waiting until February?

 

[Nancy]

Hi Elena-

I guess I have the same question as Ross. If things are going south, what would be the point in waiting a long time? That's 4 months away.

I know you must be a little nervous right now, but as you have mentioned, getting it over with will be a big relief.

God Bless.

 

[bvdr]

Hi Elena,

I have the same question. When I had my surgery scheduled it was as an elective procedure but 5 weeks later it was no longer an elective but "urgent". From Jan to Aug. my ejection fraction reduced from 69 to less than 50. Valves sometimes go on an even keel for a long while but once they start on a sharp decline they really decline!

I am glad your wait is coming to an end. The waiting was the hardest part for me. I found the surgery itself not nearly the mountain I expected it to be but nevertheless I am ever so thankful to have it in my rear view mirror.

..........and you know, we will be cheering you on all the way!

 

[KimC]

Elena,

How quickly things change! I'm also uneasy with you waiting if the leak is severe. Listen to the pros above!

I've heard that my aortic insufficiency is either mild-to-moderate or moderate-to-severe. I know the pregnancy increased it for awhile, but it makes me wonder if any damage was done while the leaks were at full blast. It just amazes me how dynamic the heart is.

I hope you're feeling OK --

Best,

 

[tommy]

Elena,

I'm almost exactly three years from when my cardio said its time to replace the valve. There are some vivid memories there. My cardio said that he wasn't gonna call 911, but don't wait until February. Hmmmmmmm. My nerves couldn't have waited until February anyway.

We scheduled the surgery based on several things:
1. Selecting a surgeon and having him available (kinda obvious).
2. Having a close family member available to stay at the house and keep the teenagers activities going. This enabled my wife to focus on me for a few weeks.

This took about a month - surgery just after Thanksgiving.

It's okay to be afraid. Try to channel the evergy into something useful.

 

[Enudely]

well, my Doc said that he was being conservative, because of my age (24 yrs)... so some other doctor might tell me I don't need it replaced for a year or two. He doesn't want to risk permanent damage.
Also, he said he wants to wait until the holidays are over, so originally he said January... But I'm supposed to go to Guatemala for two weeks in January!!
(I've REALLY been looking forward to it)
When I told this to the doc, he said that we could wait until Feb or March.
You are all right, though, now that its coming up, I want it to be tommorow!! The thought of waiting four months is agonizing. Plus, my heart is beating so hard that I can feel it in my neck and stomach AND I can HEAR it (it's not like it's easy to get my mind off of it!!)
I guess I'm (reluctantly) starting to think that maybe I shouldn't go to Guatemala (Sob sob!!). The risk of getting sick and compromising my health right before open heart surgury is my worry..... This I will have to talk to my Doc about (he has already said it is o.k)
Maybe If I take my water filter, and a whole bunch of Cliff Bars>?
Well, my fiance's brother has been living out there for a year (Peace Corps) so I think he would be able to take good care of us, and my fiance's parents will be there too (fronting the dough for good food).....seems wishy washy....don't know if it's a good idea at this point (but I HOPE it is!!!)
But, yes, I don't know how my nerves are going to take this waiting of four months!
here;s some good news for ya'll: anyone remember my horribly insensitive, ******* (excuse my french) of a cardiologist that I had? Well, I finally got Kaiser and I LOVE my new doctor!!! HOORAY (just in the knick of time!!) Get this, he is a GUITAR PLAYER!! (just like me) this is very very very very good!
There is one other doctor who I like but is not Kaiser and I think I am going to ask his opinion on the matter also.
thanks for all your support
ps. I've been reading all the "pre-surgury" posts and am concerning myself over little detailed advice such as "Bring chap stick and a small pillow!!" and "Buy a comfortable recliner chair!"
any thoughts on these things or additons to them would be appreciated! thanks so much, you are all so great (but of course, you already knew that!)
-elena

 

[Georgia]

Good for you, Elena

Good for you, Elena

I sure remember your travails with your ex-cardio from WebMD. You've had quite a battle to get where you are now. I sure admire you for your tenacity and determination to get well.

I think that focussing on the minutiae of preparation is a great way to get through the presurgery time. Record movies and tv shows you like, because even reading trash mysteries can take more concentration than you'll have for a few weeks post surgery. I found old Perry Mason's and Antiques Roadshow to be my favorite shows while first recuperating. That's the most concentration I could manage.

I really don't have an opinion on the Guatemala thing. Sounds like a lot more energy than I had when I got to where I needed surgery. If your doc says it's OK, seems to me you should go for it - just don't eat the fruit!

Hang in there, kiddo.

 

[JetService]

I know how you feel about your trip. I had to cancel a trip too, but it was worth it. I know with a surgery looming and a fear of getting sick out of town, I wouldn't have had as much fun. Now the trip is scheduled for March and with the surgery behind me, all I can do is have fun.

P.S. the thought of my heart stopping REALLY bothered me too. But I figured if I was working non-stop for 37 years, I'd probably enjoy the rest

Good luck and I hope all goes well. Stay tuned on these boards throughout! The people on here make things SOOOOO much better.

 

[Heather Fisher]

I'm so glad you love your new doctor. I changed my cardio the day before surgery and have never been happier. As for your trip, chances are you will be able to go and have a great time. I went away for a couple of weeks before surgery...kind of a time to "get my head on straight". The waiting can be a killer though. Just organize your time and get things ready such as quiet projects for after surgery. Also, be on the lookout for any changes or new symptoms. Your first job is to look out for yourself and move the surgery date up if you need to. You are so young, you'll have a lot of opportunities to have fun and take trips so don;'t despair if it doesn't happen this time! Good luck and keep us posted.

Heather

 

[Enudely]

You guys are so great! Thanks for the advice!
I have a question. My cardiologist says that I will probably be fully recovered in 2 weeks (!!!) but that I should take four weeks off of work just in case....But I've looked around on the internet and the popular concensus seems to be that It takes 6-8 weeks to fully recover. (and a year to be COMPLETELY over it) I want to make sure I give myself plenty of time and am thinking of trying to take 2 months off of work (though this is certainly not the best option financially!) What do you guys think? I;m leaning toward two months... does this seem extraneous?

 

[Ross]

There ain't no way in Sam *ell you'll be recovered in 2 weeks. What is that Doctor smoking? Check his arms for needle tracks or something.

At minimum, 4 weeks. 6 weeks is preferable and 2 months would be great. You'll still be a little off of center at 2 months, but nothing like you will at 2 weeks!

 

[bvdr]

?????maybe your doctor should spend a little time on valvereplacement.com to get a glimpse of reality.

 

[JetService]

Elena, my cariologist replied to my question about Lima and your surgeon, but unfortunately he could not provide any info. He said he has only been town for 4 months and is not familiar with the other area hospitals. I'm sorry! I really wish I could've helped!!

Darren

 

[scottvant]

> but just the thought of them having to STOP my heart freaks me out.....

This is one reason I'm actually GLAD I didn't have time to do any research on all of this before I had to do it. Afterward, when I found out about the heart-lung machine and all that, of course it made sense, but I didn't even think about it going in. Right now I'm writing a short story (kind of like a short autobiography) to put on my website, and friends have already commented, "are you sure you want to put all that detail in there--you're going to scare the sh*t out of anyone who's got this experiece AHEAD of them..."

You know what, though, it felt a lot like my very first jump. You get about 15 minutes of pre-flight "training," and then into the plane you go. (I tried not to notice the great big sign on the way out to the runway that said "Watch the wind--propellers rip off heads!!!") On a tandem jump, once you get on the plane, your jumpmaster sits behind you on the bench and starts buckling his harness to yours--you're in front, and you feel him tugging on the buckles from the back--I suppose to reassure you that you really are hooked together--he's the one with the parachute, after all. At that point the experienced jumpers start to chatter about how IT'S WAY TOO LATE TO BACK OUT NOW!!! Even if you do chicken out, they'll still keep your $209, so if your reasons are financial you might as well jump. Then of course there's all your friends you're with who will NEVER let you hear the end of it if you don't go through with it.

The good news is, you don't ever have to actually JUMP. When it's your turn, you walk (on your knees) to the door, grab the bottom of the door opening with one hand, at which point you notice the only thing between you and the ground is 12,500 feet of air--and the jumpmaster counts--ONE, TWO, and he never gets to three--it's a fake out. He shoves forward with his shoulders and out you tumble.

The morning of my surgery felt just like that. They wheeled me out of my room and into pre-op, my anesthesiologist introduced himself and started doing all of his "pre-flight." At that point I knew that any worry, stress, fretting, or freaking out would just be a useless waste of energy, so I didn't. (OK I did manage to find religion again in those last 20 minutes before OR but other than that...)

The moral of the story--the time-honored tradition of not worrying about stuff you can't change. The doctors are the ones doing all the heavy lifting, not you.

Do insist on good drugs afterward, I did, and it made the next couple of days MUCH easier.

Good luck,

Scott

 

[scottvant]

<<My cardiologist says that I will probably be fully recovered in 2 weeks (!!!) but that I should take four weeks off of work just in case....>>

I dunno about that. I don't know what that means, "fully recovered" in 2 weeks... I know I didn't feel anywhere NEAR "recovered" until weeks 4 or 5, and I took 5 1/2 MONTHS off work...

One thing people kept telling me--don't push it. (I also found out, rather quickly, about Arnold Schwarzenegger and his failed Ross Procedure and I for damn sure didn't want the same thing happening to me...)

Also, here's my one drum I like to bang on this forum--don't wait four months. Don't wait any longer than you have to. I am currently dealing with a much more complicated recovery than I would be if I had found out about (and fixed) my problem even 4 or 5 weeks sooner, apparently. (Not to make you any more nervous, of course...)

Be good to yourself.

Scott

(Also, trips and vacations can wait. Trust me on this...)

 

[Nancy]

Hi Elena-

I'd just like to express my opinion regarding going to Guatemala with a serious heart condition, just before needing surgery. That really scares the heck out of me!

If you should become ill there, you could be in the terrible position of not being well enough to fly home to get things taken care of.

This happened to a friend of the family, who was visiting In NYC from a country in Africa. She had a valve condition, but thought it would be OK to come here for a visit. She became so ill that she woud not have survived a flight home. She ended up having her heart surgery here on an emergency basis. It was probably a fortunate thing for her because she had excellent treatment here.

But think for a moment if it were you in that position, would you feel comfortable being very ill in Guatemala, or possibly needing heart surgery there, if they offered it? Catching a cold there might be OK, but needing heart surgery??? If you did become ill there, you would be putting an ENORMOUS burden on your family and friends who are there and whom might have to pay out of pocket for your medical care, not to mention their emotional burden of trying to take care of you there while seriously ill.

I think you have to consider all of the scenarios here.

I also agree with everyone else regarding the 2 week recovery time that was related to you. Having taken care of my husband through many thoracic surgeries, I can attest to the fact that you will still be feeling pretty under the weather at 2 weeks time. There is no way that you would be "up and at 'em" at 2 weeks. This is major, major surgery, not like a appendectomy. It involves many body systems, and also takes an emotional toll.

It's important to have some realistic information with which to make your decisions. That way you can make proper plans and not be disappointed.

Guatemala will be there when you are feeling better and are no longer in danger, and your body needs the right amount of healing time so that you will have a good and proper fix for your heart.


Wishing you all the best.

 

[Enudely]

thanks guys....
You are all making me want to talk to the doctor about the possibility of having the surgery sooner.... and also about skipping the trip to Guatemala!! (so sad!) Unfortunately, they have already bought the tickets....
My doctor made it sound like I could wait a year for the surgery but that it would be better to do it in more like four months.....so that makes me think that there won't be too much damage done to my heart. But I would feel much better (as would all of you, apparently) if I had it sooner rather than later. OF course, all that anxiety of not knowing WHEN has turned into not knowing EXACTLY when!!! Can't wait to get the date set!
Scott:
Thanks for the relay about skydiving.. I can definitely relate to that!!! You took 41/2 months off!!! OH geezzz!! I can't afford that!
I'm thinking about trying to get one of my friends to put on a big benefit concert for me (I'm a musician) so I can take as much time off as I have to. I can't figure out why the doctor said that. I was thinking maybe it's because I'm young and otherwise very healthy.... but still... two weeks seems like a stretch. I guess there's really no way of knowing how long it will take. Do you all think It's possible for my to heal a LOT faster because I am so young? Scott, how old/healthy are you!!???? (you look pretty young in the picture)

 

[Nancy]

Hi Elena-

What instrument do you play? If there is anything requiring lung power (horns etc.), or an instrument requiring bowing like strings, or percussions, you might have to consider that your lungs will take a little time to get in shape, and the bowing and percussion movements might be difficult with the sternum healing that has to take place.

Just some things to think about.

 

[scottvant]

<<You took 41/2 months off!!! OH geezzz!! I can't afford that!>>

Yes, well. Disability insurance is a wonderful thing. I could have opted out of it when I got this job, but for the $1.50 a week or whatever it is, even though I thought, "I'm 28--what will I *possibly* need disability insurance for?" Flash forward 7 years, I'm awfully glad I had it.

<<I'm thinking about trying to get one of my friends to put on a big benefit concert for me (I'm a musician)>>

What kind?

<<Do you all think It's possible for my to heal a LOT faster because I am so young? Scott, how old/healthy are you!!???? (you look pretty young in the picture)>>

34 last year when I had all this done, 35 now. Pretty good health, actually. 8 years ago I was overweight--around 250 lbs. Got tired of that, and started working out. First just on the stairmaster, then added weights. Last summer, right before I got sick, I was in the best shape of my life--in the weight room 5x a week, some type of cardio exercise (either in the gym or outside on a real bike or rollerblades...) 3 or 4x a week and 90 minutes of Power Yoga 3 or 4x a week...

I have read on other forums of people going back to work after 2 or 3 weeks. I wouldn't have even considered it until at least week 5... Maybe because I thought I was invinceable until this happened I turned into a real big crybaby in the first few weeks after the ordeal.. If I had had more time to prepare mentally I imagine I may have been more able to take it in stride... As it is I threw a two-month-long "poor me" tantrum.

Scott, you don't necessarily need to do that, though, and I don't recommend it.