Help! Beyond scared to DEATH!

[ARGreenMN]

ARGREENMN Thank you so much for taking the time to respond to my plea here. It helps so much just to be able to communicate with people that are having the same type of experiences as you are. They can truly give you insight and make you feel so much better. My angio is in just a little bit, and I'll let everyone know what happens. I think it will be about 3 bus. days before I know the results from what I've read. Thanks a million. Glad to hear you're doing so well. Brighter days ahead!

You can just call me Andy - lot easier to type lol. Sounds like you're a little better already, which is great. And you're absolutely right - it helps a million percent to talk w/ people who have been through this. We all start out on the side you're on now - the pre-op side (aka the waiting room). And we're all worried, have a zillion questions, etc probably just like you. Then before you know it (it'll go fast) you'll be on the other side (post-op side) and will be the one giving advice and support to others Just in the last few weeks that I've been on here, there have been several of us that have flipped from your side (by far the hardest side) to the post-op side. Myself, Gil, and Malibu to name just a few. It's so cool to see people come in scared, then a couple or few weeks later be the ones giving advice/support to those still in the waiting room. Ask, ask, ask until you feel comfortable. Talk to ya after the angio.

 

[mac]

You will be fine!!!!!!!!!!

You will be fine!!!!!!!!!!

Hi,
It's been awhile since I have bee on the site, shame on me. It is important for us vets to help out the newbies and ease the worries. I'am alittle over 6 months post op now. Just came back from 2 weeks in Europe, climbed in the alps, ate great, drank good German beer and didn't give my MECHANICAL valve a second thought. Had my INR checked yesterday...3.1....not to shabby. So don't let the warfrin thing scare you, I was worrried about it at first also. Mainly because I love good Micro brew beer....LOL.....not to worry. As far as the surgery, ya you will be scared, but we all were. Tjhat's why this site is so great. Also when you see how many AVR are done a year it is more comforting. Mayo did 2600 last year, that made me feel a whole lot better. Recovery happens fast. Buy a good sationary bike for the days you don't feel like going outside, it's worth it. Go to rehab, you will appreciate this also.
In 6 months it will all be a distant memory.
Later,
Mac....AVR, single by-pass, Carbo medics mechanical 11/19/09 By the great Dr. Suri, Mayo Clinic

 

[Bill B]

I understand your despair about this. It was a very rude shock when I was diagnosed with BAV and severe stenosis out of the blue after 60 years of perfect health. It really threw me for a loop. The first real health challenge I ever had and it was hard to absorb. I had some sleepless nights and a lot of morbid thoughts. But then I dove into it, and the more I learned the more I understood that this surgery is the safest cardiac surgery, with an extremely low (less than 1% now) mortality rate and a very high rate of perfect success with absolutely normal life after recovery. I found a surgeon I knew was going to do an outstanding job. I too fussed heavily over biologic vs. mechanical but eventually made the right choice for me, actually not until the night before surgery. The surgery itself, although technically very challenging for the surgery team, was over all easy for me. I had essentially no pain but just was weaker than expected and a bit anxious post-op (worried my recovery might not be complete) and had some real trouble sleeping that got better after a week or so. This is common. Quite often they will pull the breathing tube before you even wake up. I do not remember it at all.

Anyway, it's quite understandable and normal to be very apprehensive and distraught at first. However, I can honestly reassure you that this is almost always a remarkably successful and well-tolerated surgery that will save your life. Yes, this is major surgery. Yes, it will knock you back and require some rehab post-op. But within a few months you will feel much better and will have a new lease on life no longer threatened by your bad valve. So, take some time to deal with your feelings and hopefully you will eventually accept like I did that this will work out very well for you. Facing a challenge like this often produces positive changes in your life and your outlook on it.

Bill

 

[Angel]

Ok, I am a newby here. At first I was trying to respond to each and every reply that I received, but I think I can just put here a general thank you to each and every one of you that made a reply here for me. Last night I was very close to being a basket case. Today, somewhat better. I had my CTA done today. I will not know the results until sometime next week. Praying for good results. I cannot tell you what a tremendous help it is to me to have found this site and to read all the comments from everyone. I do not feel so alone now. Sometimes I felt as if I was the only one that had these fearful thoughts and feelings and that no one could ever possibly understand what I was going through with mentally. I've read so many things here that made me think, hey, I've been feeling and thinking the exact same way! It's comforting to know that there are so many people here that are post op and doing so well. That is truly encouraging to me and others as well, I'm sure. I cannot change what's been handed to me and neither can any of us. I can only deal with it and go along with the program in getting things better. I'm still petrified, true, but I've been greatly encouraged by each of you. Thank you all so very much, from the depths of my heart. I pray that each of you gain more and more strength each and everyday. Blessings to you all!

 

[Nancy]

The more you read and research your medical condition, the better it is for you. Knowledge is power and knowledge will help you be less fearful. Most of the things we are scared of are things we don't understand.

This site has a Reference Forum. Go there and open up the threads there. You will find a wealth of information at your fingertips. Read, read, read until your eyes can't take it anymore. It will scare you at first, but just keep on reading and absorbing everything. Your fear will get less and less, the more you read.

If you want to read a humorous and informative account of one man's journey with heart valve surgery, here is a link. The first page will tell you volumes about the light-hearted nature of this man, click on his picture. I read his online book before Joe had his Mitral valve surgery and it helped a lot.

http://www.stevegoldberger.com/bt/BumtickerHomePage1a.html

 

[Cris N]

Everyone who has already posted said pretty much what I would have. It's no 'walk in the park' but you'll get through it. And when you do, you can take a 'walk in the park'. Don't be shy about getting some assistance for that anxiety. Oh, and the tube - I was only aware of it when the nurse was yelling at me to cough so they could remove it.

 

[ARGreenMN]

Angel, one other thing that was incredibly helpful for me in the weeks before surgery was a series of videos this guy named Dan made on Youtube. He's a pretty young guy from England (late 20s or early 30s I'd say). Here's one from when he was 2 weeks after surgery, but he also has some that are a day or two after surgery and a couple months after surgery (as well as I think one that was before surgery). It gives you a good idea what to expect, and I thought was very encouraging. Here's a guy talking to you just a few days after surgery, and showing you his scar. I'd say my experience was very similar to what he describes in these videos. The first 2-3 days after surgery are a little rough, but after, for most people it gets better every day. You should see one or two of his others on the right side while viewing this one, and if you click on one of those, it will probably find more of his.

http://www.youtube.com/watch?v=Kde95-mbwj4

Hope this further helps to relieve your fear. Take care.

- Andy

 

[hensylee]

that's a natural state of mind at first. stick with this bunch and you will be educated, supported and accompanied by everybody here. Blessins........

 

[ARGreenMN]

Angel, if anyone was ever more scared of the breathing tube I don't know who it would be. I hate needles and any other foreign object in my body. That was the thing I was dreading most in the last few hrs before surgery - all the way up until they were putting me under - thinking the next thing I'm gonna know is waking up with a breathing tube - just couldn't get that out of my head. Well, I'm not gonna say it was a picnic, it was still my least favorite part of the whole deal (followed closely by having the bladder catheter taken out - by a dude). But honestly, it wasn't THAT bad. I didn't hurt much when they took it out (although not the most pleasant thing - it was quick). For me, it was the discomfort and anxiety while it was in. I was pretty awake (which sounds unusual) for I think an hour or so before they took it out. But my case may be a little different too because I had a phlem problem going into surgery (I think due to the valve getting so bad towards the end there). It was the phlem that caused the discomfort - felt like I needed to cough but couldn't. Anyway, just want you to know A) you'll most likely still be 'out of it' when they take it out, but B) even if you're wide awake, it's not the worst thing in the world, just not super fun.

- Andy

 

[Chele]

Angel, Hi i am Michele 35 yo female. I had my surgery 18 days ago. And my experience was definately the wait was worse than the recovery.

Before my surgery i was i wreck, could not concentrate on the simplest of tasks.

So i went in may 10th 5 am for my surgery, i was not nervous something happened in the last 24-36 hours a strange acceptance/peace came over me (I thought for sure i would have tried to run away lol) They do the whole prep etc thing they gave me something to relax and the next thing i remember is waking for a moment in ICU still had breathing tube uncomfortable but not painful, what hurt was my neck and in between my shoulders, for a moment i thought they did wrong surgery. Then back to la la land till what i think was tuesday still had breathing tube, apparently one drain was losing a lot of blood and until it slowed down they wouldnt take out breathing tube. My hubby was there holding my hand, and since i couldnt talk i spelled things on his hand i told him i love you and my back hurts. Then sleepy time again LOL.
Next thing i remember getting breathing tube out, didnt hurt just uncomfortable some ivs out then moved to my own room and tues(30 hours after surgery) for lunch had jello and it was wonderful !! Had a visit with minister, a nap and by tuesday evening took a walk like 50 ft but it was wonderful !! Got cathter out yippppeee !!
Wednesday and thursday consisited of walk nap small meal repeat LOL oh and that blowy thing ugh i hated that !!
My pain level never went above 4 mostly it was 2.5 ( My husband had more pain with his kidney stones last year) My chest incision on my chest never hurt as it scabbed it itched like crazy and my muscles above my breast ached like when you over work muscles. And my back pain eased up wednesday.
Friday i was set to go home when my blood count dropped and i needed a bag of blood , before bag of blood felt like a rag doll hubby said even lips were white after they gave me the bag of blood he said i was chasing food cart down the hall LOL.
So went home saturday, got carsick on the way home cause i had to sit in back cause airbag in front (3hour trip)

All in all it was not the worse experience in my life some say it feels like they been hit by semi truck, I felt like i got hit by a husky guy on a mountain bike. The time in the hosp (after i got my private room) Was very good for hubby and i, he stayed by my side 24/7 the kids and parents came and left , so other than the occasional nurse , Dr. etc. It was almost like a 2nd honeymoon. LOL

So here i am 18 days Later, the hardest thing is feeling this good and not over doing it. I feel basically back to normally, a bit sore but no more then i would get shoveling snow.

I hope this helps ease your worries a bit, Life for me is definately better on this side of the mountain.

Bless you
Michele

 

[ALCapshaw2]

Well Said Michele ! Thanks for sharing your experience.

I hope that other newbies read and are encouraged by your post.

'AL Capshaw'

 

[njean]

Thank you Michele for sharing your story with us & most of all with Angel!

I think she will definitely feel more at ease when she reads your post since you have just recently been there & everything is still very fresh in your mind!

Hope you continue to do well. Take care!

 

[Luana]

Hi Angel,
I'm just six months past surgery, so it's all still pretty fresh in my mind. Yes, it's scary. I was so scared about the idea of this surgery, I put off going to the doctor for over 2 years ignoring how crummy I felt. I have to echo Nancy about the idea of having something that can be fixed.That's a pretty great thing.

As for the breathing tube, when you "wake up" in ICU, your level of consciousness will not be like your normal waking consciousness. You'll still be quite a bit out it, even though you're awake. The only thing I was aware of was some plastic in my mouth. I didn't feel anything in my throat. I didn't particularly like the plastic taste, but, for me, it was no big deal, and this was one thing that I was especially dreading. It did not hurt to have it removed.

I am glad that you have found us here. I only wish I had found this list sooner than I did. I'll keep you in my prayers. I think everything will turn out just fine for you.

 

[Marguerite53]

Hi Angel. Welcome to this wonderful community!

The more you read, the more you will find that you are not alone. I learned of my bad valve many years before I had to have it replaced, but when they told me "sometime in the next 3 years" it was a very heavy feeling. I found this forum soon after and was truly kept sane and optimistic by all the support I got here. I even had a dream a few days before my surgery that everyone here (all the avatars photos and screen names) was holding me up on a blanket; all their faces smiling at me, and carrying me to safety. This is mind-boggling stuff! We get it!!!!

Once you get your Cath results you will have a ton of new questions. While you should ask your doctor most of them, we might be able to help you understand how to ask the questions and what kinds of answers to expect. When you have new questions, the best way to get the most answers here at VR.org is to start a new thread with each different question. Then, your thread title will get seen by more people and you will get a very broad spectrum of answers. Be forewarned -- we offer up a lot of information. You may become confused and frustrated. That is normal. You will find the answers and calm that you need to get through all of this. Be patient with the process of learning. And don't be afraid to ask us anything.

One of the best things I think we do here is help people find their voice. By this I mean that we give each other the strength to deal with our doctors and get the answers from them that we need to feel strong and optimistic about our predicament. If you can walk into this with the confidence to succeed, it really helps!

Stay with us. Keep us updated. No question is too silly or weird. We're here for you!

Best wishes.

Marguerite

 

[james]

Just keep letting it out. We have all had these fears. It's not easy to go through surgery but, life can still be really normal after.

 

[Angel]

Thanks to everyone here that has responded to me. Each of you have given me a world of information and I can honestly say, I have slept better the last two nights than I have in over two years!!! Truthfully. You are all helping me in a way I never thought imaginable. I honestly appreciate each of you taking your time to comfort and help me, providing me with encouragement and so much insight! I'm going to get this thing done, and I'm going to be ok. I really like feeling a little stronger now, I pray it will continue!! Many blessings to each and everyone here!!! You're an awesome group of people, and I appreciate you all.

 

[malibu82]

hi angel!

I was in your shoes. I just had my AVR on Friday, May 21st. (1 week ago).....I was SO SCARED. I didnt know what to do about it. I didn't think I could actually follow through with the surgery. But here I am. I kind of lived in la la land that last day and didnt check into reality. so reality didnt hit until i had to say goodbye to my family. it was terrible. there is nothing i can say that has not yet been said. just remember, in the end you will be okay. so you just have to try to think/look past the scary stuff and know that you will be fine

good luck and take care

jackie

 

[BarbJean]

I have been following this thread closely and it has made me feel alot better. The title, Scared to Death, describes my feelings also. Yet, I feel somewhat guilty saying that to all of you since you have gone through so much. Since I am not the one facing the surgery, it is my son I am scared to death for. Angel, I am so glad the wonderful people who responded to your post have made you feel better about your surgery. I wish you the best and will keep you in my prayers. Barb

 

[ARGreenMN]

Barb, from everything I've heard, the younger you are, the better/quicker you recover, have less complications, etc. so would assume your son should come through it with flying colors. Most of us old dudes are coming through it and being surprised once on the other side that it's not as bad as thought - so it should be even better for him! Best of luck and keep us posted!

 

[BarbJean]

Thanks, Andy. We see Dr. Cameron at Hopkins on June 8th and will know at that time the what, when and hows. Hopefully! I will definitely be writing more when we know. I have been so glad to hear from your posts that your recuperation has been progressing. Keep it up! Angel, we will soon be telling you the same thing.