Scared but excited!!

[BCMike]

I would like to introduce myself. Hello everyone!! I'm Mike. I have been reading for weeks now and still haven't figured out how to contribute, so I just thought I'd jump on in. I can't thank you all enough for helping me so much with all of the very useful information I have found on this site.

I had AVR pig in 1999 at the age of 20 (I knew about the valve functioning poorly at the age of 10, but the Dr's just waited and watched me get sicker and sicker until they felt it was time).

I was fortunate enough to get 12 years out of this puppy, but it has finally packed it in. Also, my aorta is dilated and will need replacing. I will be getting the ON-X aortic valve with ascending aorta prosthesis. (special order in Canada as Health Canada is still in the approval process). Hopefully this will mean no more OHS!

I'm scared. There - I said it. I wasn't at all worried back when I was 20, but now I am having nightmares!! I have to keep it together for my family as they are more worried than I am. Dreams of waking up in the OR. So vivid and traumatic they actually affect me throughout the day and I'm jittery and anxious. Crazy stuff.

That said, I can't wait until I have my energy back (I hope). I also have MS and fatigue is a major symptom of MS, so it's not really clear to anyone how much of the fatigue is due to this or the heart. I remain cautiously optimistic.

Again, thank you to each and every one of you - especially the regulars- whom I feel as if I know like family already!

Oh yeah, any ideas on how a newbie can contribute? I want to help but it seems like everything I could possibly add is already here. Please advise because I'm off work and I don't go in until mid October.

 

[dick0236]

Oh yeah, any ideas on how a newbie can contribute? I want to help but it seems like everything I could possibly add is already here. Please advise because I'm off work and I don't go in until mid October.

Welcome BCMike. Almost everything that is posted here has been posted before....but the audience keeps adding new folks.....so your message is always new to someone.... stick around:thumbup:.

 

[Lynlw]

Welcome BCMike. Almost everything that is posted here has been posted before....but the audience keeps adding new folks.....so your message is always new to someone.... stick around:thumbup:.

I agree with Dick and everyone likes to hear they are in another person's thoughts and prayers, or just know someone else understands what they are going thru, so that is a great way to contribute. Welcome and I will keep you in my thoughts. I wish I could help with your fears, but unfortunately even tho you know that you wont wake up during surgery and how great the odds are in your favor of having a very successful surgery ad recovery, it can be really hard to keep those thought from sneaking into to your brain..well thats been my experience anyways, but try to focus on the good parts like how much better you will feel. Since this is your 2nd OHS, if there was anything last time you wish was handled differently, make sure you tell everyone during your preop day.

 

[BCMike]

Thanks Lyn and Dick!

Last time I had complications once home. I had fluid build up in the sac around my heart. The pain was excrutiating but Dr's kept treating me like I was a whiner and saying things like "Of course you hurt - it's like getting hit by a truck."! The pain and breathlessness got so bad I made a huge commotion about it, but noone listened! Finally they did an echo and within a minute of starting the test, I was being wheeled away to have the fluid removed. I talked to my new surgeon and he assured me that if I had any concerns post-op, he would do an echo. You really do have to be your own advocate and push for answers when you know something just isn't right with your body. I think that may be where my fears are coming from. The nightmares have such a theme of "Noone will listen to or believe me". Probably I blocked the situation out because it was over, I survived, and I was healthy again. Now it's time again, I must be processing the trauma and fears from back then - now. Hmm - funny how the mind works.

 

[Greg a]

Welcome to the family ....just by being here you are contributing to someones well being .....just recently we had a member undergo surgery and I paid a hospital visit there are many members in BC that you can PM a big message to get out is YOU ARE NOT ALONE !

 

[Julian]

Please advise because I'm off work and I don't go in until mid October.

This sounds like me, I was off of work for a month before surgery. BORING! WORRYING! DYING! I know how you feel. I also got the On-X with ascending aorta combo. Just got approved January 2011 in the USA. Keep posting, and keep sharing whatever comes to mind. Interesting point you bring up about nightmares. Mental torture isn't something people talk about on this forum often but we are all aware of it before and after surgery. I was having dreams months before surgery where I couldn't run very much in my dreams because of my heart. In my dreams I was still conscious of my condition and was more fragile even in my dreams.

 

[Mentu]

Welcome aboard, Mike

Welcome aboard, Mike

Hi, Mike, consider that if new members didn't voice their concerns and share their experiences, only Dick would be posting here. We all bring to VR different writing styles and our own set of concerns and experiences. Each new voice adds to the diversity of our discussions and this helps keep our community vibrant. This does mean that some questions are going to reappear but that is just the nature of our shared experiences. Each of us will find some discussions that are more helpful than others and this can only happen when many of us participate. As for you, by virtue of approaching a second surgery as a young person you represent an important minority of our members. Many of those who read the website may find your's a more compelling voice because of that. Your voice enriches our conversation, Mike.

You mentioned your nightmares about surgery. Considering your experience as a child, Mike, it sounds as though you are likely experiencing post traumatic stress disorder. We all experience anxieties as we approach surgery but your nightmares are more typical of symptom of PTSD. I would encourage you to speak with a counselor to explore this possibility because it can be resolved.

Welcome to VR, Mike. You are not alone, Mike; we are your community and look forward to sharing with you.

Larry

 

[Jkm7]

Thanks Lyn and Dick!

Last time I had complications once home. I had fluid build up in the sac around my heart. The pain was excrutiating but Dr's kept treating me like I was a whiner and saying things like "Of course you hurt - it's like getting hit by a truck."! The pain and breathlessness got so bad I made a huge commotion about it, but noone listened! Finally they did an echo and within a minute of starting the test, I was being wheeled away to have the fluid removed. I talked to my new surgeon and he assured me that if I had any concerns post-op, he would do an echo. You really do have to be your own advocate and push for answers when you know something just isn't right with your body. I think that may be where my fears are coming from. The nightmares have such a theme of "Noone will listen to or believe me". Probably I blocked the situation out because it was over, I survived, and I was healthy again. Now it's time again, I must be processing the trauma and fears from back then - now. Hmm - funny how the mind works.

Hi Mike,
Happy you found us but sorry for the reason. We welcome everyone who comes here facing what so many of us have been through and those in the 'waiting room'.

A quick note about my second surgery and my 'fears' remaining from my first.

I had second OHS four years after my first, with the same surgeon in the same hospital. When I was speaking with anesthesiologist the day before my surgery, after he asked all the 'technical' sort of questions, he sat back and asked me: "What is your worst memory from your last surgery here?" What a GREAT question. I was so grateful to tell him what lingered in my mind as what I dreaded the most going through this surgery again. I answered him and he looked me straight in the eye and said "I, personally, will see to it that does not happen to you again." And he kept his word......

Tell your doctors and nurses and everyone involved in your care any concerns you have. Most really want us to have the easiest time of it possible.

Now that you've found us, don't be a stranger.

 

[piglet]

Hi Mike
I'm glad you found this site, I hope you visit often. I have been helped so much by the people here and I'm sure you will be too, it helps so much to talk to people who are on a similar journey. I agree with Mike, you may benefit from talking to a professional about the nightmares you've been having.
Welcome Mike

 

[rubywhistle]

Hi BCmike

Firstly thanks for saying you are scared - me too. I think maybe everyone too? I was having bad dreams but then I had one where it was over and I felt great until I woke up and it hadn’t happened. As people often say on here - the waiting is the hardest part - I hope it is true.

Secondly - you were strong enough to advocate for your body last time and well done this time round you will trust your instincts.

People on here told me I may be surprised at how much your family will help with this sometimes even having someone stand up to talk to the doctor when all you can do is lie there will get things done/heard. My parents were both Drs they no longer work in er or hospitals but they have told me if I am worried MAKE A FUSS or you will be put in a corner because they are busy and someone else fussing. This made me laugh because it is so unlike them to say that but I guess its alot different from sending a cold coffee back in a cafe.

Haha Julian put

BORING! WORRYING! DYING! I know how you feel.

-YUP that is pretty much it

 

[BCMike]

Wow! You guys are great! I go away for a few hours and come back to this. It helps a ton! Can't really talk about it with family so I really appreciate having this resource. Noone else really wants to hear about it or even know the details - they either get grossed out, scared, or just don't really grasp what I'm talking about.

Julian, how's the equipment working out for you? Is it noisy? Are you able to have a lower INR?

I just got news today that the ON-X supplier in Canada is working with my surgeon to get special authorization to use the valve/graft combo before it gets approved by the government. It's lookin' good, baby!!

It is pretty boring, but at least it's nice weather here in Victoria at the moment so I've been working on my tan on the deck!

As for PTSD - isn't that for war veterans? I think the dreams themselves are more traumatic than what I went through back in '99! I did mention the anxiety to my GP but he wanted to prescribe benzodiazepines to chill me out and I'm not really into pills unless absolutely necessary.

Anyhow, thanks all for the support - I feel very welcomed here and hope that I can help others even an iota of how much I have already been helped by all of you. That is not an overstatement - this site and its members are invaluable. I think that cardiologists around the world should inform their patients of this website. I stumbled across it by accident and now can't imagine it not existing.

 

[piglet]

Hey Mike,
I'm close by, so if you ever need to hear a real voice, just say the word. Have you been to the new Royal Jubilee? It's pretty nice, huge rooms and all the horns and whistles you could need, even big screen TV's, there is also a 'Timmy's" and a 'Subway', you might think about bringing some munchies with you cause the food isn't the greatest. The staff are all awesome too, some of the best in the country, Dr. O'Fiesh did my surgery, he was great, who's your surgeon?
Have you tried listening to an Ipod at night? I wonder if some relaxing music in your head might not help with the nightmares?
Just saw the forecast, it's suppose to be pretty hot all week so you'll have more time to work on the tan.
Hope the pre-surgery time passes well, I was lucky in that reguard, I was emergant so I didn't have time to stew much.

 

[LeakyUK]

I dont believe in fighting the pills. You will be taking plenty after surgery. I started fluoxetene (Prozac) after I was diagnosed, and am now slowly coming off - its not addictive but best not to change too much at once.