New to Group

[crawal]

Hi All
I am new to this group and glad to have found you! I am 10 days pre-op for AVR and am terrified!! I am 40 yrs old and thought I would be many years from needing surgery. But now I have severe stenosis with an ascending aortic aneurysm (BAV).
I went from my annual echo check to scheduling surgery within 4 weeks....
This is my 1st major surgery/hospitalization so needless to say my anxiety is high.
It's nice to read all of your posts.....and comforting to hear from others who have been through this.
Amy

 

[Lynlw]

Hi Amy, Your feeling are pretty normal, I'm glad you found this place to talk to others going thru the same thing and read how well poeple do after surgery. Where will you be having your surgery? There is alot of great info in the various stickies at the top of the different 'forums', but feel free to ask any questions.

 

[Mentu]

Hi Amy and welcome to VR. Lyn is spot on. Learning that you are going to have life changing surgery is a lot to take in. I would just say that you should try to relax and not let the anxieties overwhelm you. If they are, you may want to speak to your family doctor about what is happening. She or he will be taking of care of you later on so it can be wise to include your family doctor now. As for the surgery itself, Amy, there really is no benefit it worrying over it. You will be asleep. You will close your eyes and a moment later you will open them as a nurse says "Amy your out of surgery and everything went well." For most of us, this is a pretty big deal in our lives but even so, try to read the experiences of others here in VR and consider that you are likely to do wonderfully well. The week of surgery will take on its own momentum because the team that will care for you has done this many many times and they have a book which outlines what you should be doing. If it seems mysterious, Amy, ask someone for a better explanation. These teams have chosen to help patients through the first week and they are like any professional. If you express an interest in what they are doing and ask questions they will respond to you.

Amy, if you have questions for us, ask them and we will do our best to help.

Larry

 

[Jason]

Hi Amy! Your story sounds like mine, only a month or two removed. I went in for my annual echo for bicuspid aortic valve in February, and found out that I had an aortic aneurysm requiring surgical repair. I had my surgery March 7th (replaced aortic valve with carbomedics 25mm valve, replaced anerysm with Gelweave 28mm graft) and have been in rehab and recovery since. Like others have said, the pre-surgery anxiety is something we all have, and something that you should try to reduce. The days after the surgery were no where near as bad as I had made it up to be in my head beforehand. Good luck, and if you have any more specific questions, let me know!

 

[Dash]

Hi Amy,

I too am new to this group and I'm glad you are here... Everyone here is like family and is very interested in your prognosis and on-going care. I'll be right behind you on 5/9 with my AVR. I'm 41 and this is my first surgery as well, so the feeling is mutual. I'll be prayin' for you and know that you now have many more friends than you had before you joined VR.

Keep us updated. It'll all be just fine!

 

[Bill B]

Amy:

This was my first major health issue as well. And mine deteriorated a lot more rapidly than average as well. Still, I had 3 month from when I scheduled surgery to get used to what was going to happen. I concluded pretty quickly that this operation has such a very high success rate that I should not get too worried. Talking to the surgeon added even more condidence that things were going to go well. Over the months before surgery I was on here a lot and asking the surgeon and his staff lots of questions. That helped to dispell any remaining concerns. I was wheeled into surgery in pretty good spirits. My surgery was pretty uneventful and I woke up with no pain and never had any. I had relatively minor recovery issues other than the expected marked weakness. Still, I will warn you that the early recovery period is loaded with new and unusual sensations, and your imagination can think any of them is a sign of something going wrong. I worried way too much during this time and undermined the rest and recovery process. Stiil, it all worked out well once I recognized I was driving myself and the hospital staff nuts.

So, I encourage you to look beyond the shock you naturally feel at learning you are headed for imminent major surgery and recognize that this is a surgery that is lifesaving and incredibly successful. And maybe then you'll take some time to prepare yourself for recovery, something I wish I had done a little better.

 

[crawal]

Wow. You guys are great ..your responses are helpful and very reassuring. My surgery is scheduled for April 18 at the university of pa hospital. I am set to have an OnX valve.
Bill mentioned not having postop pain....was that the case for others? I know everyone has different pain response ....but I think most of my fear is of the postop pain....not the surgery itself.
Thanks again for all of your responses.
Amy

 

[Lynlw]

Wow. You guys are great ..your responses are helpful and very reassuring. My surgery is scheduled for April 18 at the university of pa hospital. I am set to have an OnX valve.
Bill mentioned not having postop pain....was that the case for others? I know everyone has different pain response ....but I think most of my fear is of the postop pain....not the surgery itself.
Thanks again for all of your responses.
Amy

Hi again, My son has had most of his heart surgeries at CHOP and many of his doctors are on staff at both HUP and CHOP. Who will your surgeon be?
Pain. everyone is different, but often people don't have pain in the actual incision area, but might have pain in their neck and back muscles mainly from the way they have your body opened laying on the OR table. One good thing is they are VERY good with pain meds, most do not want you to be in pain, they'll work hard to control it, because if you are in pain it is tough to doing everything you need to do to help your recovery , like walking the halls and doing your breathing excercises etc. So IF you are in pain, just tell them.

Justin says it is more a soreness than pain if that helps?

 

[Marguerite53]

Hi Amy! So glad you found us! This is a wonderful, caring, supportive, smart community and you can ask us anything, anytime.

I know it seems like a big rush to surgery for you, but for what it's worth, my valve was at 1.0 in 2003 with a prognosis of surgery within 3 years..... well...... I had to wait the whole 3 years! Waiting can be very hard! I honestly thought I would croak before they would agree it was time to do the surgery!! :tongue2: These people here kept me from going insane.

If you are concerned with pain, be sure to talk to your surgeon about that. The anesthesiologists are magicians!!!! I don't remember any pain (well, you know, there's going to be pain, of course, but really it wasn't unreasonable for me at all) just after the surgery. I know there is a kind of anesthesia that makes you forget your experience. They must have used it on me because I don't remember anything but the good stuff while I was in ICU. Once you get to the Cardiac ward they generally have your pain meds pretty adjusted, and you are coherent enough to help them manage it all for you. It isn't pain so much as that achey, really tired, flu-like feeling. Most of us think of it as feeling as if you've been in a car wreck -- you just feel battered up. No searing pain, though. NONE. Just really beat up feeling for awhile. And so tired. Oh my... so tired!

Amy. Guess what? My surgery date 5 years ago (next month) was......... April 18th!!
A very, very, very, very, very good day!! I hope it will bring you the same good luck! I'm counting on it.

Nice to have you here.

Marguerite

 

[Bill B]

Pain...I rather lucked out. Most people have some pain and discomfort at some point, and you'll certainly get good drugs to help manage that. The surgery itself is a blink of time. I have no recollection of anything from the time they wheeled me out of pre-op until I woke up in the ICU, seemingly a second later. That is par for the course. You may wake up groggy and there is some chance you may still have a breathing tube. I woke up fairly alert and the breathing tube was already gone. There are a number of precautions and techniques they will teach you to prevent or reduce painful stress on the sternal wound. Expect some challenges. Although they will likely be different than mine, many people here have had one or another of all of them, so when you check back in here during recovery you can get plenty of help should you need it. Also, you're going to a major institution that has so much experience with this operation that you will be in excellent hands, and you can expect them to cover all the bases with you. This surgery has become rather routine. The piece of plastic and Dacron in me just works, and I have no restrictions at all on my activities now that i have gone through recovery and rehab. Best of luck on the 18th. Expect to do well. No doubt, this is a monumental, life-changing event, and you have every right to be anxious. The reassurances you get here are sincere and well-founded, but I know how hard it is since so much of what you are facing is unknown to you.

 

[Lynlw]

Amy, after reading Margurites post about the date, I looked at the calender and noticed a few people were having surgery on the 18th. The reason I am mentioning it is because another person Buffhughes is also having surgery at HUP that day, incase you want to PM him or anything, it would be a shame to realise after you got home there was another VR member there.

 

[Jeri]

HI Amy,

I really can't say much more than what was already said....this is a wonderful forum with lots of wonderful, positive people. They have all helped me tremendously. I am scheduled for my AVR on April 20th....so I am right behind you. I feel pretty positive about everything but this is my first experience with something major as well. I am a bit older....at 58...so I have been very blessed all these years. I know this isn't a "day at the beach" but I will deal with it and come through fine. I think we all have our guardian angels looking after us and we are blessed with these skilled surgeons....so ...no worries!!! Take it one day at a time and stay positive....feel free to message me anytime if you want to. And welcome to this wonderful forum.

Jeri

 

[DeuxofUs]

Hi Amy!

Welcome! I found this site in Feb after my diagnosis with BAV. I too am 41, female. I nearly crashed my car driving home I was so upset. I thought it was the end of the world for me.

I declined pretty fast in the past year so my surgery may not be too far off. Everyone said great things here so I don't have much to add than to please not worry too much. I have my moments of being scared but this forum has helped me so much.

It's not a death sentence and as some say on here.. way better than the alternative. You will be fine and we are here to support you. Remember, you are *not* alone.:thumbup:

 

[Allisoninoz]

Hi Amy,
I'm 42yo and had the Ross Procedure to replace my unicuspid aortic valve (they'd thought it was bicuspid 'til they got in there) on Feb 22. I'd also had two heart surgeries in childhood and had always knew this would need to be done eventually. i was really scared about the pain because of memories of childhood. I posted that query in pre-surgery forum. It was titled 'truth about pain' so if you search for that you'll find people's responses. As it turned out, the worst pain/discomfort for me (and many others) was actually neck and back - nothing at all to do with chest/incision. And that was partly because I already had neck problems. It's a LOT better now that I'm in rehab and am six weeks post-surgery. As others have said, the anxiety in the lead-up is much worse than the reality.
Good luck. Allison

 

[Johan]

Hi Amy
I had no pain and never took any pain medication beyond what was in the IV lines during the first day or two. I was 66 and "sailed" through the operation according to my cardiologist. And so will you! Shall be thinking and praying for you on the 18th.

 

[LeakyUK]

Amy, I am still two to 3 months from surgery & have needed anti-depressants to help with anxiety, BUT I have had several minor procedures, probes and investigations over the years and none of them were anything like as bad as I had feared after reading the warnings and signing the consents. My angiogram was almost enjoyable. Pain has never been an issue because it will be managed if required. My plan is to transfer audiobooks to an MP3 player, so I can isolate myself if too tired for actual reading - and in case I have trouble sleeping.

 

[Jons101]

Amy,

I'm also 40 years old, and set to have my 2nd AVR surgery at the Hospital of University of Pennsylvania on May 2. I'll actually be there on April 18 for a pre-op meeting and tests. I had my first AVR there 8 years ago, but my tissue valve has worn out and will be getting a mechanical this time. Concerning the pain, I wouldn't let that bother you; like everyone here has been saying, pain management after the surgery is very good, and you'll just feel very tired and worn out. HUP has an excellent reputation, you'll do just fine.

Jon

 

[drivetopless]

Welcome, Amy-
I just turned 47, and I got my On-X valve in January. Be sure to participate in the online survey. Not that it should influence your valve decision (I had already decided on ON-X prior to the surgery), but so far I 've gotten a t-shirt, $150 gift card, and a pyrolytic carbon coated ring--uses the same coating as the one on the valve. YES-- Jewelry! Ha Ha, love it. It sucks having to deal with OHS, but presents make it better.

Let me know if you have any questions about the On-X valve in particular. I'm 3 months post op, and other than a bout with a-fib (probably would have had htat with any type of valve), I'm doing great. The valve is working beautifully. Being on warfarin has not been an issue either. I can hear the valve tick sometimes, though.

Good luck with your surgery.

 

[Greg a]

Hi All
I am new to this group and glad to have found you! I am 10 days pre-op for AVR and am terrified!! I am 40 yrs old and thought I would be many years from needing surgery. But now I have severe stenosis with an ascending aortic aneurysm (BAV).
I went from my annual echo check to scheduling surgery within 4 weeks....
This is my 1st major surgery/hospitalization so needless to say my anxiety is high.
It's nice to read all of your posts.....and comforting to hear from others who have been through this.
Amy

Wow. You guys are great ..your responses are helpful and very reassuring. My surgery is scheduled for April 18 at the university of pa hospital. I am set to have an OnX valve.
Bill mentioned not having postop pain....was that the case for others? I know everyone has different pain response ....but I think most of my fear is of the postop pain....not the surgery itself.
Thanks again for all of your responses.
Amy

Amy, a heart felt WELCOME to our OHS family glad you are getting some of the information that you are seeking ,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

 

[Greg a]

I have added you to the FOUR OTHER VR MEMBERS that are booked that day on the calendar

http://www.valvereplacement.org/forums/calendar.php?do=getinfo&day=2011-4-18&c=1