56 Year Old Female Preparing for her first ever real surgery, open heart surgery

[BrownEyes]

Hi Everyone:

Hello from frigid Wisconsin.

I have been scouring the internet to deal with my stress, I was so thankful to find this site with so many of you sharing your experiences and ironically, some of the same fears I have. At 56, I may be one of the only women in the world that has never been in the hospital overnight. I have only had one surgical procedure in my entire life - in 2020 - to have my gallbladder removed by minimally invasive method with tiny 1 inch incisions. At 40, I found out I had a bicuspid valve during a stress test. At 45, I found out I was developing an ascending aorta aneurysm but was told that I probably would be 70 by the time they had to do anything about it. Over the last 2 years, both have started to decline rapidly particularly after I got covid, and last week I was told I would need open heart surgery soon to replace my valve and repair my aneurism. I am meeting with my surgeon next week. To be thinking about open heart surgery when I have no experience with surgery in general is very scary for me. I lost my dad at the age of 30 - and watched him go through multiple heart bypass surgeries starting when I was 13. I know technology and medicine are so advanced now, but memories of him in the hospital post-op still bring all this fear to my mind.

My niece is a cardiac nurse and has been trying to calm my fears, but I'm so stressed. I know this is stupid but I'm not worried about the heart surgery itself - I am going to have my surgery at Northwestern Hospital which is one of the best in our area. I am most worried about the weirdest things like:
1. Waking up with the breathing tube and fearing I will choke or won't be able to breathe
2. Waking up with all those tubes coming out of my body and then, having them removed when awake!! I can imagine this is going to hurt like hell.
3. Having multiple IV's in me. I just had 2 veins blown during my CTA scan last week and so now I have more anxiety about this! I am SO not good with needles and IV's!
4. knowing which heart valve type is the right one to have
5. Worrying about how long the valve will last and if I'm going to have to do it all again sooner than I expect if the valve starts to fail.

I go though periods of not being afraid and just wanting it to be over because I know my quality of life will be better when this is all done and I'm looking forward to moving on with my life and being able to eventually lift something without fear of my aorta exploding. I'm not worried about my recovery - I can deal with that kind of pain, drained energy, loss of appetite, limitations for a while, etc. I just know those first few days in ICU are going to be hell for me and that has me not sleeping well. I am in general a positive person but now I have these weird little moments of " pending doom" like - what if I don't make it? And I have problems planning anything beyond my surgery which is weird because I'm a planner. If anyone talks to me about doing something next year I change the subject and feel very strange like maybe I won't be there so why talk about it? Very strange emotions.

So here I am, posting my fears since I don't know where else to turn. My family is super supportive but they just keep telling me it will be okay. I am reading through posts so it's nice to know I'm not totally alone. So thankful I found you all and can read about your experiences.

 

[pellicle]

Hi BrownEyes, and welcome (from a rainy Sunday afternoon in Australia).

so, sounds like you've really got all the right team pulling for you and the only thing that's a problem is your fear of your fears and being worried? no?

So here I am, posting my fears since I don't know where else to turn. My family is super supportive but they just keep telling me it will be okay.

So I reckon what you should think about trying is clicking up there on Search:

and search each one of them out so you can read about it directly here ... I'm sure I've read about each one of those in my time here, just type in something like "the breathing tube"

reading about your history (which started I guess at 13) I can see why there are some latent fears in the mix, you haven't mentioned anything about siblings but perhaps its a good idea to sit and discuss those times and what you feel about them with people who went through them with you.

To me (so far) the best description I have for this period is "the fog" (no, not the movie) and you can see the fog you're approaching but can't see through or past it. You know that there is another side to the fog, but (as yoda would say) "difficult to see the future is" and so you feel some panic about the unknown things which trouble you (that maybe you didn't know about)

This is an old Australian movie and one of my early enduring favourites. I've just given you the poster to the movie, so like me you'll go into it with the wrong idea of what its about. I recommend if you do watch it, read nothing about it and just go along for the ride (with Harry Joy).

Just hold on to your faiths and your beliefs and what you know about life and forget about The Fog and keep saying to yourself the Litany of Fear (from the book Dune by Frank Herbert). Its a Bene gesserit Mantra:

"I must not fear"
"Fear is the mind-killer
"Fear is the little-death that brings total obliteration"
"I will face my fear"
"I will permit it to pass over me and through me"
"And when it has gone past I will turn the inner eye to see its path"
"Where the fear has gone there will be nothing"
"Only I will remain"

My family is super supportive but they just keep telling me it will be okay.

They're right you know ...

I hope you find some solace here

Best Wishes

 

[pellicle]

Oh and I'm guessing that this:

is what "will happen" not "what has already happened. You may find it interesting to read mine (and any other person who replies). FWIW, none of us need to know your birthday, but after this particular thread nobody will know you're 56 (now) and (assumes) in the future any questions you may have will be pretty dependent on that knowledge if we're to answer intelligently ... so I'd just replace that date with the year.

Anyway, I'm sure one of the ladies will be along to answer thing differently to this Ozzie Bloke.

Best Wishes

 

[Justmadi]

I, too, am from Wisconsin. I was 58 (I am now almost 72) when I had my first surgery at UW Madison hospital to fix an ascending aneurysm. That was an emergency as I had no clue I even had anything wrong, or a biscuspid aortic valve. A year later was a second surgery to fix another aneurysm and replace my valve with a st Jude mechanical.
When I look back I realize how lucky I was and am. Why?
Because we live in an age where this type of surgery can be done and done very successfully.
Was there pain? Some. Not as horrible as you might imagine. And it passes quickly.

this is an excellent forum to get answers.

I have to state my preference, however. Given your fear of surgery, I would opt for a mechanical valve. They have a very long life and the chance of needing another surgery because it fails is very slim to none.
The only con of a mechanical(and it’s not a very big con imo) is that you would need to be on warfarin . Because of the people here, I bought my own monitor and check my own warfarin level(INR) Game changer!!
In the end tho, the decision is between you and your surgeon.

Also…we have many veins and you will be at a facility that knows what to do. relax and know that you are in the best of hands.

Jeanne

 

[BrownEyes]

I, too, am from Wisconsin. I was 58 (I am now almost 72) when I had my first surgery at UW Madison hospital to fix an ascending aneurysm. That was an emergency as I had no clue I even had anything wrong, or a biscuspid aortic valve. A year later was a second surgery to fix another aneurysm and replace my valve with a st Jude mechanical.
When I look back I realize how lucky I was and am. Why?
Because we live in an age where this type of surgery can be done and done very successfully.
Was there pain? Some. Not as horrible as you might imagine. And it passes quickly.

this is an excellent forum to get answers.

I have to state my preference, however. Given your fear of surgery, I would opt for a mechanical valve. They have a very long life and the chance of needing another surgery because it fails is very slim to none.
The only con of a mechanical(and it’s not a very big con imo) is that you would need to be on warfarin . Because of the people here, I bought my own monitor and check my own warfarin level(INR) Game changer!!
In the end tho, the decision is between you and your surgeon.

Also…we have many veins and you will be at a facility that knows what to do. relax and know that you are in the best of hands.

Jeanne

Thank you, Jeanne. I have spent a lot of time searching the threads on each of my fears and already am starting to feel so much better! I am so glad I found this forum!

 

[Gail in Ca]

I’m sorry you’re so stressed.
I wanted to address your fear of the ICU. I have had 3 aortic valve replacements starting at age 34. For me, waking up in ICU was just fine. I had my own personal RN and she/ he took great care of me.
You find yourself awake, a fog clears, you realize it’s over and you have survived. It’s a wonderful feeling like no other.
As for the breathing tube, I asked the anaesthesiologist before my surgery to take it out before I wake up, so for #’s 2,3 it was already removed. I didn’t know I could ask this for my 1st surgery and did wake up intubated.
We all have some nervousness going into surgery or anything we haven’t experienced before. I was so nervous to have my only child because I had never done it before.
When I checked into the hospital each time, I knew I would go through this unknown and emerge with a fixed heart, and sent home to recover as if it never happened. After surgery is where this site has been so helpful to me. It gives us a chance to vent when our family and friends aren’t interested in specifics.
Husband thought I was fixed and back to normal. He didn’t want to talk about my experiences. But people here will talk about everything. It’s great. I hope this helps a bit.

 

[nobog]

Hi BrownEyes and welcome.

Looks like this is a Wisconsin thread - lol - a cold spell indeed - 15 deg F predicted for tonight.

You are too young for a tissue valve (the Great Debate on these forums) but data suggest at your age to get a mechanical valve. Lots of good advise on warfarin management here also (Pellicle for one).

Stay positive - millions (literally) have preceded you,

JK

 

[Kristianna]

Hi Everyone:

Hello from frigid Wisconsin.

I have been scouring the internet to deal with my stress, I was so thankful to find this site with so many of you sharing your experiences and ironically, some of the same fears I have. At 56, I may be one of the only women in the world that has never been in the hospital overnight. I have only had one surgical procedure in my entire life - in 2020 - to have my gallbladder removed by minimally invasive method with tiny 1 inch incisions. At 40, I found out I had a bicuspid valve during a stress test. At 45, I found out I was developing an ascending aorta aneurysm but was told that I probably would be 70 by the time they had to do anything about it. Over the last 2 years, both have started to decline rapidly particularly after I got covid, and last week I was told I would need open heart surgery soon to replace my valve and repair my aneurism. I am meeting with my surgeon next week. To be thinking about open heart surgery when I have no experience with surgery in general is very scary for me. I lost my dad at the age of 30 - and watched him go through multiple heart bypass surgeries starting when I was 13. I know technology and medicine are so advanced now, but memories of him in the hospital post-op still bring all this fear to my mind.

My niece is a cardiac nurse and has been trying to calm my fears, but I'm so stressed. I know this is stupid but I'm not worried about the heart surgery itself - I am going to have my surgery at Northwestern Hospital which is one of the best in our area. I am most worried about the weirdest things like:
1. Waking up with the breathing tube and fearing I will choke or won't be able to breathe
2. Waking up with all those tubes coming out of my body and then, having them removed when awake!! I can imagine this is going to hurt like hell.
3. Having multiple IV's in me. I just had 2 veins blown during my CTA scan last week and so now I have more anxiety about this! I am SO not good with needles and IV's!
4. knowing which heart valve type is the right one to have
5. Worrying about how long the valve will last and if I'm going to have to do it all again sooner than I expect if the valve starts to fail.

I go though periods of not being afraid and just wanting it to be over because I know my quality of life will be better when this is all done and I'm looking forward to moving on with my life and being able to eventually lift something without fear of my aorta exploding. I'm not worried about my recovery - I can deal with that kind of pain, drained energy, loss of appetite, limitations for a while, etc. I just know those first few days in ICU are going to be hell for me and that has me not sleeping well. I am in general a positive person but now I have these weird little moments of " pending doom" like - what if I don't make it? And I have problems planning anything beyond my surgery which is weird because I'm a planner. If anyone talks to me about doing something next year I change the subject and feel very strange like maybe I won't be there so why talk about it? Very strange emotions.

So here I am, posting my fears since I don't know where else to turn. My family is super supportive but they just keep telling me it will be okay. I am reading through posts so it's nice to know I'm not totally alone. So thankful I found you all and can read about your experiences.

I am in the same boat as you with many of the same fears! I will be 55 going through this and also have only had minor laparoscopic surgery and have one child which the labor I went through was rough but that is all I have had. I also found out when I was 46 with an incidental finding which shocked me as I never had any issues or even a murmur. I’m just trying to stay positive and strong and we can get through this, I know we will get through this just like all the wonderful people here have!!

 

[BrownEyes]

I’m sorry you’re so stressed.
I wanted to address your fear of the ICU. I have had 3 aortic valve replacements starting at age 34. For me, waking up in ICU was just fine. I had my own personal RN and she/ he took great care of me.
You find yourself awake, a fog clears, you realize it’s over and you have survived. It’s a wonderful feeling like no other.
As for the breathing tube, I asked the anaesthesiologist before my surgery to take it out before I wake up, so for #’s 2,3 it was already removed. I didn’t know I could ask this for my 1st surgery and did wake up intubated.
We all have some nervousness going into surgery or anything we haven’t experienced before. I was so nervous to have my only child because I had never done it before.
When I checked into the hospital each time, I knew I would go through this unknown and emerge with a fixed heart, and sent home to recover as if it never happened. After surgery is where this site has been so helpful to me. It gives us a chance to vent when our family and friends aren’t interested in specifics.
Husband thought I was fixed and back to normal. He didn’t want to talk about my experiences. But people here will talk about everything. It’s great. I hope this helps a bit.

Thank you so much Gail. This has made me feel better already!

 

[dick0236]

I am most worried about the weirdest things like:
1. Waking up with the breathing tube and fearing I will choke or won't be able to breathe
2. Waking up with all those tubes coming out of my body and then, having them removed when awake!! I can imagine this is going to hurt like hell.
3. Having multiple IV's in me. I just had 2 veins blown during my CTA scan last week and so now I have more anxiety about this! I am SO not good with needles and IV's!
4. knowing which heart valve type is the right one to have
5. Worrying about how long the valve will last and if I'm going to have to do it all again sooner than I expect if the valve starts to fail.

Welcome to this Forum. I can't offer much on your question #1,2,3,4 since my surgery was so long ago that I have forgotten the post-surgery discomfort.

At 56 your better shot for a "one and done" surgery is a mechanical valve. Mine is now about the same age as you are and my docs tell me my valve will outlast me.......I'm 89 (in about one month) now and my valve is about your age. FWIW, my mechanical valve has caused me no problem in my senior years.

When I had the surgery (1967) there was little, if any, info about this surgery, either pre or post op. This Forum is a Godsend for anyone looking for "real world" advice.......I knew it was for me when I found it about 18 years ago. Stick around after your surgery and lend your experiences to the new ones to the club.

 

[Paleowoman]

Hello BrownEyes - welcome to this wonderful forum !

It certainly can feel scary when you find out that heart surgery is on the horizon. I was 25 when I found out I had a bicuspid aortic valve but then nothing happened until I was 53 when I had to start having regular check ups and echos with cardiologist….when I was 60 he said I’d have to have the valve replaced. My imagination went into overdrive at the thought of open heart surgery and what would happen during it. As to some of your fears, I was very worried about the breathing tube and choking too but in the event when I woke up it was gone and I felt okay. Before surgery I asked my DH to take a photo of me asleep on the ventilator as I wanted to know what it looked like. I look quite peaceful asleep with it. There weren’t too many tubes coming out of my body, I’d imagined looking like a Borg from Star Trek but it wasn’t quite like that, and none of them hurt me when they were removed. I don’t remember any IV’s but I just had a look at another photo of me and there is one in my neck area, I’d never felt it. I was awake in ICU for one day and it was actually the best day in my hospital stay.

Knowing what kind of valve is the right one for you to have is something to discuss with your cardiologist and cardiac surgeon.

 

[V__]

@BrownEyes , welcome to the forum!

This is a serious ("major") surgery, which most people don't face frequently. So your emotions are quite natural. But as @nobog said, this is a "popular" intervention. The process is very well polished, the doctors and nurses really know what to do, and it has been very safe in recent decades.

My niece is a cardiac nurse and has been trying to calm my fears,

This is a big advantage! Your niece should be a great source of information!

1. Waking up with the breathing tube and fearing I will choke or won't be able to breathe

I was uncomfortable with the tube when waking up. This lased for a minute, until I realized that I actually was breathing (it didn't feel so at first, probably just because the tube messed up the air passage sensation).

2. Waking up with all those tubes coming out of my body and then, having them removed when awake!! I can imagine this is going to hurt like hell.

Well, they won't be all removed all at once. Something is removed every day, sure, but they have tricks and methods to make it better.

3. Having multiple IV's in me. I just had 2 veins blown during my CTA scan last week and so now I have more anxiety about this! I am SO not good with needles and IV's!

They should install temporary IV fixtures, which allow them to just connect a syringe to a fixture for a drug injection. Instead of puncturing the veins every time.

To be fair, the daily blood test did require new punctures. That's probably unavoidable.

I'm not worried about my recovery - I can deal with that kind of pain, drained energy, loss of appetite, limitations for a while, etc.

That's great. But preparing for the recovery and thinking it through might still help.

If you are amendable to meditation, it should be helpful to face the surgery. Also, starting to walk regularly (within your comfort zone) is probably beneficial. You'll have to walk during the post-surgical recovery anyway. Might as well start making it a habit

The outside walks in Wisconsin might be tough, of course. Perhaps finding alternatives (treadmill in a gym or getting one at home?) would help. I'd start thinking it through, if I were you.