How has surgery had an impact on family members

[Survived03]

I have recently included my family members in the latest discussion about my current aortic stenosis. After 19.5 years since having valve sparing aortic aneurysm repair, sometime in my future I will be having surgery again and most likely OHS. It's interesting how today's newest information has triggered anxiety that stemmed from the original surgery when they were much younger. Their current ages are 26-33. Overtime, a couple of my children have sought therapy for anxiety and the "professional" conclusions were that the cause could very well have been my original surgery and other related trauma associated with health within our family when they were all much younger.

Very long winded introduction so that I can ask all of you if you would mind sharing how your experiences have impacted your close family members. How have you managed the message in order to alleviate the stress and trauma for others?

Thank you in advance.

 

[pellicle]

My wife knew of my previous surgeries (before we even met) but when the news of the aneurysm and impending OHS for a bental (and my pretty rapid decision to pick a mechanical) it was all a lot for her to cope with.

She attended every consultation and only missed out being present for my angiogram and surgery.

She said she was so pleased to seem me in recovery in ICU. I wasn't much conversation ...

She was so pleased because she was so relieved. I would not want to put her through that again. She later said that some of the happiest moments of her life were in seeing me get better every day. She put on a brave face, but the fact is that she was scared shitless that I would die and she would be left without me.

She entertained herself in ICU while I wasn't replying.

 

[Survived03]

So that’s where you received the smiling digit. Awesome.

When I first saw my wife after I awoke I wished her a happy birthday. She was very scared but tends to be very stoic and strong outwardly. Weeks later she confessed that she knew I would live. She wasn’t sure if she would be pushing my wheelchair. Fair enough.

Another interesting side effect; I thought everyone who came to see me during day 1-2 were not divulging the entire truth. I kept asking what’s wrong. What are you not telling me? Anesthesia hangover I suppose.

Sadly, on day 3 of recovery my Dad passed unexpectedly. But my comforting thoughts were that I was fortunate to have spoken to him hours earlier. But let’s say it wasn’t my best days.

 

[pellicle]

So that’s where you received the smiling digit.

definitely her inspiration, but that's my own art work (her eye style is different to mine, I generally add a nose). To clarify the digit its my thumb (and its my right thumb because I'm a leftie),

 

[JohnStone]

My dad had a triple bypass when I was about 10. My memories were vague (he was gone from the house about 6 weeks, had a big scar, took lots of meds). I remember clearly the day my mom came to my school to let me know he made it through surgery. That’s about all I remember.
Flash forward to 40 yrs later & my husband in the hospital. Seeing him in the ICU brought back a flood of memories about my dad’s experience and the anxiety & fear I felt back then.
As a spouse, it has been tough. The worst moment was seeing him awake with a breathing tube frantically trying to communicate with me using his fingers. It was a horrible feeling to not be able to understand him (turns out, he just wanted some chapstick ). Honestly, my anxiety was so much higher before his surgery. The waiting truly is the worst.

 

[Gail in Ca]

My only child, my daughter, was 2 1/2 for my 1st surgery. She wasn’t allowed to see me in the hospital after I was dropped off. She was taken care of by a close older Aunt when my then husband visited me every day in the hospital. She really missed me. When I got home after a week she hugged me and wanted to see my scar! Someone must’ve told her more than I had.
She was 14 for my 2nd surgery and the memories weren’t good for her. They let her see me in ICU when my eyes were still taped shut. It freaked her out even though she was with my then husband, her Dad. My husband had gotten very angry at my family the day before for visiting me and staying too long, he thought. He only vented to me before my surgery. Not great for me, I wasn’t bothered by my family being there.
So, for my 3 rd surgery, I said I didn’t want visitors and they could come see me at home when it was over. My daughter had already asked me if it was okay that she waited until I got home to see me. The trauma at 14 was still with her. I even told my then husband he didn’t need to come every day. I was thinking I’d be fine. I felt so alone and even cried while walking the halls while recovering.
Luckily, 2 friends worked at Stanford and they came to see me. It uplifted me.
Final chapter, 5 years after my 3rd surgery, my husband unexpectedly announced he was leaving me and said it was because I’d changed since my last oHS.
So, I guess it’s quite hard on family members.

 

[pellicle]

So, I guess it’s quite hard on family members.

Gee Gail, that's a rough story ... as I began reading I thought "well that's not a bad idea", and indeed its how I was sheltered and gradually introduced a nearly died type car accident from a family member in my pre-teens. But then it went the other way.

I feel more and more that (compared to my grandparents era) that people are less resilient and more easily traumatised and prone to anxiety. Perhaps that there are so many "easy outs" (which is good for other things like protecting against DV) that this happens

I hope your music provided you something. I hope you don't suffer from abandonment issues (which are more common than we'd think) and focus on that you did nothing wrong. I know I felt similarly (abandonment and needed to rationalise frequently to dismiss that incorrect assumption by my subconscious) when my wife was taken from me.

Best Wishes

 

[preciosa1974]

My only child, my daughter, was 2 1/2 for my 1st surgery. She wasn’t allowed to see me in the hospital after I was dropped off. She was taken care of by a close older Aunt when my then husband visited me every day in the hospital. She really missed me. When I got home after a week she hugged me and wanted to see my scar! Someone must’ve told her more than I had.
She was 14 for my 2nd surgery and the memories weren’t good for her. They let her see me in ICU when my eyes were still taped shut. It freaked her out even though she was with my then husband, her Dad. My husband had gotten very angry at my family the day before for visiting me and staying too long, he thought. He only vented to me before my surgery. Not great for me, I wasn’t bothered by my family being there.
So, for my 3 rd surgery, I said I didn’t want visitors and they could come see me at home when it was over. My daughter had already asked me if it was okay that she waited until I got home to see me. The trauma at 14 was still with her. I even told my then husband he didn’t need to come every day. I was thinking I’d be fine. I felt so alone and even cried while walking the halls while recovering.
Luckily, 2 friends worked at Stanford and they came to see me. It uplifted me.
Final chapter, 5 years after my 3rd surgery, my husband unexpectedly announced he was leaving me and said it was because I’d changed since my last oHS.
So, I guess it’s quite hard on family members.

I am so sorry to hear that. You deserve much better.

 

[preciosa1974]

I just had surgery 12/22/22. It was supposed to be 12/19. I went back and all ready to go said bye to my 5 year old (who
Wouldn’t be able
To come back) and my husband waited. I had a horrible complication with anesthesia and bile was everywhere. I aspirated, threw up. The surgeon aborted. So after I was stable, about 1 hour or so after beginning my surgeon came out to
Talk to my husband in the consult room. My husband thought I died. He couldn’t hear nor see anything the dr was saying until he said “she’s stable now”. I woke up to an English lady staring at me “you didn’t get your surgery” in her cute accent. I was all out of
Sorts. It was very traumatic. I stayed in the hospital until 12/22 to heal my lungs and make sure there were no complications. My husband didn’t sleep
The night before nor I. It was nuts. My daughter was making herself sick (she’s 5) bc she couldn’t see me and was crying everyday. Anyways, the second procedure turned out
Well. My husband was
So happy to see them wheeling me in (breathing tube and all). Im home
Now. My daughter is happy but it’s hard bc I’m still in a lot of pain. My own family wasn’t really there for me, but my in laws have been incredible. I have definitely seen their care and love For me.

 

[Survived03]

My dad had a triple bypass when I was about 10. My memories were vague (he was gone from the house about 6 weeks, had a big scar, took lots of meds). I remember clearly the day my mom came to my school to let me know he made it through surgery. That’s about all I remember.
Flash forward to 40 yrs later & my husband in the hospital. Seeing him in the ICU brought back a flood of memories about my dad’s experience and the anxiety & fear I felt back then.
As a spouse, it has been tough. The worst moment was seeing him awake with a breathing tube frantically trying to communicate with me using his fingers. It was a horrible feeling to not be able to understand him (turns out, he just wanted some chapstick ). Honestly, my anxiety was so much higher before his surgery. The waiting truly is the worst.

Thank you for sharing

 

[Survived03]

I just had surgery 12/22/22. It was supposed to be 12/19. I went back and all ready to go said bye to my 5 year old (who
Wouldn’t be able
To come back) and my husband waited. I had a horrible complication with anesthesia and bile was everywhere. I aspirated, threw up. The surgeon aborted. So after I was stable, about 1 hour or so after beginning my surgeon came out to
Talk to my husband in the consult room. My husband thought I died. He couldn’t hear nor see anything the dr was saying until he said “she’s stable now”. I woke up to an English lady staring at me “you didn’t get your surgery” in her cute accent. I was all out of
Sorts. It was very traumatic. I stayed in the hospital until 12/22 to heal my lungs and make sure there were no complications. My husband didn’t sleep
The night before nor I. It was nuts. My daughter was making herself sick (she’s 5) bc she couldn’t see me and was crying everyday. Anyways, the second procedure turned out
Well. My husband was
So happy to see them wheeling me in (breathing tube and all). Im home
Now. My daughter is happy but it’s hard bc I’m still in a lot of pain. My own family wasn’t really there for me, but my in laws have been incredible. I have definitely seen their care and love For me.

Thank you for sharing and I wish you a speedy recovery.

 

[sarashreen]

I just had surgery 12/22/22. It was supposed to be 12/19. I went back and all ready to go said bye to my 5 year old (who
Wouldn’t be able
To come back) and my husband waited. I had a horrible complication with anesthesia and bile was everywhere. I aspirated, threw up. The surgeon aborted. So after I was stable, about 1 hour or so after beginning my surgeon came out to
Talk to my husband in the consult room. My husband thought I died. He couldn’t hear nor see anything the dr was saying until he said “she’s stable now”. I woke up to an English lady staring at me “you didn’t get your surgery” in her cute accent. I was all out of
Sorts. It was very traumatic. I stayed in the hospital until 12/22 to heal my lungs and make sure there were no complications. My husband didn’t sleep
The night before nor I. It was nuts. My daughter was making herself sick (she’s 5) bc she couldn’t see me and was crying everyday. Anyways, the second procedure turned out
Well. My husband was
So happy to see them wheeling me in (breathing tube and all). Im home
Now. My daughter is happy but it’s hard bc I’m still in a lot of pain. My own family wasn’t really there for me, but my in laws have been incredible. I have definitely seen their care and love For me.

I wish you a speedy recovery. What was the reason for anesthesia complications? Does this happen to everyone? I am scheduled for OHS in mid February

 

[preciosa1974]

I wish you a speedy recovery. What was the reason for anesthesia complications? Does this happen to everyone? I am scheduled for OHS in mid February

No this is very rare. I’ve never had issues before but apparently it was due to GERD that I have. I don’t think they’re quite sure either why it happened, but they were prepared for it. They auctioned my lungs and bronchioles right away. The anesthesiologists said they had never seen
It Like this before.

 

[Gail in Ca]

Thank you for the kind words. I came to realize a lot after my divorce. My daughter and I are in a better place.
Playing music has helped me to feel that life is good. When I rehearse or perform nothing else comes into my mind. It’s very cleansing and I sit next to people of like mind. The alto clarinet next to me had AVR a few months ago. We can talk about our experience. Then when the music starts, all is forgotten but the music. I’m so thankful I had parents who thought getting their girls into music was a great thing. My daughter plays piano and composes. This helps her as she has major auto immune disease. She recently graduated with her degree in philosophy. She loves philosophy. We live together and share much laughter and love. She attends my concerts. Our lives are good!

 

[TGM]

I’m the parent of a 20 year old with congenital heart defects. He has had 4 OHS. I read a study recently about stress. The researchers used mothers of children with heart defects as subjects as they are considered to be chronically stressed!! I can attest to that. Exercise has been the best stress reliever for me over the years. In addition, talking with others in a similar situation brings much comfort!

 

[Survived03]

I’m the parent of a 20 year old with congenital heart defects. He has had 4 OHS. I read a study recently about stress. The researchers used mothers of children with heart defects as subjects as they are considered to be chronically stressed!! I can attest to that. Exercise has been the best stress reliever for me over the years. In addition, talking with others in a similar situation brings much comfort!

Thank you for sharing. I can’t imagine the level of stress each your child has undergone surgery. Let alone their own stressful times. For what it’s worth, I agree with both statements regarding openly discussing with others AND exercise. I have told my family to ask me anything and I will answer as best as possible. I wish you well going forward.

 

[Superman]

I subscribe to the notion that when you have young kids, we’re in control of the messaging and things are as big a deal as we make them to be. My kids were all under eight years old during my last surgery. They all know that I had heart surgery. The older ones remember some stuff about me recovering at home. But we didn’t have them come see me at my worst. They stayed at home and we kept their routines as normal as possible.

They’re all well adjusted, doing great in school, two of my five are off to college now.

I feel like if I spent a lot of time going over the details to “prepare” them, it would have just built up the anxiety. As it is, Dad ticks and he sucks at being the tooth fairy because he always gets caught.

My first surgery was when I was 17. I found it a relief since I was expecting it my whole life. If my parents were worried, they didn’t let me see it.

 

[Survived03]

I subscribe to the notion that when you have young kids, we’re in control of the messaging and things are as big a deal as we make them to be. My kids were all under eight years old during my last surgery. They all know that I had heart surgery. The older ones remember some stuff about me recovering at home. But we didn’t have them come see me at my worst. They stayed at home and we kept their routines as normal as possible.

They’re all well adjusted, doing great in school, two of my five are off to college now.

I feel like if I spent a lot of time going over the details to “prepare” them, it would have just built up the anxiety. As it is, Dad ticks and he sucks at being the tooth fairy because he always gets caught.

My first surgery was when I was 17. I found it a relief since I was expecting it my whole life. If my parents were worried, they didn’t let me see it.

Very similar approach with our children during the first surgery. However, they are (were) very astute and seeing me during home recovery was hard on them. During the first week I was home with two of them when my wife needed to run an errand and I stood up and went straight down on my butt from a feeling that I was going to pass out. It scared the crap out of them and I wished they hadn't seen that. We also had to travel one week after surgery for a family death that was also sudden. I think all of this has had a lasting impact. Now that they are older they understand that there will be surgery in the future. I think it has triggered anxiety with the youngest but we are working through that. As I mentioned in an earlier reply, I have told them all they can ask me anything they want and I will be honest and open with them.

 

[dornole]

My situation is a little weird because I got heart failure from my (previously unknown) mitral stenosis when I got pregnant with twins. Less than 24 hours from being sent from urgent care to the hospital for an echo, finding out I had this thing, being admitted to the cardiac unit, then transported to a different hospital for a c section. My husband was deeply shaken by it. As they were wheeling me into the OR someone said “don’t you want to say GOODBYE to your wife?” Then when he was in the waiting room he overheard people discussing my case and giving me a 50% chance of survival. He was on the phone with my sister at the time and he screamed. He is normally very even keeled and stoic. After I did in fact live he had me and the twins to monitor and threw himself into communicating with all the doctors and informing everyone who would listen that I was fully insured. When I went for the repair a few weeks later he only had to wait a few hours as it was a balloon. For that one my cardiologist came out and told him “well that went about as bad as it could have without killing her.” Dunno what he was thinking cause I’m fine. But yeah lots of stress for him, but not long term. He does what needs to be done and now has additional experience from helping his parents with medical issues.

 

[Mr V]

My MVR was back in 1996 so the kids were only 6 and 8. My wife took the brunt of stress when my valve repair failed after 2 days. That happened on a Saturday and the OR's in the hospital were full operating on gunshot wounds I heard. The repair was blocking some flow so my lungs filled with fluid. Sounds like my O2 was down to around 10% before they finally operated again. It was bad enough for my wife but then some doctor thought she needed to hear he was surprised my organs hadn't shut down. Not something she needed to hear after what she went through. I had a terrific cardiologist though that helped my wife and I both get through the stress of going through that. They did brain scans too that showed no damage although wife disagrees with those