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Mirthful16

New member
Joined
Jun 22, 2022
Messages
3
Location
Ohio
Hello everyone!

I have been reading posts for a few weeks and I figured it's time to post my own story. I have a bicuspid aorta (found when I was very young) with stenosis, severe regurgitation, and an enlarged ascending aorta (phew, ha). I feel fortunate that I have made it to nearly 42 without needing surgery or experiencing complications. I have 2 beautiful girls (closely monitored during pregnancy and postpartum) and live a happy, active life. I love hiking, yoga, biking, and camping (not good at any of them but I enjoy it!) Back in January, I began to notice a change. Slowly I noticed fatigue, SOB, episodes of dizziness, and overall just not feeling myself. I have been a nurse for 17 years (spent half of those in the ICU and now I work in the schools) and it never dawned on me that this was my heart. I thought for sure I was just getting out of shape or old! ha. My echo in June confirmed my valve was worse, my aorta was more enlarged (4.9)...what a bummer. My cardiologist sent me off to the valve clinic and here we are. I have had some weeks to process all of this. I always knew it would happen and my guess is no matter the age it always hits hard and feels too soon.

I am scheduled for surgery on September 19th. Holy cow! It definitely feels real when I look on"my chart" online and see the procedure and date. Phew. I will be a proud owner of a St. Jude valve and ascending aorta (and a large incision to prove it). I am having good days and bad. Mostly somewhere in the middle. Honestly, I am just ready to get it over with. It's always loomed over me. I have loving, supportive family and friends. Our girls are 7 and 11 years old and handling it fairly well. My 7-year-old has been nervous and asking lots of questions.

It's been really nice reading everyone's posts on here. The good, the bad, the ugly.... it really helps to know I am not alone. I am worried about what it's going to feel like when I wake up and I am nervous about waking up intubated. I have 1 other surgical experience and it wasn't pleasant. Also worried a bit about how loud will my valve be...I am not overly worried, more curious I suppose. I am trying to prep and plan as much as possible (mainly to keep my mind occupied). Ordered PJs with buttons/zippers, books/journal, new post-op bras, a pillow, and organized an area downstairs for me to sleep for a while. It's hard to hand over your life to so many people around you.

Despite the fears, I am so thankful to live during a time when I can get this fixed and live a happy, productive life and watch our children grow up. Am I scared? Yes. Actually, I am terrified.....mostly of the unknown and what-ifs. But we all know we can't control the unknowns and what-ifs. So here I am, thankful my heart has taken me on wonderful adventures this far and hopeful the 2.0 version will take me on many more.

Now I need to get keep and stay rested in preparation for surgery.

Best wishes to everyone!

Kate
 

ejc61

Well-known member
Joined
Jun 24, 2010
Messages
291
Location
Atlanta, GA
Well my surgery was different than yours, but it was my first and was, of course, scary. I was 47 yo. But I did well. You definitely lose track of time by the time you enter the OR, count backwards from 100, I got to 95, to the time you wake up in ICU which was about 5 hours later still with tubes in. Tubes were taken out around 4 hours after that so, in my case, about 9 hours from start of surgery to tubes coming off. I was a in ICU but groggy. By next morning, staff had me to try to walk with walker. I probably went 3-4 feet in about 15 minutes. They said I did well. My spirometer, at this time, registered about 500. I was told that was gold. It was better than I though. But as a nurse, you know this. But as a patient, be the patient. My wife is a nurse so I know a little bit how nurses don't always think of themselves. Once I got to my regular room the next afternoon, I tried to walk as much as possible for the next several days until discharged. Resting and chilling out before hand is recommended. Good luck.
 
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KLS39

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Dec 21, 2021
Messages
89
It's been really nice reading everyone's posts on here. The good, the bad, the ugly.... it really helps to know I am not alone. I am worried about what it's going to feel like when I wake up and I am nervous about waking up intubated. I have 1 other surgical experience and it wasn't pleasant. Also worried a bit about how loud will my valve be...I am not overly worried, more curious I suppose. I am trying to prep and plan as much as possible (mainly to keep my mind occupied). Ordered PJs with buttons/zippers, books/journal, new post-op bras, a pillow, and organized an area downstairs for me to sleep for a while. It's hard to hand over your life to so many people around you.

Despite the fears, I am so thankful to live during a time when I can get this fixed and live a happy, productive life and watch our children grow up. Am I scared? Yes. Actually, I am terrified.....mostly of the unknown and what-ifs. But we all know we can't control the unknowns and what-ifs. So here I am, thankful my heart has taken me on wonderful adventures this far and hopeful the 2.0 version will take me on many more.



Kate
Kate,

Welcome to the forum.

As a nurse you are already more prepared for this than many of us were.

I had my first surgery at 14 to repair my aortic stenosis and my second surgery last year at 58 to replace the valve with a mechanical one and to take care of an ascending aneurysm and repair my innominate artery which was enlarged. If I had found this forum before surgery I would have asked more questions. I guess I was thinking I had been through it before and was more or less prepared. I don't remember waking up after my first surgery. This time I woke up and was intubated which freaked me out. I had been doing mindful meditations specifically for surgery and that saved me. I went in for surgery on the morning of March 5 and woke the next morning. I was so filled with fluid that my tongue swelled and they kept me sedated overnight. I had over 20 lbs of fluid in me and could barely move my hands. Totally didn't expect that. A thread that may help is After your surgery, what are some of the things that you found out that surprised you.

I found the post op bras to be great for quite a few months after surgery. Now that all the nerves have healed, I am still on the search for a comfortable bra. Everything I try (including the post op bras) hurts the bottom of my scar especially if I am sitting for any length of time.

As a wife and as a mom to four children I was always taking care of everyone else. It was difficult to ask for help but I had no other choice. I was lucky to be so well cared for by my family.

I will be thinking of you on September 19.

Best wishes.

 

Zoltania

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Feb 16, 2015
Messages
244
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SF Bay Area, California
Hi Kate,

Everyone's experience with waking up is different. If you read the archives of the post-surgery forum, you'll learn more about how things went for various people.

Personally, I found that being prepared in this way helped me greatly. When I woke up, I knew the breathing tube would feel a little like breathing through a straw, I knew not to fight it, and I was able to time my own breathing to match the machine's. This helped me to stay calm so I could focus on the loved ones who were around me.

The nurses were all wonderful. I always felt cared for. I'm sure you provided the same service to your ICU patients; now it will be your turn.

It sounds like you are very well prepared for the practical side of things. No one likes facing the unknown, but it's like being on a roller coaster cresting the first hill. Once the ride really gets moving, you can't get off, and the ride might have scary spots, but you will pull into the station having gained experience and a newly improved heart, and the waiting will be over. It's much easier to deal with tangible challenges than with fear of the unknown.
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
1,694
Welcome to the forum Kate.

I feel fortunate that I have made it to nearly 42 without needing surgery or experiencing complications.

You've got a great attitude going into this. That is certainly one of the most important factors.
I will be a proud owner of a St. Jude valve and ascending aorta

I have a St Jude and a new ascending aorta, as of 17 months ago. Welcome to the club!

I am worried about what it's going to feel like when I wake up and I am nervous about waking up intubated.

Some do have a bad experience with this. Mine, as far as I am aware, was taken out when I was still under. If I was awake, I was certainly not fully awake, as I have no memory of being intubated.

Despite the fears, I am so thankful to live during a time when I can get this fixed and live a happy, productive life and watch our children grow up

That's the right attitude and it is so true. We truly are fortunate that our condition has a solution and that the vast vast majority of us go on to live normal lives afterwards.

Best of luck with your procedure. Before you know it you'll be on the other side, enjoying your kids and eventually getting back to hiking, yoga, biking and camping. Once you go through your recovery, you just might feel better than ever. It is a journey and I encourage you to look at every step in the recovery process as a victory to celebrate.

I look forward to your update from the other side. :)
 

DebraB

Member
Joined
Jun 3, 2022
Messages
11
Hi Kate,
I was so scared about the tube down my throat! But I figured It wouldn't be in for too long. I have zero memory of that tube! The nurse told me that she asked if I wanted it taken out and I just waved her away lol.

For me, the worst part was expecting to feel so much better as soon as the valve was replaced and realizing it was a slow process to heal. But every week I got better. My surgery was May 27th and I would say it took me about 2 1/2 months to feel close to normal. But I feel so much better now, and you will get through it!

Definitely make plans for your recovery at home. We're all different but I didn't want to do much more than watch tv lol.

Best of luck!
Debra (coarctation of the aorta at 7, aortic valve replacement surgery at 57)
 

oo0Michael0oo

Member
Joined
Aug 18, 2021
Messages
23
Location
United States
Hello everyone!

I have been reading posts for a few weeks and I figured it's time to post my own story. I have a bicuspid aorta (found when I was very young) with stenosis, severe regurgitation, and an enlarged ascending aorta (phew, ha). I feel fortunate that I have made it to nearly 42 without needing surgery or experiencing complications. I have 2 beautiful girls (closely monitored during pregnancy and postpartum) and live a happy, active life. I love hiking, yoga, biking, and camping (not good at any of them but I enjoy it!) Back in January, I began to notice a change. Slowly I noticed fatigue, SOB, episodes of dizziness, and overall just not feeling myself. I have been a nurse for 17 years (spent half of those in the ICU and now I work in the schools) and it never dawned on me that this was my heart. I thought for sure I was just getting out of shape or old! ha. My echo in June confirmed my valve was worse, my aorta was more enlarged (4.9)...what a bummer. My cardiologist sent me off to the valve clinic and here we are. I have had some weeks to process all of this. I always knew it would happen and my guess is no matter the age it always hits hard and feels too soon.

I am scheduled for surgery on September 19th. Holy cow! It definitely feels real when I look on"my chart" online and see the procedure and date. Phew. I will be a proud owner of a St. Jude valve and ascending aorta (and a large incision to prove it). I am having good days and bad. Mostly somewhere in the middle. Honestly, I am just ready to get it over with. It's always loomed over me. I have loving, supportive family and friends. Our girls are 7 and 11 years old and handling it fairly well. My 7-year-old has been nervous and asking lots of questions.

It's been really nice reading everyone's posts on here. The good, the bad, the ugly.... it really helps to know I am not alone. I am worried about what it's going to feel like when I wake up and I am nervous about waking up intubated. I have 1 other surgical experience and it wasn't pleasant. Also worried a bit about how loud will my valve be...I am not overly worried, more curious I suppose. I am trying to prep and plan as much as possible (mainly to keep my mind occupied). Ordered PJs with buttons/zippers, books/journal, new post-op bras, a pillow, and organized an area downstairs for me to sleep for a while. It's hard to hand over your life to so many people around you.

Despite the fears, I am so thankful to live during a time when I can get this fixed and live a happy, productive life and watch our children grow up. Am I scared? Yes. Actually, I am terrified.....mostly of the unknown and what-ifs. But we all know we can't control the unknowns and what-ifs. So here I am, thankful my heart has taken me on wonderful adventures this far and hopeful the 2.0 version will take me on many more.

Now I need to get keep and stay rested in preparation for surgery.

Best wishes to everyone!

Kate
Hello. I may be quite opposite in many ways. Never expected heart surgery. Thought I would just have murmur for life. Worked so much when hearing inevitable surgery due I thought mandatory vacation. I never worried about the surgery I had to take care of prep and post life on my own, no family. Not even lying on the table as final moments arrived did I spend a second on concerns with the surgery. Having my life in medical hands didnt worry me before I needed to take care of things so I didn't have to after. But post surgery it presented concerns. ICU offers no privacy. I relished the day I could recline with the wound and muscles I never knew existed without pain I fell asleep instantly. Has taken over one year to feel the normal I knew pre-surgery but I still have symptoms which lead me to doctor then surgery. I gather I am an exception to the general experience. The best to you and yours!
 
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Croooser

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Supporting Member
Joined
Apr 21, 2021
Messages
78
The success rate is very high. If you check the numbers, they should inspire confidence.

My experience. Nurse woke me up in ICU and told me they were going to remove the tube. Even heavily medicated I knew what that meant. She took it out. I puked, but they were ready with a tray. They said OK. I went back to sleep.

There is a very high probability that you will not have to worry about heart issues for the rest of your life.

Now as for the 7 yo and 11 yo, I am not going to lie. The fun is just starting🙃.
 

dick0236

Eat the elephant one bite at a time
Supporting Member
Joined
Feb 10, 2007
Messages
3,364
Location
louisville, KY USA
Despite the fears, I am so thankful to live during a time when I can get this fixed and live a happy, productive life and watch our children grow up. Am I scared? Yes. Actually, I am terrified.....mostly of the unknown and what-ifs. But we all know we can't control the unknowns and what-ifs. So here I am, thankful my heart has taken me on wonderful adventures this far and hopeful the 2.0 version will take me on many more.
Welcome, Kate. We all understand your feelings because we have all been there........and successfully gone on to have happy normal lives. Ask whatever questions you have and I have no doubt that someone on this forum has experienced something the same or very similar. BTW, I had two little boys when I had the surgery.......and they have given me three grandkids and 5 great grandkids.....so you have a lot to look forward to.
 

DJ-Rae09

Well-known member
Joined
Apr 26, 2022
Messages
63
Good luck with your surgery and recovery :)

I was in the same position to you just recently. I'm 42, on the 29th of July I had the mechanical valve (Medtronic) and graft installed to replace my BAV, aortic root and ascending aorta (bentall procedure). All went fine with the operation and recovery. I'm now 6 weeks out and feeling pretty much back to normal.

See you on the other side :)
 

Mirthful16

New member
Joined
Jun 22, 2022
Messages
3
Location
Ohio
Good luck with your surgery and recovery :)

I was in the same position to you just recently. I'm 42, on the 29th of July I had the mechanical valve (Medtronic) and graft installed to replace my BAV, aortic root and ascending aorta (bentall procedure). All went fine with the operation and recovery. I'm now 6 weeks out and feeling pretty much back to normal.

See you on the other side :)
This is EXCELLENT news!! Thank you. So glad to hear you are doing well. 😊
 

Timmay

Grandfather Clock
Supporting Member
Joined
Apr 22, 2022
Messages
100
Location
Frederick, MD
Good luck Kate! You got this. I'm a bit over 3 months since surgery (mech valve) and I'm back to running (a bit), lifting weights, etc. Everyone's experience is different. The first week of recover was hard. The second week got easier. At 4 weeks I was feeling confident. 5-6 weeks was a game changer for me.

... and all in all, that recovery time is just a drop in the bucket compared to my whole life ... and well worth the second chance at life. We are so blessed to live in an age when medical professionals can do something like this. I'm still in awe.
 

70sdiver

Active member
Joined
May 13, 2019
Messages
38
Location
Richland wa
I remember the drive to Seattle the day before surgery, man how surreal that seemed .That was on the 17th of august so I'm just at my one month date. I checked in at 5:15 am and was taken back to the prep area at 5:30.I was meeting a lot of people that were going into the surgery with me all asking me question ,a lot were the same questions it seemed pretty quick that I had My IV's in place and then I was in the surgery room. Then it was ok take a deep breath and then it was waking up . I know the waiting is the worst part of the whole deal. We are all here with you!!
 

treichert0312

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Jul 31, 2022
Messages
24
Location
Dayton Ohio
My surgery was 6/19 - just three months ago. Feeling better every day. I figured I would need to find new hobbies, that my running, biking, skiing days would all be over.
Not so!! Since surgery I’ve had the Covid, now fighting through a UTI, but been on the bike, been running, and looking forward to skiing.
This one was my three-peat - fingers crossed that you are one & done! Good luck - wishing you the best!
 

newarrior

I have mild moderate Aortic Stenosis live Bangkok
Joined
Jun 28, 2019
Messages
550
Location
Bangkok Thailand
I remember the drive to Seattle the day before surgery, man how surreal that seemed .That was on the 17th of august so I'm just at my one month date. I checked in at 5:15 am and was taken back to the prep area at 5:30.I was meeting a lot of people that were going into the surgery with me all asking me question ,a lot were the same questions it seemed pretty quick that I had My IV's in place and then I was in the surgery room. Then it was ok take a deep breath and then it was waking up . I know the waiting is the worst part of the whole deal. We are all here with you!!
Thanks for sharing--and congrats--how are you now ?
 

newarrior

I have mild moderate Aortic Stenosis live Bangkok
Joined
Jun 28, 2019
Messages
550
Location
Bangkok Thailand
My surgery was 6/19 - just three months ago. Feeling better every day. I figured I would need to find new hobbies, that my running, biking, skiing days would all be over.
Not so!! Since surgery I’ve had the Covid, now fighting through a UTI, but been on the bike, been running, and looking forward to skiing.
This one was my three-peat - fingers crossed that you are one & done! Good luck - wishing you the best!
thanks for the great post !
 
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