30M, Aortic aneurysm, Bicuspid valve.

[nh4815]

Hello everyone!

Ive been lurking on this website for a while now and it has been such a helpful resource and abated my anxiety so many times.

I am 30 years old. In 2020 I was diagnosed with epilepsy and in 2021 I was hospitalized after a seizure where a test has found I had the remnants of an "anterior infarct". So my neurologist referred me to a cardio surgeon(I live in a medium sized town and she doubles as both the surgeon and cardiologist.) She gave me a Zio patch and called it a day. The patch turned up with nothing and that was that.

A month or so later, I began having chest pain and thank god for my partner twisting my arm into going to the ER cause then I was diagnosed with an ascending Aortic aneurysm that was at 4.8 as well as a bicuspid valve. Nothing popped up on the genetic testing. So my doc had put me in the "general connective tissue disorder" category.

Since then we have been monitoring it's growth until this past February I got into Cedars Sinai and am finally slated to have surgery this upcoming Wednesday. The surgeon there had concluded that I technically have three flaps in my valve but that two of them are stuck together and act as one. He doesn't feel I need the valve replaced for another handful of years and is going to repair my ascending aortic aneurysm.

I'm absolutely terrified of the surgery but paradoxically thankful that I finally have this certainty I've been craving since being diagnosed.

It's not so much the surgery on my heart itself that scares me, it's the sternectomy and recovery that terrifies me.

I am so thankful to have had the ability to read all of the stories here as they have really helped me manage my own feelings of anxiety. Thank you all

 

[Survived03]

The surgeon there had concluded that I technically have three flaps in my valve but that two of them are stuck together and act as one. He doesn't feel I need the valve replaced for another handful of years and is going to repair my ascending aortic aneurysm.

First off, welcome to the board. In 2003 I had valve sparing aneurysm repair. In addition to the aneurysm I had a bicuspid aortic valve. It lasted 20 years and 13 years past the current data. But I did eventually require BAV replacement surgery in 2023 and most likely you will too. I was 63 years old and decided on a bovine bio valve. I may outlive this valve and perhaps be a candidate for valve in valve via TAVR. But nothing is a given. You should think thoroughly about your age and future surgeries. I admit, my second surgery was much easier than the first but that is not always the case.

It's not so much the surgery on my heart itself that scares me, it's the sternectomy and recovery that terrifies me.

You will be surprised how quickly you recover if you go into it healthy, with a positive attitude and follow ALL of the recovery steps. Walk, walk some more and when you are done, walk some more. There are numerous posts here that describes post surgery and you should take some time to read them. Expectations can be very useful in the process. I won’t sugar coat it, it’s not a walk in the park but with proper care, real expectations, and management of pain, you will have it all behind you in no time at all. Good luck.

 

[Chuck C]

Welcome to the forum.

Sorry to hear about your diagnosis, but glad that the issue was discovered and that you're getting surgery to repair your aneurysm.

this past February I got into Cedars Sinai and am finally slated to have surgery this upcoming Wednesday.

Is that Cedar Sinai in Los Angeles? So, does that mean that you're travelling from Oregon to LA to get your surgery? Cedar Sinai has an excellent reputation. I had a surgical consult there and they were definitely on my short list of hospitals to get my surgery.

It's not so much the surgery on my heart itself that scares me, it's the sternectomy and recovery that terrifies me.

It is not easy, but it is not as bad as you might imagine. There are a number of threads with advice about what to bring and things in recovery that can make your journey a little better. As SurvivedO3 indicated, walk a lot in recovery. Also, you want to be sure to use the incentive spirometer, which they will introduce you to in ICU. Make sure to use it as often as they tell you to use it, as it is critical to get your lungs opened back up as soon as possible.

I would suggest taking joy in each little victory you experience during your recovery. You should see improvement each day of recovery and before you know it this whole chapter will be a thing in your rear view mirror.

Best of luck on Wednesday for an uneventful procedure and recovery! Please keep us posted on how your journey is coming along.

 

[pellicle]

It's not so much the surgery on my heart itself that scares me, it's the sternectomy and recovery that terrifies me.

it needn't.

having been through it 3 times now I can say that sure it slows you down, and sure there's some amount of discomfort, but to be honest when I put my lower back out on the ride on lawnmower it was worse and more debilitating.

Despite how the modern world coddles and addles us, we are made of tougher stuff. I live out in the countryside now and the strength and resilience of the people who live and work out here reminds me of my own origins.

I live not far from this (long abandoned) shack:

I know how windy and frosty it gets there (no snow, but that's warmer than sleet and freezing drizzle.

Yet here they lived with no power and kero lamps.

The soft world of the city makes for anxious and afraid peoples I find.

Dig inside yourself and find the same human that was inside people in 1883 (to add an American slant to this).

Best Wishes

 

[nh4815]

Thank you so much for your words of encouragement everyone. Tomorrow's the big day, I got my chlorohexidine soap and I'm gonna try and get some rest!

I'll share an update as soon as I can.

 

[pellicle]

Tomorrow's the big day,

You've got this

See ya on the other side

 

[jimbob123]

Thank you so much for your words of encouragement everyone. Tomorrow's the big day, I got my chlorohexidine soap and I'm gonna try and get some rest!

I'll share an update as soon as I can.

It's a one-off for you; your surgical team does it every day. Looking forward to hear the story in a day or two.

 

[SD Surfer]

You got this!!

I had my bicuspid Aortic valve replaced Nov. 27th and was surfing again on March 10th. (and that's at 61 years old)

Yeah, the sternectomy is not something I'd do for fun, but if you follow Dr's orders and don't do anything to compromise it, it's not as bad as you'd expect.

I was able to stop the Oxy and go with just tylenol before leaving the hospital. You'll be amazed at your body's ability to recover from this.

Do your breathing exercises constantly, and when you feel like you can get up and walk... get up and walk.
When you don't feel like you can get up and walk... get up and walk.

You'll be back and better than ever very soon.

 

[Zoltania]

I think it's "sternotomy." "Sternectomy" sounds like removal of the sternum, which would be less than desirable.

 

[pellicle]

which would be less than desirable.

back in 2013 I was told that was stage 3 if stage 2 didn't work. So yes, less than desirable. Happily here I am with it all intact still

https://www.ncbi.nlm.nih.gov/pmc/ar...es partial or,sternum to remove infected bone

 

[SD Surfer]

I think it's "sternotomy." "Sternectomy" sounds like removal of the sternum, which would be less than desirable.

Well no wonder it hurts so flippin' bad!

 

[AZ Don]

I had a (Bicuspid aortic) valve sparing aneurysm repair done almost 11 years ago now (at 51). The valve went from well functioning before the surgery to mildly leaking to moderately leaking within the year. I thought for sure it would never last 10 years but it's still stable and my numbers are better than the first couple years after the surgery. While it is likely you will need another surgery some day there are all kinds of new prospects coming up, from mechanical valves that don't require anti coagulants (Foldax is in trials) to custom made or grown valves.

Do this:

Do your breathing exercises constantly, and when you feel like you can get up and walk... get up and walk.
When you don't feel like you can get up and walk... get up and walk.

The first time I got up to sit in a chair I thought I'd never be able to walk. But soon I was walking all around.

Best wishes on your recovery.

 

[SD Surfer]

I had a (Bicuspid aortic) valve sparing aneurysm repair done almost 11 years ago now (at 51). The valve went from well functioning before the surgery to mildly leaking to moderately leaking within the year. I thought for sure it would never last 10 years but it's still stable and my numbers are better than the first couple years after the surgery. While it is likely you will need another surgery some day there are all kinds of new prospects coming up, from mechanical valves that don't require anti coagulants (Foldax is in trials) to custom made or grown valves.

Do this:

The first time I got up to sit in a chair I thought I'd never be able to walk. But soon I was walking all around.

Best wishes on your recovery.

I remember my first walk in ICU was about 40' with the nurse pushing the freaking recliner from my room right behind me in case I got tired!

Next time was 80-100 feet, and so on.

When I got downgraded and moved over to the regular cardiac ward and started walking the halls (one lap around was like 330' I think) I noticed they had a magnetic white board by the nurse's station with all the room numbers listed in a grid and a magnetic horseshoe next to each room #...

Each lap you made you got to move your horseshoe one space... Oh, we got us a horserace, it's ON now!! I have to do more laps then anybody else now!!

Sometimes being overly competitive can be a good thing.