Second heart surgery; nervous

[zee112]

Hi Guys,

I'm on a waiting list on the NHS in the UK for my second cardiac operation, which may happen in March/April of this year.

I was born with Aortic Stenosis and underwent a Ross procedure at the age of 8.

I am now 23 and my aortic valve is severely leaking and my aortic root is dilated at 49mm.

I'll be getting a St Judes mechanical aortic valve along with a dacron graft for the root.

I don't have and classic symptoms with regards to my heart or any other severe health issues besides a small bout of acne and flat feet, and weigh 58kg at 5 foot 11.

I am quite nervous. the wait really stresses me out, and undergoing another heart surgery frightens me. I've been told the risk of death for me will be 2-3%, and because I have scar tissue, there is a chance that I could get a permanent pacemaker if the surgeon accidently cuts away at a nerve.

Has anyone been through more than one heart surgery? and could you share your experiences please?

Thank you!

 

[JulienDu]

Hi

I have a close experience to you.

I was also born with an aortic stenosis, a severe one, though i was feeling healthy. We decided to go for surgery when I was 10, and the surgeon did a repair on the valve. The repair was a great success, the valve was still in a decent shape after 20 years, could have lasted 30 years. However like you I was diagnosed with an aortic aneurysm measuring 4.9 cm in december. Surgeons advised me to repaiir the aneurysm as soon as possible considering that I do heavy duty work. I am just out of the hospital 4 days after surgery, everything went well beyond expectations for me and the surgical team ( for now... ). However I only wish to never have to live through that again and the 6 moths coming are also going to be tough cause I am a very active person with a rather risky life style.

Like you, I was scared to go for a second surgery. I was not scared by the surgery itself but from the souvenir of my first surgery. I had very bad souvenir, horrible ICU days, lots of pains, lots of nightmares and the hospitalisation that followed was also full of suffering and nightmares. For 2 years after this first surgery I had more nightmares than a normal kid. But I managed to live through that and I was a strong and healthy teenager. I think what build and amplified our fears of the second surgery is the trauma caused by the first surgery when we were only kids.

But let me tell you something :

1-We are young adult now. Our body is stronger. Our tolerance to pain is stronger. Our capacity to fight trauma is stronger. We are not growing anymore so your body will be focused in your healing rather than both your growth and healing

2-Anesthesia has done tremendous progress over the last 10 year. They control and understand your pain much better. In my case, my best day during my hospitalisation was my single and short ICU day. I had one nurse with me full time who would only take care of me. She would anticipate my need and my pain so well that I spent this entire first day talking with him and my wife. I had a very positive mind.

3-Surgery has done tremendous progress. They now have over 50-60 years experience of valve experience. Their equipment is better and their understanding of how to fit a valve is better.

4-Mechanical Valve are better. You have the new generation of valve that minimise the risk of clotting and the managment of INR is so much better. When you hear Dick0236 stories you wonder how he made it through so well. And his story is one of the most impressive and positive one.

5-Risks are still here and you are right to be afraid cause you are going through something tough.

You are in much better hand now and your choice of valve will drastically reduce the need of another surgery.

If it can help :

You can read my pre-surgery post here : http://www.valvereplacement.org/foru...to-way-of-life

And my post surgery post here : http://www.valvereplacement.org/foru...new-terminator

Also, try to read pellicle posts, he also had a surgery at our ages followed by two, he has tremendous experience and did some interesting research.

 

[pellicle]

Hi

yes I've had 3 OHS in my life ... my first was about 10 years old, my second at about 28 and my third at 48. On this surgery I got an ATS mechanical and a dacron graft for the aortic artery to repair an aneurysm.

I'll be getting a St Judes mechanical aortic valve along with a dacron graft for the root.
...
I am quite nervous. the wait really stresses me out, and undergoing another heart surgery frightens me. I've been told the risk of death for me will be 2-3%, and because I have scar tissue, there is a chance that I could get a permanent pacemaker if the surgeon accidently cuts away at a nerve.

these are all risks, but to be honest life in general is a risk. I can't say anything intelligent about the things which concern you (because they are real) but only to say that its less likely.

Not knowing much about your situation (and indeed about you) I can only say that what I've done each surgery is to prepare myself for any outcome (including not waking up).

You don't mention if you are concerned about being on anti-coagulation therapy after the valve but if you are be assured that its not actually a significant issue. I've led an active life since my last surgery to replace my aortic with an ATS.

Send me a PM if you'd like to have a chat on skype or something like that.

I live in Australia but spend significant time abroad. I will be returning to Finland later this year.

Best Wishes

 

[neil]

Hiya. Looks like you already had good info already. Whereabouts in UK are u ?

 

[zee112]

Thank you all for your advice, it has made me feel a lot better

neil, I'm from Birmingham.

 

[Paleowoman]

Welcome ! I'm from the UK too, near London. Hope you don't have to wait too long for your surgery, the waiting and not knowing when must be stressful in itself

 

[Superman]

Two open hearts here. One at 17, and one at 36. Replaced the valve the first. Valve and graft the second time. The second was tougher, but I was also a few years older, and the scar tissue was an issue. Not for any nerve issues, just that it was harder to saw through the sternum. I don't think I bounced back as quickly either - but again - age, etc.

I'm already over six years out from the second and things are going fine. I get annual check ups and that's about it.

 

[JulienDu]

I was reading your post again Zee112 ( yeah I know I am bored at home ) and forgot to mention that if you did not have any symptomes of your issues and if your heart was perfectly normal, your chance of survival and fast recovery increase. Ask your cardio about that, mine and the surgeons told me the same.

 

[Jkm7]

I had my first Heart surgery, all was fine and four years later, I learned I had developed bad mitral valve regurgitation and needed a second surgery.
Like most, of course, I was nervous. Who wouldn't be? No one wants to face OHS and anyone who doesn't have some nerves about it is quite rare.
As it turned out, the second surgery went great, I recovered quickly with no complications and it was actually easier on me than my first surgery. I recovered
very quickly and well and it is now about 8 years later.

I wish the same good results for you.

 

[zee112]

I will be going in for a pre-surgery assessment in two days time, for a chest x-ray, blood tests, medical exam etc. I've been in touch with the waiting list manager at the hospital where I'll be having the surgery. She will let me know around mid next week of an official date for sometime in April. Things are progressing very quickly. I'll keep you guys updated

 

[epstns]

I think you've gotten some good insights from the group who have experience with multiple surgeries.

I can try to put your mind at ease about the possibility of having a pacemaker. I never "expected" to need a pacemaker, but after my aortic valve replacement, my heart would not settle down. It went very fast, then very slow, then afib, then it would just stop for 15-20 seconds at a time, then re-start and rattle around some more. My surgeon, electrophysiologist and I discussed the problems. They felt that they "might" be able to settle things down with meds. This could be a long process (for me), and there were no guarantees. They said that my option was to consider a pacemaker. Since my mother had a pacemaker for years with no issues, I just asked the docs "What are you waiting for?"

To make what could be a very long story into a short one, I'm very proud and outspoken now to tell people that the only time I really notice that I have the pacemaker is when I see myself in a mirror with my shirt off. I just do not "feel" it during everyday life. I work, do home improvements, go to the gym, drive, even operate a ham radio transmitter, and just have no sense that the pacer is doing anything. Yes, I can see it. Yes, I can feel it if I rub that portion of my chest. Yes, it took us a while to get all of the features and adjustments set just right. But after a short while, it quickly became a big non-issue. I've had it just over 5 years now, and expect to replace it within the next couple of years. All I have to do for it is take it (and myself) to the device clinic twice a year for interrogation (they just place a transducer ring over the device and read its mind).

So, if you are faced with the decision of whether or not to accept a pacemaker, I'd recommend that you just tell them to go ahead and put it in. Be sure to have a conversation with them about your activities and your lifestyle, so that if there is a choice, they can choose a model that will most naturally support your lifestyle, but certainly don't worry that having one will somehow mess up your life.

If you want to chat about specifics, just PM me.

 

[Seaton]

Hello zee112 .

Just catching up on your posts.

I'm from the UK too – London. Under the care of St Thomas' Hospital.

I'm still a member of the 'before' club. No cardiac related surgeries yet, but edging closer, I believe. I find almost everything I read here a help, in one way or another.

I wish you all the best as this progresses and look forward to your updates.