New Member

[MattyO]

Hi everyone

I thought I’d best introduce myself. I saw some interesting and very supportive chats on here and thought it looked a good place for some friendly, wise words of encouragement. To give you a brief resume of my (medical) story, I had my first heart op in 1979 when I was diagnosed with a narrow aortic valve, a condition which was congenital. I was 14 at the time. It was a Valvotomy, and it pretty much changed my life overnight, breathing life back into what was a pretty miserable time for me. In 1994 I had a bout of endocarditis and spent three weeks in Hospital on IV anti-biotics, this was a result of a trip to the dentist where I had a tooth pulled.
Wind forward to 2001 and endocarditis came knocking at my door again, only this time it was a very bad bug and it pretty much ripped through my aortic valve. Not much fun. I was given around 50% chance of surviving the op, but thanks to the amazing people at St George’s Hospital in London I did, and after 8 weeks I got discharged. It took me a year to fully recover physically, but mentally the scars are still there and I have PTSD.
I have regular follow-ups, and they have usually been fine. the other week I had an echo, and I got a call from the hospital telling me they wanted me to come into see them at a clinic in a few weeks (I haven’t seen a cardiologist for four years, mainly because of COVID and they fact it’s affected the NHS). However I have been to a couple of nurse lead valve clinics. Anyway, the PTSD immediately kicks in and I start panicking. The man on the phone says there’s a change in the echo, there’s more of a leak and they want me to do a stress test. He also added there was nothing to worry about. I get palpitations, but I’ve had these all my life. I feel a bit more tired but I can still walk at a decent pace, climb stairs, lie flat on my bed without getting Breathless, and my ankles aren’t swollen (this is me going through all the symptoms!). However, I am aware that the tissue valve I have is now 22 years old and I’m due a redo at some point. Anyway, as I say, I wonder if any of you have wise words for me with re what lies ahead with the likelihood of me having to get cracked open for the third time! Thank you for listening!

 

[dick0236]

Hi MattyO. The first thing I noticed in your bio is that you and I were born on the same day, Feb 21 altho I imagine our year of birth is quite different as is our experience with heart surgery. I'm fortunate in that I got my mechanical aortic valve at age 31, have had no "hic-ups" and still have that valve at 87. There are many on this forum who have gone thru multiple surgeries and I'm sure they will come by and give some advice and encouragement. Your post has been up for several hours and I jumped in to get the ball rolling.

 

[MattyO]

Hi there dick0236 - thank you for those comforting words, and thank you for getting the ball rolling. Your valve sounds like it’s made of sturdy stuff! All the very best to you and have a great weekend.

 

[pellicle]

Hey there

About to hit the sack here in Australia, will post more in the morning,
First check my history...

https://www.valvereplacement.org/members/pellicle.12469/#about
and know that if a third operation is needed it's not a death sentence.

Have a listen to this presentation

https://bigthink.com/the-well/neuroscience-of-trauma/
We can put a steadying hand on the tiller

Perhaps also there is something here too

https://cjeastwd.blogspot.com/2016/11/looking-at-peal-of-bell.html
Best wishes

 

[MattyO]

Hey there

About to hit the sack here in Australia, will post more in the morning,
First check my history...

https://www.valvereplacement.org/members/pellicle.12469/#about
and know that if a third operation is needed it's not a death sentence.

Have a listen to this presentation

https://bigthink.com/the-well/neuroscience-of-trauma/
We can put a steadying hand on the tiller

Perhaps also there is something here too

https://cjeastwd.blogspot.com/2016/11/looking-at-peal-of-bell.html
Best wishes

 

[MattyO]

Hey there - first of all, as an Englishman, I appreciate you not mentioning the Ashes! This is very interesting - your history is quite similar.
At the same time they discovered my heart problems they discovered I had epilepsy (two for the price of one!). Any, as I say I shall have a look at this, and thanks for posting.

 

[pellicle]

Good morning

I don't know what happened but I suspect you replied and then just posted it, as I couldn't see anything in there

Hey there - first of all, as an Englishman, I appreciate you not mentioning the Ashes!

in all honesty I don't follow Cricket these days. Probably not since 1999

This is very interesting - your history is quite similar.

that's why I thought it would be helpful; to know that someone else has had a similar history. Its easy to feel isolated because you just don't know anyone who has been through anything remotely like this. I believe it makes getting any sympathetic communication going with friends more difficult; peple in general have no idea.

At the same time they discovered my heart problems they discovered I had epilepsy (two for the price of one!).

bargain!

Any, as I say I shall have a look at this, and thanks for posting.

hit me up with any questions and "you're welcome "

 

[MattyO]

Hi - yes, empathy is very important when it comes to these experiences. I’m getting the vibes I did when I was 14, when they originally told me I had problems. The first op was scary, the emergency not so because I was very I’ll and totally out of it. So the next couple of weeks will be…”interesting. Thank you for your kind replies

 

[Gail in Ca]

It’s great that you got 22 years from your tissue valve. You should be in a study!
My cardiologist started to see me more frequently and I had echos every year instead of every two years when I hit 9 years with my porcine valve. He used the average of 8-10 years that most got from that valve. I’m surprised your cardiologist hasn’t been more proactive in your care since you are way beyond what is average for the valve. Anyway, I’m glad you reached out to this forum. I, like some here, have had 3 successful surgeries.
My 3rd was a 2 surgeon job after I was treated for bacterial endocarditis from a nasty bacteria that they didn’t know that much about. Everything had to be replaced from 2 prior surgeries and also a mitral repair was added.
I’ve recovered well from my surgeries.
I hesitate to expand on the things that were a hiccup in my 2nd & 3rd surgeries since you state you have PTSD from yours. I did have issues before or during surgeries but I survived. I think most family and friends just expect us to go back to normal after these life changing surgeries. I tried to go with it but it was hard to pretend the surgeries didn’t affect me emotionally.
Anyway, you have a journey ahead. I would think you need to be treated with care by a good cardiologist and then a great surgeon.

 

[MattyO]

Hi there - thank you for those wise words. Endocarditis is no fun - I’ve had it twice, once from a tooth extraction, and once from a cut on my foot. The second time around it nearly killed me. Unfortunately the NHS has been extremely stretched, and I’ve been limited to phone appointments with the valve clinic. However, the only echo I have missed was last year. The surgeon who dealt with my emergency valve replacement (second bout of endocarditis 22 years ago) is an amazing individual as were the team. I had my echo two weeks ago, and I’ve got a clinic in a week or so. I have a lot of friends who work in the health service who have told me if they were really worried about the echo I’d be straight onto a ward. So that’s one thing I guess!

 

[LondonAndy]

Hi @MattyO , just wanted to extend a welcome from a fellow Brit! I think we are about the same age (I was born 1965) but beyond that my heart history is very different to yours: I had a mechanical valve inserted for stenosis about 10 years ago.

It does sound amazing that your tissue valve has lasted so long, which must bode well for how you will handle a replacement, whether tissue or mechanical. Having heart surgery is a worrying enough event without having PTSD, so I can understand your anxiety about the prospect of a redo. It feels totally inadequate for me to say that I expect you will look back after the operation and wonder what you were so worried about, but I'm sure none of us can avoid it before it's done. I wish you well.

 

[MattyO]

Hi Andy, hope all’s well with you. Thank you for this - the remarkable thing about it, was that it was an emergency and they couldn’t find the ideal valve for the size of my body! Anyway, as you say it’s done rather well thus far!

 

[treichert0312]

Hi there MattyO - similar story. My first surgery at age 11 for sub aortic stenosis- build up in ventricle. Valve replacement in 2014 at 48 yo - chose a bio valve at the time. Had complete recovery until valve failed - broke in 2022. Got the mechanical valve in June 23 and again fully recovered.
My issue has been Urethral stricture - not sure how they screwed up catheter of an 11 year old, but that was my case of PTSD. It seems resolved after 40+ years but just needed to carry on, as it were. Several friends have had similar issues related to prostate cancer issues but I digress.
I was concerned about having third OHS and potential issues, and my surgeon told me he has done 7 on a single person. For what it’s worth.

 

[MattyO]

Hi there treichert0132 - PTSD is no fun. Did they offer you EMDR treatment? I worked really well for me, and I’m a lot better now (most of the time!). That’s a heck of a lot of health issues to deal with mate - sounds like you’re doing well now. Whoah! Don’t like the sound of “valve broke”! What were your symptoms, if you don’t mind me asking?

 

[treichert0312]

My symptoms - it was a super active weekend. Friday, I rode my bike to work-46 miles round trip. Did volunteer work carting wheelbarrows of mulch uphill. Saturday ran a 10k and carried heavy ladder to remove toilet paper from tree in front yard. The girls softball team celebrated the last year boys varsity baseball players - my son played first base. Monday I cycled again the full trip to work.

Then on Monday night I noticed a very unusual rushing sound in my ears as I did my nightly plank session. I had tightness in the chest and knew something was wrong. Fuzzy on details if I went to hospital Monday or Tuesday night but they sent me home. Wednesday noticed some tightness in my chest, went back to ER and this time they kept me to really figure out what was wrong. Flailed valve was diagnosis. If it had been stenotic/calcified, they may have done TAVR because that was what I had planned with my pig valve. Fortunately I was not given that option - my only choice was mechanical.

When I first told my mom the whole situation - her opinion was that I should not have been so active. LOL. By forcing the issue, I was in great health going into surgery and bounced back really well.

That weekend happened mid-May. Surgery was scheduled end of August, so I had a couple months. But surgeon basically said anytime you want to come up, we’ll get you in. I was insistent I go back to where I had previous surgery done - stubborn like that.

In June, after my son’s graduation & parties were done, then I went in for surgery. Continued to work prior to surgery but significantly limited my activity. You mentioned blood pressure in another post - they had an automated bp machine at work. Not sure if it was accurate but I kept the readout: 102/38. I was not cognizant of many symptoms other than chest tightness. No dizziness or passing out.
I took a new job closer to home so the bicycle commute is 14 miles round trip - get to do that 5x a week. A 5 to 10 k run every weekend, longer bike ride as well - in decent shape. Weekly INR test, staying in 2.5-3.5 range for mechanical valve.
I am a satisfied customer.

 

[treichert0312]

Should have mentioned that the new job was a year post surgery, after recovery. Hope to be done with all that!

 

[pellicle]

Hi
somehow I missed your post (and also thought I'd sent something to you?). Anyway:

Your valve sounds like it’s made of sturdy stuff!

that's the old ball and cage blood cell smasher, looks like a kids snorkel from the 70's

C is what Dick has and A is the current tech, bileaflet valves. The material is no longer metal but pyorlytic carbon. B is a single tilting disc and you don't want one of them.

There isn't much for you to do in this surgery except to know that it works, sometimes there are bumpy landings, but soon enough its all just in the rear view mirror. I've had 3 iterations of OHS and different processes.

Best Wishes