Third OHS

[Guest]

Hi all,

I am 28 and going in for my third OHS to replace an aortic valve. My first two were to remove sub aortic-stenosis. Anyone of similar age on their third surgery?

Best,

 

[almost_hectic]

Holy smokes, you must be a pro at this by now!

 

[Dylanm111]

Not something I want to go through again!

Any suggestions on what valve they will replace my own valve with?

 

[pellicle]

Hi Dylan

At 28 I was on my second (first was about 10). I would hope that they will give you a mechanical valve, probably one of the newer pyrolytic carbon bileaflet ones. These are available from makers like On-x , Medtronics or St Jude.

I can only guess at the questions on your mind but to me (had my third ohs back in 2011) I am now quite glad I have a mechanical.

Warfarin is not a demon and management of INR not so tricky. Probably by about 6 months out you will be nice and stable.

Feel free to PM me if you want to chat about anything, I can Skype or call if you want to

 

[Dylanm111]

Hi Pellicie,

Many thanks for the reply and hope you're keeping well!

How are you getting on with the mechanical valve? Did you consider a tissue and the possibility of then a 4th/5th surgery?

I had my first OHS at 8, then my second at 20. My own valve will last another 1-2 max more years. However, I have currently started taking medication (Losartan) because my LV is starting to dilate.

I am very active. I run/cycle and go the gym every day. I also suffer with severe anxiety, so hearing the mechanical valve would drive me over the top even more! In saying that, I am very diligent and meticulous when it comes to my own diet, lifestyle and current medication.

Thank you for the offer, I may take you up on that. I would be intrigued to hear about your journey as it sounds like a similar one to my own!

Best,

Dylan

 

[pellicle]

Hey Dylan

thanks, I am "keeping well" ... spent yesterday doing some bathroom renovations , laying some wall sheets over the studs before I can waterproof and tile.

When it came time for my 3rd op the surgeon (who interestingly was part of the same team who had done my first two ops') laid the facts on the table and said that this operation will not be easy due to the amount of scar tissue. He offered me the choice of valves and said that due to me being healthy and active (hike, cross country ski with my wife, cycle ...) that the chances were that I would not get a long span from a tissue prosthesis. The valve would start to calcify and slow me down and impede my health. Then I would be up for a reop in under 15 years. He made it clear that scar tissue will be even more built up (increases with each operation) and that the operation would then carry even more significant risks. His words were "you will not have surgeons queueing up to do that surgery".

Not knowing anything much about anticoagulation therapy at the time (unlike now) I weighed that carefully and it became obvious quite soon that I would be a fool to do anything else except have a mechanical.

Being an alert and focused professional in I was totally confident that I could manage my INR myself and get the best possible outcome.

I now see that the choice between bio and mech has that fundamental difference. With a mech it will last longer than me, and my health is more or less in my hands. With a bio the process is partly down to chance (do you calcify the valve faster or not) and a totally clear max use by date.

I did not want to put my wife through another surgery nor did I want to take the quite significant risk that I would be injured in the later 4th surgery and be debilitated and a handicap to my wife.

I have written much here on these points and on the potential traps which can befall you on reoperation. I was lucky with my first two, my third gave me a legacy which may increase the risk of a 4th surgery to being nearly certainly deadly.

People make the mistake of treating surgery as a long day of hard work with some pain to workthrough the following day. Its much more than that and the risks are often poorly understood by most.

I write on my blog about these things, hopefully you will find something useful in these posts:

http://cjeastwd.blogspot.com/search/...Replacement%22

http://cjeastwd.blogspot.com/2014/09...ng-my-inr.html

as I say in one of my blog posts:

My wife was distraught at the thought of my surgery (more so than me), she was beside me every step of the way. She said to me in recovery 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 was so pleased because she was so relieved. I would not want to put her through that again. If you are a reasonably healthy adult, and you choose a tissue valve you will for sure be putting your loved ones through it again.

Is that something you want to do to them?

Best Wishes

 

[Dylanm111]

Hi Pellicle,

Thanks for the reply. Great to hear you have progressed so well since your operation.

Your story is an interesting one I must say and one I can relate to. I was not aware of the scar tissue problem or that the tissue valves calcify. I would be like yourself, very active and relatively young - 28. So, it seems the mechanical valve is the way to go.

Did you get the full opening of the chest? Or was minimally invasive surgery an option for yourself to replace the valve? I am doing some research and would love to go down the route of minimally invasive surgery.

Are you restricted in any way? exercise, travel, general day-to-day life activities? How many tablets a day are you taking for your heart?

I must take a read of your blog when I get home this evening or tomorrow morning.

Sorry for all the q's!

Best,

p.s credit to you and your wife for being so brave.

 

[pellicle]

Hi

A couple of quick responses before I head off to work

No restrictions, I travel a lot (something you'll glean from my blog)

I had my third operation at 48, in 2011, so in some ways I'm ahead of you on the same road.

My email is my username here at hotmail

 

[Dylanm111]

[email protected] or co.uk?

 

[dick0236]

Welcome Dylanm111. I knew pellicle would offer good advice since his experiences are similar to yours. I'm jumping in because I had my one and only surgery at about your age and wanted to share my experience over the years.
1. my mechanical valve has lasted 48+ years and is expected to last my lifetime.....I'm now almost 80.
2. the valve has had very little impact on my life and I have always been pretty active......and still am for my age.
3. the drug warfarin is not difficult to manage although it can bite you if you treat it casually.......but it is certainly worth the effort since it has helped keep me out of surgery for a long time.
4. my aortic valve is no longer in production altho it was manufactured until 2007.

I hope you have successful surgery when the time comes.

 

[Dylanm111]

Welcome Dylanm111. I knew pellicle would offer good advice since his experiences are similar to yours. I'm jumping in because I had my one and only surgery at about your age and wanted to share my experience over the years.
1. my mechanical valve has lasted 48+ years and is expected to last my lifetime.....I'm now almost 80.
2. the valve has had very little impact on my life and I have always been pretty active......and still am for my age.
3. the drug warfarin is not difficult to manage although it can bite you if you treat it casually.......but it is certainly worth the effort since it has helped keep me out of surgery for a long time.
4. my aortic valve is no longer in production altho it was manufactured until 2007.

I hope you have successful surgery when the time comes.

Hi,

Many thanks for sharing your thoughts and experience. I am so happy to hear from someone who has reached such a great age with having this type of surgery done!

At 28, I am concerned that my life will be a short one, especially after having a two previous OHS.

Can you expand on how warfarin "can bite you if you treat it casually"?

Best,

Credit to you for keeping up the active lifestyle!

 

[dick0236]

Can you expand on how warfarin "can bite you if you treat it casually"?

My ONLY bad experience came when I was 38 (in 1974, about seven years post surgery)........ when not a lot of good info was available on warfarin management. I went on a week long vacation and forgot to take my warfarin with me. I thought it wouldn't hurt me to go without the drug for the week.......wrong. Upon my return to work after the vacation I suffered my one and only stroke which has had some impact on my life altho I have readjusted to the loss of some vision which was the only lasting problem from the stroke. With todays information and testing protocol those types of problems should be minimized......but the warfarin patient has to "take the warfarin as prescribed and test routinely".

 

[pellicle]

Hi

At 28, I am concerned that my life will be a short one, especially after having a two previous OHS.

actually Open Heart Surgery has about the best outcome of almost any medical intervention. While it seems like a drastic surgery its got a fantastic track record.

There is no reason why you shouldn't live till your later years. If your only problem is your valve (like say, you're not diabetic or any other type of serious illness) then you'll be set for a long normal life after surgery.

Many here are very active, we have long distance runners, power lifters, footballers ...

Best Wishes

 

[Dylanm111]

I was not aware of its track record!

Apart from the dilated Left Ventricle (anyone else have this prior to surgery?!), which is caused by the damaged aortic valve and my crippling anxiety, I do not have any other illnesses. In fact, I would consider myself in better shape than most guys my age. My bicycle is my main method of transport, so I cycle everywhere. I go the gym daily, without fail. I don't drink and have a really 'clean' diet.

The anxiety is a big one for me though and knowing I need another surgery has made the anxiety a lot worse. With anxiety comes depression, and I've been isolated in myself the last few months over my future. So, it's reassuring to hear from people like you guys, Pellicle and Dick0236, that has been through this and are living a 'normal' life.

I am curious, did any of you guys have any physical symptoms pre-surgery and then notice a significant improvement in health post-surgery?

Best,

 

[almost_hectic]

I was not aware of its track record!

Apart from the dilated Left Ventricle (anyone else have this prior to surgery?!), which is caused by the damaged aortic valve and my crippling anxiety, I do not have any other illnesses. In fact, I would consider myself in better shape than most guys my age. My bicycle is my main method of transport, so I cycle everywhere. I go the gym daily, without fail. I don't drink and have a really 'clean' diet.

The anxiety is a big one for me though and knowing I need another surgery has made the anxiety a lot worse. With anxiety comes depression, and I've been isolated in myself the last few months over my future. So, it's reassuring to hear from people like you guys, Pellicle and Dick0236, that has been through this and are living a 'normal' life.

Best,

I rarely would suggest meds that aren't already prescribed. But I think it's completely understandable to have anxiety in your position. Talk to your cardiologist and see if there's anything they might prescribe to help you calm down a bit. When I was in the hospital, my surgeon was concerned, I must have been visibly anxious. He recommended that maybe a little Xanax might help me relax. Although I honestly don't remember if I ever got it or not. My only point being they may think it a good idea to help you through the ordeal.

 

[cldlhd]

Is there something you can take for the anxiety? I'm sure you've looked into that but I would imagine multiple ohs would add greatly to the anxiety. Hats off to you people who've had surgery like this at such a young age. I can't imagine what that's like for you or especially your parents.
At your age and already having 2 surgeries I would think mechanical would be the way to go.
Pellicle a company named schluter makes a product called Kerdi board that goes up similar to sheet rock but is waterproof from the get go. You only have to tape the seams and over the screws with their tape. It's time ready.

 

[Dylanm111]

Is there something you can take for the anxiety? I'm sure you've looked into that but I would imagine multiple ohs would add greatly to the anxiety. Hats off to you people who've had surgery like this at such a young age. I can't imagine what that's like for you or especially your parents.
At your age and already having 2 surgeries I would think mechanical would be the way to go.
Pellicle a company named schluter makes a product called Kerdi board that goes up similar to sheet rock but is waterproof from the get go. You only have to tape the seams and over the screws with their tape. It's time ready.

Hi,

Thank you for the kind words.

I asked my GP/Cardiologist about medication for anxiety and they were very reluctant to prescribe me with anything due to the nature of my heart condition. They were more keen with me exploring areas such as CBT, yoga, mindfulness etc..

Yes, mechanical seems the obvious choice. I don't know much about the AR therapy though and how I regulate it!

Best,

 

[Dylanm111]

Is there something you can take for the anxiety? I'm sure you've looked into that but I would imagine multiple ohs would add greatly to the anxiety. Hats off to you people who've had surgery like this at such a young age. I can't imagine what that's like for you or especially your parents.
At your age and already having 2 surgeries I would think mechanical would be the way to go.
Pellicle a company named schluter makes a product called Kerdi board that goes up similar to sheet rock but is waterproof from the get go. You only have to tape the seams and over the screws with their tape. It's time ready.

Hi,

Thank you for the kind words.

I asked my GP/Cardiologist about medication for anxiety and they were very reluctant to prescribe me with anything due to the nature of my heart condition. They were more keen with me exploring areas such as CBT, yoga, mindfulness etc..

Yes, mechanical seems the obvious choice. I don't know much about the AR therapy though and how I regulate it!

Best,

 

[cldlhd]

No problem, I can't help you much with anti coagulation therapy as my valve was repaired not replaced. There are others out here who are very experienced with it that I'm sure will help you.

 

[pellicle]

Hi Dylan

I asked my GP/Cardiologist about medication for anxiety and they were very reluctant to prescribe me with anything due to the nature of my heart condition. They were more keen with me exploring areas such as CBT, yoga, mindfulness etc..

sorry to hear you are suffering from mental stresses. Personally I avoid any anti-depressant medications because I've seen first hand that they often do more harm than good without dilligent changes to select the medication which *works* for you.

I am deeply of the view that one can master ones self.

To me key to this is good friends and conversations. I believe psyhchologists are for people without friends or without wise friends. I did a few psych subjects at Uni and found that almost all were deeply disturbed people looking to work themselves out. They also seemed to like being "better" than others. I noted that I was not the only one who felt that way.

In life after Uni I have met a number of psychologists and even talked with a few after my wife died. My opinion is withering. To be honest the best "pshchologist" I saw was a spiritual medium. Not because I believed she was in touch with Anita at all (was worth a shot though) but because she was caring, understanding, listened and (most of all) did not see me as a source of income. Pharma companies provide many good and beneficial products, but they also relentlessly push rubbish which has been shown to be harmful to make up their bottom line.

Despite the temptation, do not seek to isolate yourself. There is really nothing wrong with you and you are a good person. Sure you have a minor technical problem with a small part of a valve in your hydraulic system, but don't throw the baby out with the bath water.

Have you heard of Maslow? Have a read on those principles here https://en.wikipedia.org/wiki/Maslow's_hierarchy_of_needs

Its true that some of your levels are missing a few pieces (as are mine) but gradual work can be done (by you with the help of others) to fix those foundations.

Don't worry about what other people think (yes, I know well that's easier said than done) and just look to your own opinions of your self. You do not need career to make you feel better. In the past my career has been demolished twice by market forces (I used to be an electronics technician) and government changes (I was trying to develop a career in water policy and sustainable development planning). If I linked my self worth to my career I would be in deep ****.

So, keep an eye on the horizon (watch Castaway for its ray of hope) and keep on an even keel. Hope to chat soon mate ...