Any advice welcome

[Ricaldo]

Hi all,

I am a 34yo man I am due to see my cardiologist in October as my aortic stenosis has moved towards severe they believe. I am wondering what symptoms you all have had that aren't the normal shortness of breath, chest pain etc like are there any other symptoms you noticed?

Also any advice on dealing with waiting to see what the future holds would be helpful I am very anxious and depressed about it all and am on medication for that too.

Thanks for reading.

 

[pellicle]

Hi Ricaldo

I admit I have strange ways of looking at the world, by strange I mean that most others consider them strange. Myself I consider them correct and beneficial (so its all perspective right).

Since I was a child I've had the view that I am the captain of the Good Ship Pellicle. Not some drug, not booze, not other people and not my own inner fears and concerns. I try to shine a light on them and understand them and take charge and manage them.

In my 20's I read a lot (you'll see why if you look at my surgical career in my bio here), that reading was almost always about bettering myself and was either science or science fiction in the main. I liked the authors who focused on sociological views. Frank Herbert was one of my favourites but only the book Dune. From that you can find a good quote with respect to fear and anxiety.

read it, stop and reflect on each sentence ... think about each sentence, move on to the next.

Fear is a transient and irrational thing, the only thing permanent is your conscious mind. If you choose to forfeit control the others will rule you.

Next is stoic philosophy, here are some good ones. Again, spend time on each. Have you ever practiced meditation? If not you should.

Now reflect on this simple truth

Because I doubt you've ever really suffered (think Russian Goulag or a true feat of survival in the wild or being treated in a military hospital in any pre20thC war), almost nobody in the modern world has suffered.

I've never felt more anxious about anything than "did I do enough study for this exam" or "will she say yes". Anxiety comes from fear and fear usually comes from ignorance. Either way it is you who are in control so you should assert that. Anxiety is a mental state which provides nothing and destroys people who allow it to.

Just make the choice to turn you back on it.

Before my surgeries (I'll assume you read my bio) I usually did the normal things I did. I put a note in my diary (or since 1991 my electronic organiser) to remind me of my appointment with whoever (cardio, surgeon, Echo study, CT scan ...) and just went about my business. Because this is well known to me:

Lastly reflect on this one:

(as you have with all of the above)
Your task is not to worry about the hand of cards you have but to concern yourself with what you will do with them, and how you will play them. You are part of a team now and they will do their parts just as you should do yours.

Some other good suggestions here:
https://academyofideas.com/2019/02/carl-jung-overcoming-anxiety-disorders/

“The perpetual hesitation of the neurotic to launch out into life is readily explained by his desire to stand aside so as not to get involved in the dangerous struggle for existence. But anyone who refuses to experience life must stifle his desire to live – in other words, he must commit partial suicide.”​

Carl Jung, Symbols of Transformation

Best Wishes

 

[Zoltania]

Hi Ricaldo,

Anxiety is very natural in this situation and can be hard to deal with. I'm glad you are getting help with medication. Have you looked into talk therapy such as Cognitive Behavioral Therapy as well?

Mindfulness meditation can also be useful, giving you a different perspective on your thoughts and feelings. (Remember, "don't believe everything you think.")

If you don't have access to in-person help, there are books and apps that can be useful. I like "Feeling Good" by David Burns (though that deals more generally with depression), and I've used the Headspace app for meditation (available free through my library), though I know there are many others.

Being in the waiting room is absolutely no fun. The good news is that you can use this time to read the forum archives and learn about people's experiences. Heart surgery is challenging, but the vast majority of people come through it successfully and put it behind them (you'll see the phrase "in the rear-view mirror" used here). I was scared out of my mind before my surgery, but the good people here helped me get through it, and it was nothing like the awfulness I had feared.

Good luck to you -- keep coming back and asking questions.

 

[dornole]

I find it helpful to say “cross that bridge when I come to it” or “might not even be an issue why darken my whole month, wait and see.” I like to listen to audiobooks and clean mindlessly, this stops my thoughts plus then I feel more peaceful in a clean environment. I have about a million depression tricks actually. It can be hard to get traction if you feel down but … just do ANYTHING that helps a bit and things can start to shift.

I’ve been going thru “maybe it’s time” for 20 yrs now, even bought a lift chair at one point!! These days, I’m not believing it till they start shaving me on the table . Relax, give your worried self a hug and take it as it comes (and no earlier). Odds are, worst that happens is you get a life saving surgery and many more years to learn and grow as a human being. Could be worse.

 

[ValveAdmin]

Welcome, Ricaldo. Joining here is a good start.

 

[erricojj]

Welcome aboard, Ricaldo.

You will be given a new lease on life. Perhaps you have special people in your life already who care about you. As much as you may feel this is about you, it's also about them and they are worrying about you. Devoting part of yourself to them and staying strong for them will help them. You can imagine your life continuing with them once you "get on the other side". That should surely comfort you.

 

[TomM]

A physical symptom I noticed was that my gums would get a throbbing pain in them if I exercised too much.

For my mental health for the surgeries I had I found that my faith and prayer gave me strength. This might not be for you I appreciate but it is for me

 

[nitrous]

Hi all,

I am a 34yo man I am due to see my cardiologist in October as my aortic stenosis has moved towards severe they believe. I am wondering what symptoms you all have had that aren't the normal shortness of breath, chest pain etc like are there any other symptoms you noticed?

Also any advice on dealing with waiting to see what the future holds would be helpful I am very anxious and depressed about it all and am on medication for that too.

Thanks for reading.

Ok, i'm going to go for a bit more pragmatic approach. My wife recently (last few years) underwent triple bypass (with LIMA), AVR and ascending arch replacement due to root dilitation. (coronaries did not need reimplantation). She had suffered a minor infarct in the LAD distribution (so called 'widow maker' vessel) but thankfully, due to blissful ignorance, a lack of risk factors and both of us being physicians.... she was well collateralized due to repeated bouts of "heart burn" that she treated with Gaviscon/PPI's etc.

I give you this detail to let you know that we all are pretty poor at self diagnosis and treatment. Regardless of training. But we are better than average at getting the right team on our side to optimize outcomes.

All the above surgical procedures are extremely well worked out. You want a surgeon with good hands, short pump times and favorable outcomes.

While my wife is a family doctor, I'm an anesthesiologist. I've done cardiac cases in the past. The team that does them are good. Where I trained, only a dedicated few anesthesiologists are on the cardiac anesthesia team. I was extremely confident in the outcome. Not out of arrogance or delusion but because of my training.

Make sure you've got all your ducks in a row, follow medical advice and show up on time! I have every confidence you will do GREAT!

 

[caro]

Hi Ricaldo,

The waiting room is the hardest part. My biggest regret is that I didn't talk to a therapist. I couldn't escape my anxiety and gave myself some really bad heartburn and completely lost my appetite. Be kind to yourself and talk to a therapist. If you have a good friend or loved one who you believe won't exacerbate your anxiety, talk to them and lean on them some. I made the mistake of not asking for help. It's great that you're on this forum. People mentioned meditation. It really helps. I use Insight Timer. Surround yourself with supportive people.

I was 30 when I had my surgery. 32 now. I injured my arm last year and had nerve damage. Honestly, that was so much worse than the heart surgery. I spent a lot of time worrying about heart surgery and then couldn't use my arm for almost a year because of nerve damage that had nothing to do with heart surgery. That's life. Now, I'm getting stronger and using a personal trainer. I'm much stronger now than I've ever been. Recently, I was an actor in a play that just wrapped up, and I have several trips lined up. You can still do anything AND be happy after heart surgery. Promise. Wishing you all of the best.

Caroline

 

[tom in MO]

Hi all,

I am a 34yo man I am due to see my cardiologist in October as my aortic stenosis has moved towards severe they believe. I am wondering what symptoms you all have had that aren't the normal shortness of breath, chest pain etc like are there any other symptoms you noticed?

Also any advice on dealing with waiting to see what the future holds would be helpful I am very anxious and depressed about it all and am on medication for that too.

Thanks for reading.

If you have symptoms and "moved towards severe" I'd ask for an earlier appointment than 2-months from now. The UK health system has been slow for some forum members and they needed to push back.

I had a bicupsid valve with stenosis and didn't have any symptoms until after my surgery was scheduled when I had a single dizzy spell.

I found that rote prayer, such as the rosary, helpful to get my mind and emotions in a better place. Also movies that are comedies or mysteries helped too.

 

[vitdoc]

Hi all,

I am a 34yo man I am due to see my cardiologist in October as my aortic stenosis has moved towards severe they believe. I am wondering what symptoms you all have had that aren't the normal shortness of breath, chest pain etc like are there any other symptoms you noticed?

Also any advice on dealing with waiting to see what the future holds would be helpful I am very anxious and depressed about it all and am on medication for that too.

Thanks for reading.

I don’t have any magic thoughts on alleviating stress. But thinking specifically about what fears you have and understanding how these fears may play out may be helpful.

First fear of dying. Possible but rather unlikely in a otherwise healthy person having surgery in a solid medical environment.

Second fear of other issues like stroke. Same as number one relatively rare.

Third fear of anti coagulation assuming a mechanical valve is used due to your age. Not nearly as bad as you might imagine backed up by numerous people on this blog especially with self testing.

Fourth fear of being unable to do things athletically that you may engage in currently. Again there are few things that many of us on anticoagulants have had to avoid.

Finally l have always looked at valve problems in a positive way since they are highly fixable and episodic. Not cancer not some chronic condition like diabetes or lupus or Crohn’s disease which can be lifelong issues with chronic care required.
Surely nobody seeks having valve disease but one can live a pretty normal life without hardly any limitations.

So after saying all this one can still have anxiety but hopefully putting the problem in a different perspective may help.

As far as symptoms go they can be minor even with a high grade stenosis. The heart walls will thicken and compensate for a while . But if you wait excessively the heart may suffer non reversible damage. Also one can have sudden death due to ventricular arrhythmia. When I was 29 and awaiting surgery for a tight bicuspid valve I fainted during a basketball game. My cardiologist freaked out and moved the surgery up.
So talk with the cardiologist about where you are. The problem will not self correct so don’t wait forever due to fear.

 

[dick0236]

Also any advice on dealing with waiting to see what the future holds would be helpful I am very anxious and depressed about it all and am on medication for that too.

I know the feeling..........even after my valve replacement when I was 31 I assumed that I would be dead by 50 or maybe sooner.........now even my valve is older than 50 and I have lived well into my 80's and wondering why I was so concerned about living too long.

 

[Daniel758]

I don’t know if this will help but the way I approached heart surgery (and life in general) is to do everything I can to prepare for the event/life and then expect things to work out.

Find the best doctors you can, find the best facility you can, get in the best shape you can, get your personal and financial plans for various outcomes in order, set up after care and a rehab plan and then pass through the doors and see what happens.

Worry and stressing changes nothing and is unproductive at this point.

In the event things don’t happen to work out as expected, re-evaluate and repeat the above.

That’s all you can do.

You only have control over what you can do so concentrate on that and life will take you where life takes you.

And stop making or worrying about 5 and 10 year plans. You have no idea what’s coming.

How many people (including yourself) do you know who’s 5 and 10 year plans were anywhere close to accurate?