Scared and full of anxiety

[vegasJerz]

Hello all,

Never even crossed my mind that I may have a heart valve issue.

I’m 42 (male) have lived a life of health and exercise. Worked mainly office jobs. Been in shape for 20+ years and started testosterone therapy 8 years ago.

My only vice was THC usage. Which began my panic attacks. I quit last November. But have had shortness of breath occasionally. Thought it was from smoking THC.
Fast forward to April of this year, my father very quickly became ill, landed in ICU and passed (not heart related) That experience increased my panic attacks drastically. Landed up in the ER 4 times, Thinking I was experiencing a heart attack. Each time I was told it’s Panic and to see a therapist
However one PA suggested I see a cardiologist just to rule things out…

Got a therapist and took the cardiologist referral. He scheduled an Echo, stress test, 24 hour monitor and the neck artery.

Well yesterday I had the echocardiogram and THE TECH told me I have a leaky heart valve. He tried to show me but I couldn’t look nor understand what I was seeing
(I don’t do well in medical situations)

Obviously, the tech should’ve told me anything but I don’t have any more information as to what valve severity or any other information. I asked him about it and he said yeah it’s treatable and you’re young and healthy you’ll be fine. He acted as if it’s not a big deal.

Of course, from there, I get on the Internet and start reading. Which is never a good idea, but I did find this forum, which I hope can provide me a path and knowledge on what to ask/learn

Now I do have symptoms of shortness of breath, especially in some upright lying positions. And when I exercise too intensely, I experience more shortness of breath
The other thing is, I have occasional heart palpitations, I also get very dizzy upon standing from an upright seated/laying position. Considering I am dealing with anxiety and panic attacks. A lot of these symptoms crossover as you can imagine.

I know the next step is to complete the other tests and meet with the cardiologist to find out all the details. The other tests are scheduled for next week and my follow up with the cardiologist at the end of November.

Thank you for reading all this I do appreciate it, greatly. I find learning about situations, especially from those who’ve been through it, can calm my anxiety.

For my question, what do I need to ask?
I realize I need to be prepared, and I don’t know how to prepare at this moment.

 

[dick0236]

I know the next step is to complete the other tests and meet with the cardiologist to find out all the details. The other tests are scheduled for next week and my follow up with the cardiologist at the end of November.

Thank you for reading all this I do appreciate it, greatly. I find learning about situations, especially from those who’ve been through it, can calm my anxiety.

For my question, what do I need to ask?
I realize I need to be prepared, and I don’t know how to prepare at this moment.

Welcome to the forum. It sounds as tho you are doing what you need to do.

My advice is to take a deep breath.......Believe it or not, heart surgery has become a fairly common surgery with a very long track record of successful outcomes.

I wouldn't worry too much about a long list of questions......and don't get "too deep in the weeds" with deep questions at this point. Take notes and listen.......hopefully, your Cardio will answer most of your questions before you ask........but don't be afraid to interrupt the Cardio if an issue is important to you.

Stay tuned in to this Forum. IMO it has the best info for valve patients........preop or postop.

 

[PAN]

Hi,

If only I knew then what I know now..

Much like you I was quite stressed when I first heard I had a regurgitant valve. My cardiologist did a terrible job of explaining the likely time frame involved. Maybe I wasn't listening.

Fast forward 11 or 12 years and we eventually had the surgery. Went well, back to normal now.

Definitely take a deep breath, read what you can to help understand, finish your work up and then assess what the situation is. I worried so much initially, I really shouldn't have. Easier said than done but you'll get there. Study your condition so you're fully informed. Did I mention I had a decade or so to study.

All the best,

P

 

[carolinemc]

Hello all,

Never even crossed my mind that I may have a heart valve issue.

I’m 42 (male) have lived a life of health and exercise. Worked mainly office jobs. Been in shape for 20+ years and started testosterone therapy 8 years ago.

My only vice was THC usage. Which began my panic attacks. I quit last November. But have had shortness of breath occasionally. Thought it was from smoking THC.
Fast forward to April of this year, my father very quickly became ill, landed in ICU and passed (not heart related) That experience increased my panic attacks drastically. Landed up in the ER 4 times, Thinking I was experiencing a heart attack. Each time I was told it’s Panic and to see a therapist
However one PA suggested I see a cardiologist just to rule things out…

Got a therapist and took the cardiologist referral. He scheduled an Echo, stress test, 24 hour monitor and the neck artery.

Well yesterday I had the echocardiogram and THE TECH told me I have a leaky heart valve. He tried to show me but I couldn’t look nor understand what I was seeing
(I don’t do well in medical situations)

Obviously, the tech should’ve told me anything but I don’t have any more information as to what valve severity or any other information. I asked him about it and he said yeah it’s treatable and you’re young and healthy you’ll be fine. He acted as if it’s not a big deal.

Of course, from there, I get on the Internet and start reading. Which is never a good idea, but I did find this forum, which I hope can provide me a path and knowledge on what to ask/learn

Now I do have symptoms of shortness of breath, especially in some upright lying positions. And when I exercise too intensely, I experience more shortness of breath
The other thing is, I have occasional heart palpitations, I also get very dizzy upon standing from an upright seated/laying position. Considering I am dealing with anxiety and panic attacks. A lot of these symptoms crossover as you can imagine.

I know the next step is to complete the other tests and meet with the cardiologist to find out all the details. The other tests are scheduled for next week and my follow up with the cardiologist at the end of November.

Thank you for reading all this I do appreciate it, greatly. I find learning about situations, especially from those who’ve been through it, can calm my anxiety.

For my question, what do I need to ask?
I realize I need to be prepared, and I don’t know how to prepare at this moment.

And just try to relax and put your mind at ease, for millions of people all over the world have bypasses every day and survive. I have been a cardio person since birth, had several cardiac caths, 1 bypass repair and 1 bypass aortic valve replaced with St. Jude's aortic leaflet valve, on warfarin and still kicking. You will do fine. Worrying will only make you crazy. And welcome to the club.

 

[V__]

Obviously, the tech should’ve told me anything

I don't think so. For all echos I ever had, it just wasn't the tech's job to interpret the echo scan results. They could be excited by the findings, and they know a fair amount. But it's really the cardiologist's job to assess the results, the degree of the leak, and so on.

As an anecdote, after the last pre-surgery monitoring echo test the technician just cryptically said that "she took many pictures". And it lasted about twice longer than typical. So I knew something was up, but that was it.

The presence of the valve leak today does not actually mean that you will have a surgery tomorrow. If the leak is minor, the surgery is not useful. Only if it gets relatively relatively bad (at or near "severe" stage) the surgery is indicated. Many people never get to that stage.

So you really need to talk to the cardiologist to find out what's going on.

For my question, what do I need to ask?
I realize I need to be prepared, and I don’t know how to prepare at this moment.

Different valves and their conditions are rather different. It's hard to prepare for "everything". I'd ask some basic questions, if I were you:
- Which valve is affected?
- Degree of the leak (regurgitation?). For example, "mild", "moderate", "medium-severe", "severe".
- If there is any stenosis, prolapse, or both.
- Any program for the followup (next steps). If the leak is not big, they will probably want to monitor you with regular echo tests. This is so-called "watchful waiting" strategy.

Glad you are proactively seeking the information. But your cardiologist will see a lot more specific features of your test results than any of us here You really need to see their assessment to go on from there.

Hope it helps.

 

[pellicle]

Hi and Welcome

Thank you for reading all this I do appreciate it, greatly. I find learning about situations, especially from those who’ve been through it, can calm my anxiety.

I'd tell you to only focus on outcomes and long term outcomes, especially at your age. I'd recommend you forget about the bumps in the road and focus on what happens 10 years later. Everyone makes (in my view) the mistake of focusing on the actual event which on a timeline of your life is about this long

.

yep, a dot.

Here you'll meet many people who have had multiple surgeries spaced over years or had "one an done".

Expect to take time and to slowly digest what is a mountain of data and to correct many a wrong impression. Personally I'd start off with learning about research, here is a good start



Best Wishes

 

[dornole]

Welcome to the forum, and sorry to hear about the panic attacks, and what you have had to go through with losing your father. But, if you have gotten through that, and stopped using THC, and mostly kept fit, you have built inner strength to help address this valve thing too.

Do you have online access to your echo results, and the radiologist's interpretation of them? You could look at those now rather than waiting for the end of November, looking for info about which valve and words like (trivial, mild. moderate or severe) (regurgitation or stenosis). Unless you see "severe," you can probably rest easy about an valve issue. It's unlikely to need an immediate response, just annual follow-up. The other tests you are having will also help see if something else is going on with your heart or cardiovascular system, or if it really is primarily anxiety which is no fun either but a different treatment approach obviously.

If you DO have a valve issue, your tech is right that it's highly treatable. Is it freaky? Yeah (I was 34 when I found out I had severe mitral stenosis and had a repair) but hot damn, they can fix it which is completely amazing. My valve repair has been stable for more than 20 years and I'm super grateful to the medical team for fixing me up and sending me back to enjoy living. There's no guarantees in life obviously, but one day at a time right?

Deep breaths, settle yourself, and ask away if we can help.

 

[Jeff Roberts]

I think we all go through this. In February of this year, I found I was experiencing breathlessness when doing even very light exercise. I thought it might be something to do with my diaphragm or lungs. My doctor obviously thought so too because he first sent me for chest X-rays. But, cutting a long story short, after further tests they discovered I had severe aortic stenosis and the only solution was a valve replacement via open heart surgery.

It throws you, completely, doesn't it. One moment you think you're fine and the next you're being told you have to have a major operation, one that most people hope to never experience. I had to know as much as I could. I was given literature, scoured the web and bought books on the subject of heart disease and surgery so that I knew what to expect. For me this helped, but nevertheless some anxiety remained, which is to be expected. I even watched a YouTube video of an aortic valve replacement. I appreciate that would not be everyone's choice, but it definitely helped me see that these operations are well understood and with well-established procedures.

I am in the UK, so things work differently here. I chose to see a cardiologist privately for a consultation. He confirmed I would need surgery and that it needed to happen in no more than 3 months. He also said that surgery like this is best done within the NHS (our free National Health Service) because there are few private hospitals that are geared-up for such surgery. In the city I live in, we have a major NHS hospital with many established heart surgeons, so I didn't have to go far. However, we do have long waiting lists at the moment, so he advised that he would get me into hospital to wait for an operation rather than waiting at home. The difference in waiting time was extreme: probably a year if waiting at home to be called-in against 2-3 weeks if I were already in hospital.

There's a reason I explained the above. I obviously opted for the 2-3 weeks, but apart from the waiting time difference this turned out to be a good choice for another reason. I found myself in hospital with people who were waiting for heart surgery and also people who had surgery and were in the first few days of post surgery recovery. Seeing them and talking to them made me feel much better about what to expect.

I had my surgery 12 weeks ago. I opted for an animal tissue valve as opposed to the mechanical valve, largely because I didn't want to worry about managing a warfarin schedule. I was weighing-up the pros and cons right up to the day before my operation and informed the allotted surgeon of my choice only then.

The first couple of weeks of recovery can be difficult but not as difficult as you might imagine. My biggest problem was pain in my upper back and upper arms. There was some soreness in my sternum, but nothing like what I think most people expect. I also did not sleep well for those weeks, because it wasn't possible to sleep on my sides as is my normal preference. Around week 5, I found things change quite a lot. In my case the pain dropped off a lot.

You do have to expect that you will become weary of the time it takes to recover. I kept reminding myself that this was not a chronic situation and that it would at some point end. That helped me, but I won't pretend there weren't days when I was very fed up.

So, in summary, I would say your medical situation is a lot to take in at first, and you'll need to decide how much you'll want to learn about the coming surgery and recovery. But, you should also keep in mind that many people have been through open heart surgery successfully and the surgical procedures are very established, and very tried and tested.

 

[carolinemc]

I think we all go through this. In February of this year, I found I was experiencing breathlessness when doing even very light exercise. I thought it might be something to do with my diaphragm or lungs. My doctor obviously thought so too because he first sent me for chest X-rays. But, cutting a long story short, after further tests they discovered I had severe aortic stenosis and the only solution was a valve replacement via open heart surgery.

It throws you, completely, doesn't it. One moment you think you're fine and the next you're being told you have to have a major operation, one that most people hope to never experience. I had to know as much as I could. I was given literature, scoured the web and bought books on the subject of heart disease and surgery so that I knew what to expect. For me this helped, but nevertheless some anxiety remained, which is to be expected. I even watched a YouTube video of an aortic valve replacement. I appreciate that would not be everyone's choice, but it definitely helped me see that these operations are well understood and with well-established procedures.

I am in the UK, so things work differently here. I chose to see a cardiologist privately for a consultation. He confirmed I would need surgery and that it needed to happen in no more than 3 months. He also said that surgery like this is best done within the NHS (our free National Health Service) because there are few private hospitals that are geared-up for such surgery. In the city I live in, we have a major NHS hospital with many established heart surgeons, so I didn't have to go far. However, we do have long waiting lists at the moment, so he advised that he would get me into hospital to wait for an operation rather than waiting at home. The difference in waiting time was extreme: probably a year if waiting at home to be called-in against 2-3 weeks if I were already in hospital.

There's a reason I explained the above. I obviously opted for the 2-3 weeks, but apart from the waiting time difference this turned out to be a good choice for another reason. I found myself in hospital with people who were waiting for heart surgery and also people who had surgery and were in the first few days of post surgery recovery. Seeing them and talking to them made me feel much better about what to expect.

I had my surgery 12 weeks ago. I opted for an animal tissue valve as opposed to the mechanical valve, largely because I didn't want to worry about managing a warfarin schedule. I was weighing-up the pros and cons right up to the day before my operation and informed the allotted surgeon of my choice only then.

The first couple of weeks of recovery can be difficult but not as difficult as you might imagine. My biggest problem was pain in my upper back and upper arms. There was some soreness in my sternum, but nothing like what I think most people expect. I also did not sleep well for those weeks, because it wasn't possible to sleep on my sides as is my normal preference. Around week 5, I found things change quite a lot. In my case the pain dropped off a lot.

You do have to expect that you will become weary of the time it takes to recover. I kept reminding myself that this was not a chronic situation and that it would at some point end. That helped me, but I won't pretend there weren't days when I was very fed up.

So, in summary, I would say your medical situation is a lot to take in at first, and you'll need to decide how much you'll want to learn about the coming surgery and recovery. But, you should also keep in mind that many people have been through open heart surgery successfully and the surgical procedures are very established, and very tried and tested.

And millions worldwide have had the surgery and survived. We have a better survival rate these days.

 

[vegasJerz]

Thanks everyone for the replies,

Turns out I have two very mild leaks, Mitral Valve and Tricuspid. He said everything else looked great.

Doctor told me not to change anything about my lifestyle and that will monitor.

Well, that provides some relief. It also gives me anxiety to know that there is an underlying issue there. And I’m still dealing with the anxiety episodes. Hopefully I can get past those very soon!