Panic Attacks

[Ged1975]

Hi all,

I finally got the courage to sign up to ValveReplacement.com. I've been aware of this website since I found out 6 weeks ago that I need a aortic valve replacement but I was too afraid to talk about it.

Anyway I'll give you all a brief summary of my situation. (Apologies in advance if I waffle on too long)

I'm a 33 year old male. About 6 years ago my GP heard a heart murmur during a routine checkup. She told me to get this checked out at the hospital. An echo showed I have a bicuspid valve, this was all news to me. I was told that there was mild to moderate leaking and that a yearly echo would be sufficient. I wasn't too concerned about the leaking, I was told that maybe I would need a valve replacement later on in life or maybe never at all. So I just continued on with life, going to the gym 4 to 5 times a week, doing loads of exercise, weights and cardio.

Anyway my last echo was in September 2008, the clinician carrying out the echo said there wasn't any change which was good news. However a few weeks later an appointment card arrived in the post for me to see a surgeon. I have suspected what this was for but I was still quite calm as I was feeling fit and had no symptoms.

I met with the surgeon 6 weeks ago and he told me that I my heart was getting slightly bigger due to the leaking. He said surgery for a mechanical valve replacement was recommended. He then began to go into detail about the operation, warfarin, mortality rate etc. As he was telling me this I had a panic attack. I needed to lie down as I was feeling faint. It was a very bad panic attack, the fear was unbelievable. He said in all his time he's never seen anybody react like this and that before he could operate I would need physiological help.

That was 6 weeks ago, since then I've completely stopped exercising, I'm highly anxious and emotional and the joy has gone out of life.

A date hasn't been set for surgery yet, they told me maybe January or February. I went in to hospital last week for pre-surgery admission stuff like blood tests, ECG, x-rays etc. The was a good and informative day. The next day I was booked in for a CT Scan were they have to inject iodine. I was a little apprehensive about this. Just as they were about to do the scan I had another panic attack. It was my worse one ever, severe tingling all over my body, feeling of doom, loss of control, feeling you are gonna die, the fear is incredible. They had to cancel the scan.

The panic I experience is overwhelming and feels unstoppable, it begins with a pain in my back muscles, it's like a rush of adrenalin that never stops.

I'll be going for more blood tests next week as my blood sugar was quite low.

I went to see a physiatrist yesterday and he recommended I take diazepam before any procedures.

Life is not good at the moment, it's the toughest few weeks I've ever experienced. Physically I'm fine, my condition is asymptomatic which makes it even more difficult for me to accept this valve replacement.

By nature I'm a pessimist, when the surgeon tells me that mortality rate is 1.5% I automatically assume the worse outcome.

I know I need this valve replacement but the way I feel at the moment is that they will need to put me in a straight jacket just to get me to the hospital.

In the meantime I need to get my teeth sorted out, root canal treatment and a clean, that itself is another hurdle for me.

I fully trust the surgeons, they are experts but my anxiety is just so great. The thought that I'll have my chest open and my heart worked on is too overwhelming for me.

Life is strange, 6 weeks ago I was on an exercise bike getting my heart rate up to 185, now I feel like a delicate flower.

Sorry if wrote too much! I just needed to get this all off my chest.

Take care

Gerard

 

[Ross]

Hi Gerard and welcome, your home now, so kick your feet up and relax.

All of us had that same fear, we just didn't all panic about it. The information he's giving you is correct and yes, you will survive and be fit as a fiddle once again. It just blows your mind to think that their something going to be done to your heart. It's natural for all humans to react because we cannot control the situation.

Read around some. You'll see plenty of folks coming out of and going into surgery. They all share their stories soon after.

Once you digest that much, you need to decide on a valve. It sounds like the surgeon is going mechanical, which makes perfect sense for your age, but you do have options.

Welcome again and others will address this too, Im sure.

 

[woodworker5280]

Gerard, thanks so much for sharing your feelings with us. Reading your post brought to mind a lot of similarities between us. I found out about my congenital BAV when I was 17, the summer after my senior year of high school. At the time I was rock climbing every weekend and climbing at the gym twice a week, as well as doing lots of backpacking/hiking/camping. I remember being devastated when told I needed to limit isometric exercise like climbing (which was my life at that point). I immediately quit being active, was emotionally distraught, and socially useless. Anxiety was an every day part of life, and I felt, as you described, like a delicate, fragile person. I let the emotional distress get the best of me and began drinking heavily during my first year of college. This drinking led to my first of five episodes of atrial fibrillation, not fun.

I was told in 2005 by my cardiologist that everything was looking good and that my aorta had not grown in two years. I moved across the country and stopped seeing anyone about my condition (mainly due to not having insurance). I led a very destructive lifestyle, drinking heavily and not exercising one shred. I dealt with tons of anxiety and depression, including suicidal thoughts. Back in October I finally saw a cardiologist and was told I had suffered an aortic anyeurism and it was at 5.6cm and that I needed surgery soon. It's weird, but I immediately felt calm, like "finally, they're gonna fix me."

I'm now almost a month (tomorrow!) post-op, and I'm so glad I had the surgery. When you can allow yourself to give in to the cards you were dealt, and know that the surgeons/doctors/nurses are going to do everything in their power to make your heart strong again, it's pretty special. Sure, it's OHS, not something to take lightly, but it's the best thing for your health now. It sounds like you're a very active guy, and I'll bet once you're a couple months post-op, you'll be right back to getting in shape and feeling good. I know panic attacks are seriously debilitating, and you should of course listen to your doctors about what to do regarding them. I just wanted to let you know I've been where you're at, and I know it's a scary place. But speaking from the "other side of the mountain", I can tell you you'll do awesome, and will back to kicking ass in the gym sooner than you think!

Take good care, brother, and feel free to PM me if you need to chat.

peace
aaron

 

[Karlynn]

Your fears are normal. Your decision to see a psychiatrist about your panic attacks was a smart move. Many of our members have found that they need "a little something" to help them through the anxiety they experienced pre-surgery.

Ask your surgeon about how much your can work out. And make sure they do a scan to check the size of your aorta. It's not uncommon for a BAV to have some aneurysm in the aorta and might need to be repaired at the time of the replacement. If you can work out to some extent - I would recommend doing it. This will probably help with your anxiety.

If you haven't, check out our Active Lifestyles forum and you'll see that many many resume a very active life after their replacement.

Keep on "talking it out" here and I know you'll begin to feel more secure in what is going to transpire in the next few months.

 

[escargome]

Hi,
First let me say "Welcome", now I can sure see your point of view. OHS is a pretty big pill to swallow. I apparently had BAV my entire life, but cardiologists kept telling me that "no problem" you have mitral valve proplapse and your heart seems fine. So along I go, join the US Army at 22, go thru basic training..the whole enchilada. Get assigned to W. Berlin, W. Germany, meet husband, get pregnant, give birth to son. (no meds ala natural), move to Florida, give birth to daughter (again ala natural). Living life happy as a clam, even driving a stock car at our local asphalt race track, kept being told mitral valve prolapse, no worries. So Jan. 2008 rolls along, get bacterial meningites, hosptialized. Now the fun began, told I had heart murmur, I say yes, mitral valve, hospital cardiologist say "sorry, wrong, you have BAV, and you need surgery" Needless to I was a little confused. Many tests, find a different cardiologist for a second opinion, see a surgeon, get bovine pericardial valve on May 19, 2008. Can honestly say, that I never had any symptoms. No SOB, no fainting, no palpitations NOTHING. So, after all this, I do feel better than I did, but I just thought I was getting old... So just take in everything slowly, follow what your doctor says for anxiety, also in case they didn't tell you, take anti-biotic before all your dental procedures and keep coming on here. We will always listen everytime you getting antsy or just want to vent.... Hang in there my friend. I think everyone goes into some kind of denial.

 

[Freddie]

Welcome Gerard,
Do you realize that you are stronger than you think? You've made it over one stumbling block and that is to post on this site....give yourself some credit. It takes a lot of courage to post ones feelings.......and that's what we're here for. Your NOT a delicate flower and I give you credit for being honest with your feelings and sharing them.

Like Ross said, read around the site and educate yourself. Try not to look at the gory details about the procedure of Open Heart Surgery; until you feel your ready.

Take Care and try to relax.........you'll see in the end everything will be fine. One day at a time my friend.

Me

 

[stilldreamin]

Hi Gerard,

I'm still on this side of the mountain with you. I'm told my surgery will most likely be in January, although it seems to be taking longer to get in for some of the tests than anything. I just found out a couple weeks ago I have a bicuspid aortic valve... the murmur was detected in October during an emergency room visit for a completely unrelated reason. My immediate reaction to my diagnosis was a panic attack. Fortunately tho I'm familiar with those, and have taken medication for them for a number of years, although up until now I didn't have them very often. I'm still getting them quite often, especially before my appointments and tests, but as I let myself accept that this is the hand I've been dealt, and although it's not the one I wanted, I'm still going to play it.... I think I'm starting to calm down.
I'm very symptomatic, was taken off work last week. But I'm normally a very active (ok, some say I'm hyper) person. I snowboard, roller blade, rock climb, dance, shovel all this wonderful snow we get here... (bit of sarcasm as I watch it fall outside my window... ) So I'm going crazy, trapped in the body that won't allow me to do the things I want to do and love. But my brain is working, so its planning and scheming now. Next year i'm going to train for my first triathalon (a mini one.. i was supposed to start training with a friend this year, but obviously can't).
I have a faulty part... but it's going to be fixed or replaced and I'll be back to normal, or more than likely even better. I have a new lease of life. My great grandmother died from a heart attack at my age, back then they didn't have the medical advancements to fix us. I feel lucky to know that I'll live to see my daughter grow up, see her graduate, maybe have grand babies for me. I'm glad that my mother, who just buried her husband a year ago, is confident that she won't be having to do the same with her daughter. I still have to take that woman sky diving!
The future scares me, but at least I know I have one.
Yes, I'm still scared and get panic attacks, but thats ok, because I'm going to live to have lots more...

The people on this site have been an inspiration to me... I do a lot of reading here. And they respond and are there to help when you need them. I think I'd be lost without this forum. I'm glad you're here with us too. I hope it helps you as much as it helped me.

 

[Phyllis]

Welcome! I'm glad that you sought the help of a psychiatrist and I hope he can help you cope with your fears. As you can see from the replys you have gotten already, your fears are perfectly normal and if you keep reading here you will see all the success stories. You will be fine and we will be here to help you through this.

 

[Bina]

Gerard, welcome......you will be safe with us!
I remember the day very well when my cardio told me I would need OHS, my knees got weak, I got pale, and almost fainted. When I asked him if I could lie down for a few minutes, I'm sure he thought I was strange. These docs talk about OHS like it's no big deal. I also remember being told about the 1% death rate, that just about convinced me to jump off the next bridge. In reality, I'm very sure that my surgeon can do more than 100 operations without losing anyone.
You are already way ahead in the game just because you have found this site and already know that you have a BAV. I found out about both after my OHS.
Stick around, practice some relaxation therapy, and we are always around.

 

[Thwdp]

Hi Gerard - I want to post back to you to let you know your situation is not dissimilar to mine. I think it helps to know that there are others out there that are close in age, location, activities, and worries to yourself.

And of course, you and I are not alone - this forum is full of people how have, or are, experiencing similar things - I definitely found this site of help.

Let me tell you how similar your situation is to me - I was 38 when diagnosed with BAV after being very ill with endocarditis. That was 2 years ago and they explained what it meant and I was told that I wouldn't need to worry about surgery on it for a good 15 years. 15 months later I was told my left ventricle had increased significantly and I need surgery in the next 6 - 12 months. I had a real issue accepting it and went into denial - I wanted to continue to go surfing (my first love), snowboarding, skating, gym, everything - but this looked like it was going to stop me.

Back in Sep I was called back for a check up - and was told to schedule surgery sooner rather than later for an artificial heart valve and full OHS. It was supposed to be yesterday but has now been postponed until Jan 7th - ironically my birthday.

I hope this helps you know that I know what you are going through and I understand the fear and anxiety - but for me the way forward was information. Not just survival stats, but what they were going to do, what the repercussions of not having it done would be, how many times my surgeon has performed (successfully and not) this operation (I found lots of that on the NHS web site - not sure if that is applicable to your part of Ireland though?), what I will be able to do afterwards (I was told I will still be able to surf and snowboard but with more care and protection), warfarin, etc. etc. But be careful about the web for your info - it is undiluted and most of it may not be relevant to you and your situation. Go and see your GP (sometimes they have other patients in the same situation, like mine does) or if he is not experienced in this area the cardiologist who diagnosed you or the surgeon you will eventually have. Get together all your questions and talk to them directly about all your fears - and keep talking. That is what I did and it really helped - and I broke down in tears with every one of them every time because I was so scared (not to mention all my friends and family).

I hope this helps - we can and will get through this and we will have a normal active life afterwards - there is no doubt in my mind now.

One last thing - Karlynn is right - go for your CT scan, it is important that they get a clear picture of everything going on around the valve before they go in. The scan won't hurt you, and they need the info.

 

[ponygirlmom]

I went to see a physiatrist yesterday and he recommended I take diazepam before any procedures.

That's IT? You paid good money to see a psychiatrist because you're having severe trouble handling your upcoming surgery, and and that's ALL he did for you?

That is one CRAPPY psychiatrist.

Go find yourself a good PSYCHOLOGIST. Someone who specializes in helping people regain control of their lives, handle tough times and deal with anxiety and depression through a combination of discussion, mental exercises, physical exercise, group therapy and other things. The psychologist may refer you to a psychiatrist if he or she feels you would benefit from anti-anxiety medication. However, if this is the first time you have every suffered from great anxiety, I'll bet you do NOT have a chemical imbalance, and I'll bet you don't need meds.

You need to start exercising again IMMEDIATELY. According to your doctors there is absolutely no reason for you to stop exercising. You are making your anxiety worse by being sedentary. Also, it is important to go into surgery in the best physical condition you can. It really helps your recovery. Many people are very sick before surgery, or they are truly in danger if they exercise. You can bet that these people would have given anything to be able to be in shape before surgery!

 

[skeptic49]

Hi Gerard,

Welcome to VR from another proud bicuspid valve owner! What you are experiencing...the panic...many of us went through although perhaps not as severe as what you are dealing with. As others have said, you will get through this...and joining the rest of us here will be of comfort to you and will help with your questions and concerns. Seeing the surgeon, while frightening, was the BEST move that you could have made, believe me. As pointed out earlier, be sure to ask about the condition of your aorta, since bicuspid valve disease often does appear with dialation of the aorta.

I hope that you can get back to exercise and resume as much of a normal like as possible as soon as possible. Don't be afraid to post often here on VR.

Best wishes,

Jim

 

[Duff Man]

I had MAJOR anxiety for months after I found out about my aneurysm. I'm just now starting to feel myself again, but I'll never be the same person I was. I guess that happens to everybody just by aging, but it feels like I got old real fast.

 

[Ross]

I had MAJOR anxiety for months after I found out about my aneurysm. I'm just now starting to feel myself again, but I'll never be the same person I was. I guess that happens to everybody just by aging, but it feels like I got old real fast.

You forgot to tell him that we got tired of waiting and operated on you anyway!

 

[Nupur]

Hello Gerard,

Welcome to VR. I found out this summer that I have mod-server mitral
regurgitation and I have been experience regular panic attacks since.
I almost didn't get on a plane this Thanksgiving. I often have a racing
heart when driving which is the worst, because I feel like I am going to
black out and crash the car. I totally sympathize with you. At least you
are going into surgery soon, so you won't have to be in this state for a long
time, I don't know how long I'll be in the waiting room, and much as I am
terrified of OHS, being in the waiting room is worse in some ways.

My doctor gave me Xanax, which I now take whenever I feel loss of
control. It saved me during the flight (as the plane taxied away from
the gate, my heart rate was 140!). Please don't hesitate to take the
medication. I was asked to take it before I did my TEE. I think when my
time comes, I will ask to be seriously drugged.

Regarding exercise, I am in the same boat as well. I was going to the
gym 3 times a week, and now I am scared to walk uphill, inspite of
cardio telling me it's fine, and doing well in stress test and so on.

Recently, a doctor friend of mine who pratices in Sheffield UK told me
they use Positive Behavior Therapy in UK and I should look into it. I have
tried Yoga and meditation and it hasn't helped me a bit, I keep getting
panicky during the sessions.

Haven't really offered you any suggestions : ) but it helps to see you are
not alone. It IS a big deal! But soon you will be looking back on this time
and will be on your way to living a full life again. Until then, stick around
here, these folks are awesome!

Nupur

 

[Ross]

You need to start exercising again IMMEDIATELY. According to your doctors there is absolutely no reason for you to stop exercising. You are making your anxiety worse by being sedentary. Also, it is important to go into surgery in the best physical condition you can. It really helps your recovery. Many people are very sick before surgery, or they are truly in danger if they exercise. You can bet that these people would have given anything to be able to be in shape before surgery!

If his heart is enlarging, I would suggest a clearance to do so from the Cardiologist before resuming full excercise.

 

[zipper2]

Hi Gerald want to welcome you and glad you posted

I'm waiting for 2nd ohs jan 8th and 1st one was 16 years ago

i'm starting to panic at times now that i have a date.

It's only natural for us to have these types of emotions.

Take a deep breath and you will find lots of reading here

and lots of wonderful,experienced people to help you out.

I never had VR 16 years ago and i was a total wreck,2nd times easier

not cus ive been there once ,but cus of this place and support.

Welcome Home,were all sailing same ship in one way or another

zipper2 (DEB)

 

[Curtsmum]

Hi Gerard and welcome to the forum. I have been through your fears and panics but with my son who is the paitent. The waiting is one of the hardest part as your mind runs away and you can only think of the bad things. My son as been through 2 mitral valve repairs, the first time his lung collapsed and after the second surgery his blood pressure was to low, he had a small blood transfusion and then it went to high, he takes medication but he as come through fighting fit and leads a normal life as possible. He as a rare defect and will also need a valve replacement when he turns 18, if all goes well and he can make it that long. There are lots of people on here with different conditions, most having successful surgerys and recovering well. So stick around you will get lots of great help and advice and maybe you will be able to help people from the experience you go through. Take care and best wishes.

 

[Mary]

Gerald,
You're just experiencing a more severe manifestation of the fear that we've all faced.
One of the most incredibly hard things I ever did was to walk into the hospital where I was to have my replacement. I've sky dived, and jumping out of a plane is a piece of cake by comparison.
I hope the medication helps control your fear, and you might consider asking for an antidepressant too. There's no sense in being miserable while you wait.
In the meantime, you've found a group of people who understand the feelings you're dealing with, and will happily listen to you and even suggest help . . . what a deal!
Best wishes

 

[Bridgette]

If your doctor says it's ok, resume exercising asap. Ok, you might not be able to go out on your bike and get your heart rate way up there, but you'll be able to go for long walks which are great.
A walk gets you out of the house - and a change of scenery will be so good for you, if nothing else it helps you to stop brooding about your situation. That was my experience anyway.
You are a young, otherwise healthy man and I'm sure you will come through your surgery just fine.
You have lots of support on this site - don't hesitate to ask any questions you like - you will get lots of great advice and answers. Keep reading away on here.

Bridgette