Constant fear of death

[themalteser]

Hi friends,

Ok, here I am again asking your support. I have a near every day, all day fear of death, either me dying cause of my condition, even though I'm reassured, or my loved ones passing away. This fear is eating me alive, and perhaps the answer could be, go to a doctor or psychiatrist , but, all he'll do is shut my brain off with some meds(which I know they are good) but I'm a hypochondriac, and worry about taking meds.

Some close friends and my lovely wife, tell me that I really need to move on in life. I know now that my risks with the valve and size of aorta are very, very small, but I fear this very much. I have not had a clear answer in regards to the risks of my aorta, it's currently, the root 45mm or 46. Again cardiologist say that this is nothing to worry about, but then, I posted in a health forum and some other professionals, or claim to be, say that I really need to watch it!! Whom to beleive?? I started running, exercising etc, but I worry that I might drop dead!! Is it possible that my root will stay stable for many years? Does anyone had a stable size like this for many years?

Then I start fear my wife getting ill or my children, and even have tears just thinking about them, as if like its true! Then I worry about the loss of control when dying...etc etc perhaps, I need help! But I want to know if you've got any suggestions.

The fear is gone when Saturday night a drink a bottle of wine, but, don't want to turn into alcohol. I start to talk about it as a discussion when I'm drunk, so I'm sure people think I'm a very, very boring person!

Thanks

 

[themalteser]

Maybe I'm asking the impossible, don't know! Or maybe cause I'm originally from Malta, and people there would be telling me upfront to get a life more abruptly!

 

[OldManEmu]

Hi Malteser
I can relate to part of this my aorta was 47mm at the time of first surgery but couldn't be fixed because of my poor physical condition and only a 50% chance of surviving the off heart lung bypass time required to do the fix. It remained stable for almost 6 years until it passed the 50mm limit. In these 6 years my heart function returned to normal and the redo surgery was considered low risk, no greater then anyone else having a redo at 47 years old. In this time I was aware of the risk of aortic rupture however I kept in mind that this was less than that of surgery so why worry too much.
Why are you worried about your wife and kids dying if they do not have any health issues ???

 

[Madsometimes]

Root replacement surgery is normally done at 5 cm in the UK, or earlier if there is a rapid increase in size in a short period of time. Mine was done at 4.8 cm because it had increased by 0.4 cm in one year, and because I have Marfan syndrome.

My root stayed between 4.0 and 4.4 cm for 10 years, and in that time I had two high risk pregnancies. The first pg put me to 4.2 cm, and the second to 4.4 cm. The eventual trigger for surgery was not caused by anything that I can determine. We are all different, and no-one can predict how long you will stay stable for, so keep going for your check ups, and try not to dwell on it too much.

I think that some US surgeons are replacing at 4.5cm, because the risks of the surgery have decreased. Perhaps that is why people on other forums have said you need a sooner operation. Do you take a beta blocker or similar?

 

[kfay]

You need to at the least find a psychologist to go and talk to about your fears. They won't drug you up (can't prescribe), but perhaps will be able to help you with talk therapy. It really is a shame that there is such a stigma to seeking mental health help. If you find a good therapist, they will make a big difference in your life. And if they recommend you go to your Dr. for drugs, there is nothing wrong with that either. Is this really how you want to spend your life after what you've been through? There is help out there for you, you just have to seek it.

 

[epstns]

Malteser,

I don't know how the NHS works in the UK, but perhaps you could get a referral to a psychologist. These professionals do not prescribe medications. They help you to learn ways to control your own thoughts so that you don't have the extreme anxiety over things that do not truly warrant the worry. Maybe a psychologist can help you to get things settled down so that you can more fully live your life as you can.

Just a thought. . .

 

[Greg a]

I would NEVER say that I don't fear dying but after having "seen the light" I am comforted by the knowledge that I have virtually and briefly been there a few times. While you read my history of the last five years if anything good has come of it it is thats fact. When I hear of another passing and I say "they are in a better place" it is not just lip service. I hope this helps as I really feared death pre 2007 and know where you are at.

Godspeed

 

[Superbob]

I would NEVER say that I don't fear dying but after having "seen the light" I am comforted by the knowledge that I have virtually and briefly been there a few times. While you read my history of the last five years if anything good has come of it it is thats fact. When I hear of another passing and I say "they are in a better place" it is not just lip service. I hope this helps as I really feared death pre 2007 and know where you are at.

Godspeed

Greg has said very well what was on my mind. Psychologists can do only so much. Physicians can do only so much. There is a spiritual dimension to coping with life, which is always fraught with risks and uncertainties, no matter our physical condition. I am not advocating for any particular religion, but perhaps counseling along this line is available to you?

 

[karla]

Lots of really good advice above. Just a thought on psych meds....more and more, psychological issues are being thought of as physiological problems and treated very, very successfully with medication. The correct medicine, if needed, doesn't "shut you brain down" but allows it to function in a more "normal" pattern.
I suffered from severe episodes of depression since I was a teenager. Because of the stigma attached, I never sought help but tried to just power through the episodes. About 10 years ago, I decided I did not want to live this way anymore if there was a way to help it. It was the BEST decision I ever made ( other than getting the AVR, etc, of course ). I will be on an anti-depression med the rest of my life and I am ecstatic to do so. My life has never been better. As a result, my family is happier, too. I think of my depression as a physiological problem - just like high blood pressure, high cholesterol levels, etc that requires treatment

 

[themalteser]

All your advice are extremely helpful, it's weird, it is actually eating me alive, I constantly, constantly worried and terrified the least from death! I'm catholic, and should be the least one scared of this, but, don't know, though I like to think there is after life, something else tells me there isn't anything at all!

My aorta is the biggest issue for me, I don't like the fact I got no control on it, I am very reassured that risk is extremely low by various professionals, I still beleive I'm high risk, then I think perhaps surgery will be an option, and I get frightened that I will die on the table, and I keep dwelling on all these thoughts. Then I think of enjoying time with my family, and other thoughts come in my mind like, my wife can get ill or my children etc etc I hate these thoughts!

Greg, I'm intrigued to hear more of what you seen, can you please pm me?

Guys, as usual, you are so, so very helpful, I guess I need to be referred, but already had all this, I had cognitive behaviour therapy, hypnosis, etc and worked a bit but not a lot. I also had escitalopram for sometime and their withdrawal symptoms was awful!

Thank you again

 

[dick0236]

.....Again cardiologist say that this is nothing to worry about, but then, I posted in a health forum and some other professionals, or claim to be, say that I really need to watch it!! Whom to beleive?? I started running, exercising etc, but I worry that I might drop dead!! Is it possible that my root will stay stable for many years? Does anyone had a stable size like this for many years?

Then I start fear my wife getting ill or my children, and even have tears just thinking about them, as if like its true! Then I worry about the loss of control when dying...etc etc perhaps, I need help! But I want to know if you've got any suggestions.

The fear is gone when Saturday night a drink a bottle of wine, but, don't want to turn into alcohol. I start to talk about it as a discussion when I'm drunk, so I'm sure people think I'm a very, very boring person!

Thanks

I try not to give "advice"...but I will share MY EXPERENCE.

a) Believe very little of what you read on the internet from "professionals". A true professional will not, and cannot, give a medical diagnosis based on internet interprtations. If a doctor, that I have seen, and trust, tells me "not to worry, but
continue to follow my condition"....that's what I try to do.

b) I don't know your age, but I was very young, 31, when I was "smacked in the face" by my mortality....and chance of very premature death. In hindsite, I can tell you that it was a BIG waste of time, for me, to dwell on things that never happened. The earlier posts that suggest professional physcological therapy is good advice.

c) A "bottle of wine on Satuday nite" ain't a solution.

We are fortunate that if, and/or when, our "heart problem" becomes operable, there are ways to correct the problem. FWIW, my docs tell me that "someday" I will die from "something", but it "probably" won't be my valve. There are many on this site who have been where you are at and can identify with your fear and anxiety....I know I can.

 

[clfhangr]

malteser,
I am going to take a completely different path here.
So if you were to die suddenly what would be your biggest regrets. Are there things that are left undone. Do you have family that you want to take care of or provide for? With all this said I can say I have been where you are at. In the long run it was a combination of things that gave me relief and they are in the following order.
1. Help from the medical community to deal with your anxiety of sudden death.
2. Help from counsoler to give new tools to cope .
3. Make a list that specifically says if I was to die today how would I take care of the ones I love
4. Try to fullfill that list to the best of your ability.
5. With all of this in place it caused me to come to the conclusion that my death is out of my hands but it makes it much more easier to take if I know I have in place a plan for my survivors and their support
6. Get a plan with your healthcare providers to address your issue. If you don't like their plan get a second opinion. Once you have a plan follow it. It will make life so much easier with a plan.
7. Remember that you are not alone. YOu have so much support through this site and more than likely through your friends and family. Talk to us (which you already do) to them and use their past experiences to your advantage.

I am with Greg on all of this as during my kidney transplant I blew a majory artery and crashed and I now know as well that there is something better out there.
I take my life one step at a time and I follow the list I put together above and with this I know that I am doing my best to provide for my loved ones and take care of myself. This has removed a huge amount of anxiety and stress from my life.. Oh by the way I am having my second ohs next monday may 7th and doing all this and comparing it to my first go around it has made all the difference.

God bless you and just start taking it one day at a time.

Keith

 

[themalteser]

Hi ,

I've read all your messages and will reply later on tonight, I'm waiting for the train, and will be better to type from a computer at home. In the meantime, I am very grateful for your advice, and dick, your experiences and advice have always been food for thought to me, your points makes perfect sense.

Keith, would you mind telling me more why you think it's a better place after we're gone? Sorry, but I dwell on this elall the time, can't get round my head the word , the end, finished forever and ever and ever... If you prefer , please private message me?

I agree I will need professional psychologist to help me control these emotions, can't stay like this, it's killing me and my loved ones. Ps. I'm 29 and have a wife and children. (twins and a 6 year old)

 

[sarahsunshine]

Malteser,

Sorry you are experiencing this anxiety. Everybody has good ideas. I haven’t had OHS, but about 4 years ago my 14 month old son died in an accidental drowning in what we thought was a safe environment. Since that time, I have experienced extreme fear periodically, in the way that you describe. I fear that random accidents from very low risk situations could tear people I love and care for deeply from my life. I don’t feel, however, that it is near to the extreme that you describe, and I can easily rationalize and logically allay my fears. Personally, I see my fears as part of a healing process, healing my mind and emotions to recalibrate to a “normal” level. I’m not sure I will ever be as completely carefree as I was before the accident, however I do know that accidents happen and that there is a “better” place.

I think that Keith has a lot of good ideas, and that speaking with a psychologist (as suggested by many others) is definitely a good idea. I see that you’ve done this in the past without much success. A good psychologist is very helpful, and the correct meds area also very helpful. Meds are also not necessarily a permanent solution, but can be a step in reprogramming our thought process to look at the positives instead of the negatives. I’ve heard that it takes 3-7 years to re-wire a person’s brain, but that the amount of effort put in to *wanting* that change is the key factor in aiding the process.

A worry that I have from you postings is that you feel that meds will “shut your brain down”. This condition suggests that you find some attachment in the extreme fear that you have, and need to decide that you really want to let go of the attachment before you will find any relief from your condition. Perhaps, for some reason, you feel it is important that you are fearful? Once you can deal with this issue, then you may be able to release the fear more fully.

Lastly, My step son’s ascending aorta was 5cm prior to surgery, and he was a skinny 67lb runt (not short just skinny!). The reason for his surgery was not the ascending aorta, but the undersized mitral valve prosthesis (17mm St. Jude, replaced with 25mm On-X). He now has 3.5x the effective aperture size that he had pre-surgery… So I would say to listen to your medical team, and trust them. If you don’t trust them, and that is a cause of your fear, then get new doctors! If you do trust them, and it’s just your over-zealous internet searching that is causing you more fear than is reasonable, stop the internet searches and trust your doctors! You chose them for a reason!

 

[clfhangr]

The reasons I believe that there is a better place are these:
1. When I crashed during my kidney surgery I to saw the light and felt complete peace and contentment. Almost to the point I did not want to leave it when I got pulled back. And that felt like I was litery pulled back.
2. The peace and contentment I saw on my fathers face as I held him when he passed away. He did not have any drugs on board at the moment of death and he was completely at peace.
3. The contentment that has been placed on me with this latest surgery compared to the first. I have put a list of scenarios in place if something happens to me but don't get me wrong I still get sad about leaving my family especially my 6 year old son. But to address my son I asked of my best friend that he take him under his wing if something does happen to me.

Like you I have children. 5 of them 20 down to 6 years old. I have done my best to provide for them if something happens to me. With that comes a piece of mind knowing that I have done my best.
And now lets give credit where credit is do. I do believe in Jesus and I know that everything will be alright in the end as long as I do my best to prepare if something happens to me. I believe I got the easy part. If something happens to me I know where I am going it is the prepartion for my family and knowing that they will be taken care of when I am gone that has given me the most peace.
Like I always say. We all gotta die of something, but the key is knowing where we are going.

God bless,
Keith

 

[Jkm7]

<snip>


Greg, I'm intrigued to hear more of what you seen, can you please pm me?

Guys, as usual, you are so, so very helpful, I guess I need to be referred, but already had all this, I had cognitive behaviour therapy, hypnosis, etc and worked a bit but not a lot. I also had escitalopram for sometime and their withdrawal symptoms was awful!

Thank you again

Why do you ask for a private PM from Greg? We would all like to share in that conversation IMO
To take it privately deprives the rest of us.

OF COURSE, THAT WHOLE DECISION is GREG's to make.
But I, too, would like to hear any comments he wishes to share.

 

[pgammo]

themalteser,

I am 25 years old and married with two daughters and a son due in July. I found out about my bicuspid aortic valve leak 2 months ago and will be having my valve replaced June 1st. At first, I was extremely stressed/depressed/pathetic/lethargic. I had a constant fear of death -- several times per hour. I had and still have anxiety attacks and panic attacks at times, but they are fewer and further between now. I, too, fear my family members becoming ill, but dwelling on the fear is no way to live. I do not want to die and leave my family without a husband and father, but I have been assured by this website and my doctors that this is a pretty common and very successful procedure; I believe the mortality rate is less than 1% and even less then than if you are young and don't have any other health issues.

In the end, we will all fall victim to the ultimate statistic: 10 out of 10 of us will die at one point or another. What helped me was putting my faith and trust in my Lord and Savior Jesus Christ and repenting from my sins. Scripture tells us to be anxious for nothing and to endure all things for God's Glory; Christ promises rest to all of those are weary and burdened as long as you turn to Him. He also promises to help us carry our burden when it becomes too heavy. I have been a sinner and an abomination to God my entire life, but through Christ, I have been redeemed and made blameless; as a result, I have inherited eternal life and will pass to His Kingdom when He is ready to take me.

I pray to God daily to deliver me from this surgery, as in heal my heart, but at the same time, hasn't He already given me a second chance by revealing this problem to me? I believe so! You see, we are already blessed by God for knowing about our condition. Thousands of people die every year from heart failure because they were unaware they had any ongoing issues; we are aware of our issues and getting them resolved. Even being alive in a time where OHS is possible, wow! That, my friend, is a blessing.

There are two possible outcomes that I face: waking up after surgery to my wife, daughters, and family OR waking up after surgery to my Creator, Lord, and Savior. Either outcome is a blessing! As a Christian, you are promised eternal life, assuming you believe correctly. Once you become Christian, you will no longer fear death or the thought of Hell, as you will find the ultimate comfort in Christ Jesus and His free gift of salvation.

You can rest assured that there is an after-life, and it is the Heaven described in the Holy Bible. We are WONDERFULLY and FEARFULLY created; our creation is NOT a result of chance. Just look at the complex design of our hearts -- that doesn't even compare to our eyes, brain, nervous system, etc. Furthermore, examine your soul. Your soul inhabits your body, and it is mind boggling to try to think about your soul ceasing to exist after death.

Visit my blog for more information or if you have questions! http://petergammo.blogspot.com/

God bless you, my friend. I pray that you have an incredibly successful surgery and a pleasurable recovery.


--- Also, if you would like to chat, please feel free to PM me ---

 

[markp66]

I think it is natural to think about death etc when you have a heart condition. I still do every so often and before my op I did much more frequently.

However, recently I have seen footballers drop dead (and nearly as in Muamba's case) at their peak physical fitness, my friends cousin died at 23 in a skiing accident etc etc. Anyone's life can be taken at any instance, we just don't know.. The best we can do is be healthy and careful and have as much knowledge and awareness as possible.

You are very lucky, there are clearly many people in the world who have your condition and won't be diagnosed with the problem until it's too late. The chances of anything happening are clearly very small or they would operate on you. One thing I would say is take advice from your cardio, or maybe get a few opinions but looking on the internet, getting advice from complete strangers on medical issues is a bad idea and can mess with your head! It certainly did with me!

And the best advice I have been given is this- DEATH IS ONLY BAD IF WE THINK ABOUT IT! Lets be honest you have two possibilities after you die- either you will end up in some kind of heaven (or hell!!) or there will be nothing- and if there's nothing then you won't know have a chance to think how rubbish it is if there isn't a heaven!

Have you heard about Losartan? Apparently it can slow the rate of dilation of the aortic wall.. This is still not 100% proven but have a read of this article (although this is talking about Marfan patients the principle is the same)

http://www.news-medical.net/news/2006/04/11/17249.aspx

Good luck and try to relax (and I know it's easier said than done as I was in your position for a while). Even when (and this could be a few years yet!) you finally need surgery it's not the huge deal it once was.

 

[Ray Norsworthy]

Karla is absolutely correct, I think. Stoicism at the risk of mental & emotional impairment is lamentable, to say the least. I'm not the least bit religious--quite the opposite, actually--but I do think meditation or concentrating on a hobby project, etc., plus the right MEDS can make an incredible difference. For me, there was nothing worse than that terrible sinking feeling when you suddenly feel overwhelmed by feelings of doom. I came to find out (with a watershed of relief) that it is physiological, not a personality or trait indicator. Best wishes!

 

[Paleowoman]

Hi Malteser - your post touched a chord with me because I go through periods when I feel like that - afraid of dying and afraid that my husband will die, even though there's nothing wrong with him. I think it's to do with my overall anxiety about my health problems and because I have a son with a disability and I worry about what he would do if I were to die. You have young children so you know they need you. I'm in my late 50's and I often also think that even if I'm okay with my valve replacement there's still only 20 or so years left for me and my husband - it gets like that and feels too quick to the end.

I have no hesitation in speaking to my GP when I get like this and I get some anti-anxiety medication from him, usually Lorazepam - they only prescribe a few tablets at a time as it could be addictive and probably has a high street value LOL It helps me to know I can take it when I'm feeling really bad. I don't want talking therapy because I don't want to be patronised - our anxieties are very real and very natural, that's something I've read often on this forum since I've been here - but if you want some counselling your GP can refer you easily. He could even refer you for counselling and give you some anti-anxiety medication !

all the best,