Constant fear of death

[epstns]

Anne - Psychological "talking therapy" doesn't need to be patronizing. A good therapist can help you to better understand yourself and your situation so that you can then decide what and how to change to make it more to your liking. I'm not downplaying personal choice - that is always yours, but there is often a real benefit from therapy for those who choose that route.

 

[Paleowoman]

I understand that Steve. I realise I was a bit heavy handed there as regards psychological therapy ! I have had full psychotherapy in the past which was intensive and over a period of three years and very useful - but I know that kind of therapy is not available easily.

As I wrote, Malteaser can definitely get a referral for counselling from his GP.

I forgot to mention in my message the very useful book "Coping with Heart Surgery and Bypassing Depression" by Carol Cohan. They do recommend a certain kind of psychological therapy, not sure that is easily available in the UK.

 

[carolinemc]

You have to be careful about some health forums, they like to make people think about nothing more than gloom and doom. They are not very optimitic about live in general. You are going to be fine. I do not know how old you are, still pretty young, I'm sure, do not listen to those people, listen to your friends and loved ones, they know more. You need to be optimistic about life, it is Spring, for heavens sake. The birds are singing, dogs romping in the grass, children playing in the park. Think about life more, it is more stressful thinking about what if. I did dabble into the what if, but was more into living, made it worth living for. And I had one goal to look forward to, a tv show, Enterprise. That was a few years ago. It was starting a new series and I wasa about to have surgery. So, I began a journey of wanting to live to see this show and guess what? I survived and got to watch the show. That was some goal. What's yours? Try to make a goal to look forward to after surgery and you will destress. Hugs for today.

 

[Marcia58]

Malteser,

I think we've talked before. I believe you said earlier in this thread that if you were in Malta, people there would tell you to "get over it" so I will try to be kind but firm. You are a man of faith, so I will address you as such and call on you to act as a man of faith. I will not use my words, but those of the Bible and the heritage of the Church. First from Saint Paul:

1 Corinthians 15:12-22

Now if Christ is preached, that He has been raised from the dead, how do some among you say that there is no resurrection of the dead? But if there is no resurrection of the dead, not even Christ has been raised; and if Christ has not been raised, then our preaching is vain, your faith also is vain. Moreover we are even found to be false witnesses of God, because we testified against God that He raised Christ, whom He did not raise, if in fact the dead are not raised. For if the dead are not raised, not even Christ has been raised; and if Christ has not been raised, your faith is worthless; you are still in your sins. Then those also who have fallen asleep in Christ have perished. If we have hoped in Christ in this life only, we are of all men most to be pitied. But now Christ has been raised from the dead, the first fruits of those who are asleep. For since by a man came death, by a man also came the resurrection of the dead. For as in Adam all die, so also in Christ all will be made alive.

Then from the Church Fathers:

Apostles Creed
I believe in God, the Father almighty, Creator of heaven and earth, and in Jesus Christ, his only Son, our Lord, who was conceived by the Holy Spirit, born of the Virgin Mary, suffered under Pontius Pilate, was crucified, died and was buried; he descended into hell; on the third day he rose again from the dead; he ascended into heaven, and is seated at the right hand of God the Father almighty; from there he will come to judge the living and the dead. I believe in the Holy Spirit, the holy catholic Church, the communion of saints, the forgiveness of sins, the resurrection of the body, and life everlasting. Amen.

Now, you either beliieve these things or you don't. Perhaps you are like the man in the Gospel, who said to Christ, "I do believe; help my unbelief." (Mark 9:24) Perhaps you need to pray the same prayer.

Assuming that you DO believe what you repeat in the creedi, what you read in scripture, then I believe the next step is what Saint Paul calls for in 2 Corintians 10:5:

We are destroying speculations and every lofty thing raised up against the knowledge of God, and we are taking every thought captive to the obedience of Christ

Christ faced death, and in obedience to the Father, trusted that there would be more after the tomb.

It's time to change your "self talk"--the thoughts and ideas you feed yourself. When doubt and fear try to creep in, tell them "No!" and counter attack with the Creed. Copy scriptures on a notecard and carry it with you. A couplel good ones:

My times are in Your hands - Psalm 31:15

Your eyes have seen my unformed substance; And in Your book were all written The days that were ordained for me, When as yet there was not one of them. - Psalm 139:16

Now is the time to "put your money where your mouth is." It's time to walk in the light of the faith you've claimed all these years. Do it for yourself, your wife, your children. As the prophet Nehemiah said:

“Do not be afraid of them; remember the Lord who is great and awesome, and fight for your brothers, your sons, your daughters, your wives and your houses.” - Nehemiah 4:14

Now I've quoted the Gospel, the Epistles, the Psalms, the Prophets, and the Church Fathers. Thus ends my little homily.

Marcia

 

[Roxx]

Malteser- I am the king of anxiety, and having negative loops of medical stuff running threw my head, PM me if you ever want to chat..... I am still convinced that 95% of the stuff we worry about is things that will never happen.

 

[themalteser]

Dear all,

Wow, you are truly a family! I'm absolutely amazed by your support and responses, I had more meaningful responses from you, then from my family and friends. Thankyou, really!

Ok, I need to get a grip, I do not know where to start, but I have to. I'm going to take advice on getting a good psychologist, hopefully I get referred through the NHS. My fear is that I tried these already, CBT, hypnosis etc, and although it did help for a little bit, I don't feel it was great, because everything was literarily by the book, and obviously. Hypnosis was self referral, and there I found myself quite peaceful, bit, it was really expensive. I tried medications, such as escitalopram, diazepam and clonazepam. Was concerned about benzodiazepams, but they relaxed me. The escitalopram, I'm not too sure if it helped, but, when I stopped it, the side effects were awful, so again, I'm worried to take them again.

Faith in Christ, I am religious and i do believe I need to regain faith, I want to believe but unfortunately, I lost my faith quite a bit, I worry that there is no life after dead, and I'm not by all means trying to be complicated, but, if there is, why it's such a mystery? , that is why I'm intrigued to hear about Greg and Keith's story, because that can be very reassuring for me, that is what I'm seeking for constantly.

Furthermore, I am not trying to be synical, but, I've been told many times that I should consider myself lucky that my condition is found and could be treated. But, if God really loves me, then why would he give me this condition I'm the first place, and if Death is nothing but we just pass through a "dream", I.e. there is no such thing as actually dying, then, why I'm lucky, and why does God loves me to give me a chance in treating this condition? If for God death is not the way Im perceiving it? Hope I'm making any sense here.

Perhaps, Im worried, anxious about death, anxious about my loved ones passing away, anxious that, this is it, a few years and boom, I'm gone forever and ever and ever. I know, I won't know, but till I'm conscious I'm really scared of this and can't switch it off..... Even writing this, I'm feeling pressure in my left chest, my heart pounding and my arm is pressuring, so I guess, I'm in a verge of panic attack, and it's doing my headin!! Because all I.m thinking about is that my heart is going to stop.

Some of your stories really touched me, and honestly, I'm so grateful to all of you answering my issue. Please accept my apologies for 1, being so boring, 2 , some , perhaps, sentences above that are not making sense, I'm in a state at the moment and 3 for not replying to each of you individually.

Hope I can hear more from you.

Thankyou

 

[dick0236]

..... I am still convinced that 95% of the stuff we worry about is things that will never happen.

I wholeheartely agree.

 

[karla]

The place to start is at the beginning. You said you decided to see a psychologist....did you make that phone call to get things in motion? If not, do it!!
A philosopher I am not so will only give a thought about a statement you made regarding the escitalopram...you said the side effects were awful when you stopped it. Does that mean things were BETTER when you were on it???
Please let us know when you take that first step to get things under control. There are lots of concerned people here.

 

[Scott]

Alot of us felt the same way. I know I did. I cried so hard a few times after. Not for myself but mostly for my family. You just need to dig deep and be strong. Get a plan. Plan for the worst and hope and pray for the best. It's been 7 months since my surgery. I still struggle with issues but the hope of living a normal life is now mine. It will be yours too. I struggle with my inr, the food I can eat, all sorts of things. Life has changed. It's different now but not bad. It's a wonderful second chance and now I have a little more control over my destiny. You just need to get to the point that you accept the place you are now and get a plan to get better. Stay focused on living and moving forward. It really is going to be ok.

 

[Ray Norsworthy]

The human body is made up of billions & billions of individual tiny creatures, each one fulfilling its destiny & then dying off. Yet the whole remains. My belief is--& this is shared by a lot of scientists--is that all of us individuals make up a whole creature called the human species, & are at the center (because of our consciousness) of an ever widening circle of all living life forms (many of which, of course, are not capable of thought, but live only by nature's programming). In other words, to use the cliche, we are all ONE. The more a person becomes conscious & aware of this connection, the closer we come to a kind of godhood, & with it the realization that each person fulfills his destiny & then dies, but that person's thoughts, his energy, is never lost to the universe. On a more finite scale, we live on for a long time through the people we leave behind. This gives me all the comfort I need.

 

[Ovie]

Anxiety is stress that you cannot control. Things that are out of your reach. Although I'm not one of faith, and my beliefs subside I'm sure with a lot of members here, I would imagine that if it's your time to go, then it's your time to go. You need to find clarity in your life. You have a wife and kid(s), live your life to the fullest. Like Dick said, you're not going to get professional advice online. I've had major concerns and shared them on the site, but that doesn't mean just because I got an answer on here that I'm not going to consult my doctor. I went through an awful year, every day waking up thinking I was going to die. All day, everyday. I should write almost a will if you want to call it that, different thoughts every day. It was torture. I got cat scans, and all types of tests done. Ended up being panic attacks. My anxiety had decided to extend to panic attacks. I tried different meds out until found one that works. I will say, over the last 5 years, I believe the meds have made me a little cloudy, I'm forgetful or find my self dazed out or daydreaming more. But I'll take that any day of the week compared to how unmanageable my life was before.

I know all of this is so much easier said than done, but you needs to start somewhere. I believe a psychiatrist and therapist would be a great start IMO from the information I've gathered.

Best of luck, and stop worrying about the next life so much and enjoy this one!

 

[themalteser]

I want to thank you all for your support. Just to update you, My doctor wanted to put me back on drugs, , but he knows how I felt about it, so instead,he said that referral to a psychologist again will be helpful. He told me that he wants to follow me up monthly, and see how I'm getting on with my thoughts.

I also spoke to a surgeon who has successfully implemented the exostent sleeve around Marfan patients aorta's, professor pepper, and he said to me that this procedure has not been tested on bicuspids patients yet, but he thinks it will be helpful. He told me that he submitted a grant application about this, and will know this summer whether its approved. In the meantime, he told me that I'm safe as long as it does not grow by 3-4mm(beyond the error of measurement), which might take a very long time.

In the meantime, I'm trying to search on the Internet what is the mean dimension of aortic root dissection or rupture. Does anyone know where to find it? ... Electlive?? Perhaps I should stop searching, as I'm not helping myself, but, just can't control myself!!!...

Again, you're all fantastic. Thank you.

 

[ElectLive]

In the meantime, I'm trying to search on the Internet what is the mean dimension of aortic root dissection or rupture. Does anyone know where to find it? ... Electlive?? Perhaps I should stop searching, as I'm not helping myself, but, just can't control myself!!!...

Ok, I'm going to give you a "do-over". :angel: I'm going to pretend I didn't read this. Ask me again, and I'll think about it, but trust me, you don't want to know. :eek2:

Now, that being said, I'm not specifically aware of a mean dissection diameter for just the root, anyway, so what I do know isn't that relevant. I've seen several studies of thoracic aorta dissection in general, both specific to BAV and more generalized patient groups, but I haven't seen one focused only on the root. I touched on this in the other thread also, mean diameter isn't the best measuring stick either, since surgery is recommended prior to the mean, due to the seriousness of what happens to the 50% of patients who dissect or rupture before reaching the mean. So anyway, despite my humor, I am actually serious about encouraging you not to search for these answers. Dissection stats and worrying about what might happen aren't too good a combination.

 

[themalteser]

Hi elective, thank you for replying. I should have said please ! Will this help my request? and, thank you.

I understand that the statistics are more specifically related to the ascending part, after the sinitubular junction. My cardiologist told me that , the ascending aorta in persons with BAV, although relatively rare next to Marfans or other connective tissue disorders, is the most prone to get weaker. The aortic root on the other hand, is not as much of concern as the ascending part, and a lot of people with BAV , we're born with the root larger, so, doesn't mean it dilated by time, and that's why some people never know about BAV or enlarged pipes.

If I have to think of this numerically, I try to make some sense:

Approximately 2% of the world population have BAV, that's around 14 million people with BAV(being 7bn population) I read that 20% approximately of BAV have enlarged aortas so that's : 2.8million, risk of dissection is about 0.5%(correct me if I'm wrong) that's 14k people in a life time. Does this make sense? So perhaps, that's why there is no proper investigation on people with BAV, because the numbers are small? But in Marfans, the numbers are much larger!

 

[ElectLive]

I understand that the statistics are more specifically related to the ascending part, after the sinitubular junction. My cardiologist told me that , the ascending aorta in persons with BAV, although relatively rare next to Marfans or other connective tissue disorders, is the most prone to get weaker. The aortic root on the other hand, is not as much of concern as the ascending part, and a lot of people with BAV , we're born with the root larger, so, doesn't mean it dilated by time, and that's why some people never know about BAV or enlarged pipes.

If I have to think of this numerically, I try to make some sense:

Approximately 2% of the world population have BAV, that's around 14 million people with BAV(being 7bn population) I read that 20% approximately of BAV have enlarged aortas so that's : 2.8million, risk of dissection is about 0.5%(correct me if I'm wrong) that's 14k people in a life time. Does this make sense? So perhaps, that's why there is no proper investigation on people with BAV, because the numbers are small? But in Marfans, the numbers are much larger!

Very true about the ascending aorta being the more primary area of concern with BAV. I remember reading one study that showed that about 70% of those with BAV and aorta dilation had it only at the ascending aorta while only 10% had it in isolation at the root. The remainder had some combination and/or also arch dilation. So strictly root dilation, particularly to the point of dissection, with BAV doesn't get much attention, and likely for very good reason, since dissection incidence (in other words, the # of cases surgeons see) is certain to be lower.

Interestingly, the incidence of BAV dissection cases (approximately 15% of all dissection cases) is often higher than Marfan. While the risk of dissection is much higher with Marfan (one source indicates 40% vs 5%), there are also far fewer people (1 in 5000 with Marfan vs 1 in 50 with BAV) who have it. Further, I think your BAV percentage numbers are slightly off. In my understanding, about 30% of those with BAV present with complication at some point in life. Of that 30%, for those that actually undergo surgery, around 20% also undergo surgical repair of the aorta.

Anyway, relative to numbers, maybe look at it this way: the Cleveland Clinic has operated on more BAV patients than anywhere else in the world, but the number was only 4,700 patients as of 2010. So, even at the "busiest" location, still just not that many patients, particularly when subdivided down into those with concomitant aorta repair within a reasonable study period time. They have done a BAV study, though, over a ten year period, with 430 patients. Only about 6% of the study patients had acute dissection, though - 25 total patients. So a very low number to draw conclusions from.

The risk of aortic dissection, particularly at the root, in those with BAV is pretty low overall and certainly should be even lower in those that are monitored. By the way, back to your original question, mean diameter studies often don't account for body size and other risk factors either. Case in point, I've read that as many as 80% of acute dissection cases also involved hypertension. So, factor in all the undiagnosed cases with other risk factors not under control, and risk overall for well monitored patients such as yourself should be very low.

 

[themalteser]

These are very interesting facts, thank you for sharing with us your knowledge elective , you are a real asset to this forum. I suppose I can understand why the incidence of dissection with BAV patients than Marfans, because Marfans have physical features that are also distinguishable, and doctors can order tests to detect abnormalities, and treated before complications happen. On the other hand, BAV's don't have any physical features to raise any concerns, and therefore unless it's found incidentally, the only other way to find this is when complications occur.

That is very true that statistics don't take into account the body size and risk factors. I suppose it's like heart surgery statistics, they don't take into account the age, condition of the person etc.

In terms of heart surgery, after someone who had heart surgery on the aortic root or aortic valve or both, is it true that the live expectancy is that of a normal healthy person? I just cant get my head around that, my cardiologist tells me that this condition, if it ever goes worse, is treatable and fixable, but then I have to get follow up all my life! Maybe I'm not taking things into perspective here.(maybe I should open another thread on this)

 

[dick0236]

In terms of heart surgery, after someone who had heart surgery on the aortic root or aortic valve or both, is it true that the live expectancy is that of a normal healthy person? I just cant get my head around that, my cardiologist tells me that this condition, if it ever goes worse, is treatable and fixable, but then I have to get follow up all my life! Maybe I'm not taking things into perspective here.(maybe I should open another thread on this)

It is true that the life expectancy of an Aortic valve replacement patient is that of a normal person. I understand that it is difficult to accept that this is true......been there, done that. My normal life expectancy was 73 when I had the surgery(1967) and I am now 76 and very much alive and kicking. In fact I just came in from walking nine holes on my favorite golf course. I can tell you, from experience, that trying to answer all of the "what ifs" is a waste of your time. Like your doc says...."if it ever got worse, is treatable and FIXABLE".

Followups are no big deal. Until I was in my 70s, I had a followup visit to cardio every two years. Now that I'm getting old (LOL), I have to get them annually. I like that, because it give me "peace of mind". My docs now tell me that I will die someday, but it brobably won"t be due to my valve.....go figure.

 

[chrisc]

themalteser,

You, Roxx and I suffer from a severe anxiety component which makes managing this situation a bit more of a challenge for us compared to those without, but I have some news.

Due to my anxiety I have gone for multiple 2nd, 3rd and even 4th opinions. My insurance company must HATE me, lol.

In any event I have a root of 4.2 and an accending aorta of 3.5. I saw a surgeon today whom I had sent my echo and CT images earlier this week. He walked in and said "what are you doing here, I reviewed your records and there is nothing wrong with you?". I further explained my concern over the 4.2 root and 3.5 AA, to which he responded 4.2 is a mild dilation. We don't get ready for action till the 5-5.5 range. He told me I am suffering from VOMIT, victim of medical imaging technology.

His recommendation was to refrain from heavy lifting and live life with annual or bi-annual MRI. Only time will really tell for all of us, and we need to keep and eye on things with our Doctors, but it appears we should be stable for some time, maybe forever.

I've also been told that the sample set they have data on is mostly people whom NEEDED intervention. If you were a mechanic at a Honda dealer, you'd see a lot of Hondas needing repair, but 98% of them are on the road trouble free.

I found this info a bit comforting and hopefully you and Roxx do too...

 

[2legs]

Scared

Scared

I understand being scared. I also am scared. I mentioned it here and someone recommended anti anxiety drugs. I saw my doc yesteerday and got some xanax. Very low dose but it does seem to help. I love this forum but sometimes it makes me more scared when I see all the things that can happen. I am trying to stay positive but having nearly died before with an unrelated illness it really makes me think. I see my cardiologist on the 19th for a new echo and he will be going over it directly after with me. I think this will answer a lot of questions I have. I can't imagine anyone not being scared facing this but this forum has given me a lot of ideas about other things that may pop up during this surgery. I am 62 years old and really don't know what my heart is like except that my aortic valve is getting extremely tight. I have heard that Spokane Sacred Heart is one of the leading cardiac care hopitals in the country, that helps.
I am trying to figure out how I can get right with God. I don't know where to start. I am Catholic but have never practiced it since childhood. I don't know who to talk to about this. Maybe someone could set me straight. When I almost lost my life before I spoke to a priest from Africa. I got a lot of comfort from that but I just don't know where to turn. Any suggestions? I would like to go into this with a clear conscious. Thanks for listening.

 

[themalteser]

Dick0236 - I've got so much respect for what you tell me. I'm so naive, I admit! thank you for replying to my post, you do give me alot of courage, as all my fears are nothing next to your reality of having been there, done that.

ChrisC- You're right, this anxiety is eating us alive.... Is there a way to stop it? I say to myself, right, thats it ,I'm going to ignore my symptoms and recognise them as anxiety. But, than, new symptoms starts, like achy arm etc. and that's it...I start ruminating about me having surgery, dying etc etc.... Just like you, I've emailed various surgeons and consultants around the world, no joke, including David Tirone, Magdi Yacoub, Peter Skillington etc.... and they all say the same, and I still carry on!!... I sometimes think whether it's best to get this over and done with, have the surgery and get on with my life, but, my cardiologist entirely disagrees with me, and just like you, he told me that surgery might not be for many many years!! could also be never!...I asked for other opinion about this, and all agree with my cardiologist.... So, 1. I live with fear of death, because I might need surgery, 2 I fear death, that this will rupture or tear, and than I fear my loved ones passing asway.......and symptoms makes everything else worse.

2legs - I'm catholic aswell, and just like you, I don't really practice my religion alot. I beleive in God, Jesus and all I've learnt, but don't beleive in church (Contradictory I know), but why should I go to church, and pray infont of a statue, or an image, when God himself condemns replications of him….. Then again, I don’t pray… perhaps I should do and maybe my anxiety will start helping, but then I feel that I’m only praying because I need something… and my faith drops again, because I realise that I’m a very weak human being – Just as I believe that loving someone, is not really loving the person, but in reality, I’m only loving myself WITH the person, cause they bring me happiness etc.. I worry about my family passing away, because I’m afraid to be without them, and how much I suffer…. So it’s all about me, me me!!!

I don’t know where to start either, pills, counselling, religion, meditation…. There must be something out there that can help!! Surely!.... Just don’t know where to find it….