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Fear and Depression
I’m 34 years old and was born with a congenital heart blockage. I had my first pacemaker put in when I was 16 months old. Now, don’t get me wrong, for most of my life I never really paid much attention to it. It was just a part of me and I did almost anything I ever wanted. Every now and then, I couldn’t do something like play football, but for the most part I was a normal kid. Then, when I was 27, I was told that I’d need an ICD. It wasn’t so much that they thought I’d drop dead at any second, but it was put in as a precaution. Well, I just had my third ICD put in about a week ago.
Two years ago, I had an episode where I almost passed away and was unconscious for two weeks. That episode forced me to go on disability since my doctor told me that I needed to stay away from stress. Since then I’ve sank deeply into depression and fear of being shocked and more importantly dying and leaving my wife behind. I’ve never been shocked, but I’ve had irregular rhythms where the device paced out of it on its own. I was evaluated for a heart transplant at the Cleveland Clinic, but they don’t feel I need to be on a list at this time.
I think living with this for 33 years is starting to wear on me. I used to look at my life as mainly normal. Now I worry about my future. I keep wondering how long I have left. I think it’s only a matter of time. I know we all eventually die, but I sure would like to make it to at least 50. I know that still sounds young, but look at it from my perspective, most people aren’t lifelong heart patients like I am. I just don’t know how to feel anymore.
11 Comments
Thank you
by B-Rad78 - 2012-04-19 09:04:39
I just wonder how you get your mind off things, though. I've already sort of made a bucket list of activities, and I'm slowly checking them off. Don't get me wrong, it's great to do something, but it's also depressing that I have a bucket list.
Fear of Dying...
by donr - 2012-04-19 10:04:54
...It grips all of us at one time or another - perhaps not quite as dramatically as in your case, however.
Sounds like you were doing fine till some well meaning Cardio essentially made you stop living because he didn't want you to face stress. I don't know how you lived before, but it sounds like you were LIVING!!!!! Enjoying life to the fullest. To quote Auntie Mame "Life is a banquet & some poor S....of....B.....still starve to death" This sounds like you since going onto disability. You made it sound like you are merely alive, not LIVING!
Take the advice of whoever posted just before me & go rent the flick "MAME" w/ Lucille Ball. See if that doesn't describe your situation. Then go out & LIVE, just like Agnes Gooch (you'll have to rent the movie to find out her story.)
B-Rad, we have a certain parallel here. I'm 75, going on 12 & my family is trying to kill me. Yep, just as if they were putting a gun to my head. I keep getting the line "Dad, you don't want to do that" - or "Dad, let me do that, you can't!" or "Dad, you SHOULDN"T do that, your back can't take it." I do it ANYWAY! If they had their way, I'd be sitting on a couch, settee, sofa (or whathaveyou) slowly turning into a potato! In the FWIW Dept - I keep telling my Cardio &/or his head nurse all the whacky stuff I'm doing. She says "Don, you're nuts." He says, "What good will it do me to tell you 'No,' you'll do it anyway."
I think that you have more stress dong nothing than you did working. Now all you do is think about dying. What else is there to think about.
You said it already - we are all going to die sometime - why not enjoy life till the day that happens. Get your mind occupied w/other things - like some long range plans - & I'll be looking forward to an invite to your 50th. Plan on having a 90 yr old there, w/ a back that's about 125, & we'll all be OK.
BTW: I have tickets to the banquet...
Don
visiting
by Alma Annie - 2012-04-20 01:04:01
One way you can take your mind off things is to help others. There are many elderly people out there who are housebound, lonely and would just love a visit. If you are not up to going out then phone calls are the way. I think the Red Cross organises these sorts of things. You can make some good friends this way too.
I still think that laughter is one of the best medicines. Don't even think about a bucket list, just things you would like to do and achieve in your lifetime, however long you might live.
Alma Annie
Disability
by Pookie - 2012-04-20 01:04:03
Hi:)
I too am on disability. Have been since December of 2006. I had my pacer in late November of 2004 but for many reasons (all medical) I finally had to wave the white flag and surrender my beloved desk to someone else.
That's when I feel into a deep deep depression because I didn't feel like I was worth anything to anyone any more. Not that work was my life, it wasn't, but I did love my job.
For the first 3-4 yrs on disability I allowed that label to define me. I didn't recognize that at the time, it wasn't until a dear friend of mine told me to my face that she was tired of hearing me use that word and gave me a gazillion examples of how I fell into it's depressing grasp.
It took me a while, but I eventually drug myself out of that hole and started to live again. I have a bucket list too, but it's really just a list of things I want to do, not necessarily before I die, but rather - just things I know will make me happy.
Falling into a deep depression doesn't happen over night, so give yourself some time to get out of it. It's mind over matter in my opinion. And if you need to go get some professional help, there is no shame in that. I still go once a month...why?...because I like my shrink and it's nice to always leave with some good tip for the day.
The key for me was to start getting out of the house. I could write a small novel but the other posts above mine pretty well sum it up.
If not for you, do it for your family:)
Take care,
Pookie
One more thought...
by Pookie - 2012-04-20 02:04:09
I kept thinking about what you wrote and got back out of bed to write:
What do you think triggered your fear and depression? Prior to receiving your latest device it sounds (to me) that you were living your life until you were forced (?) onto disability. Do you think this fear & depression came from being on disability - like what happened to me? if so, I really really think that perhaps it's time to go speak with a professional. You don't have to feel this way. There is an answer to get that out of your head. You are young, you have a life to live and a family. I just don't want to see you do what I did and hibernate in the confines of your home.
That's not living ~ that's merely existing...you don't want or need that.
Night night,
Pookie
Things that don't work
by ElectricFrank - 2012-04-20 02:04:25
There are a bunch of common suggestions that seem to make sense, but generally don't work.
*Keep busy and get your mind off it. That's a loser. Your feelings are real and your brain wants to deal with it. Talk it over with your wife and let this be something that increases intimacy. Its what you don't know that is scary.
*It doesn't do any good to stay awake or alert in case you start to die There's nothing you can do about it if it happens, and stressing yourself out just increases the chances for trouble.
*Setting goals for time left to live is just kidding yourself.
Suggestions that might help:
* Have a serious talk with your doctor about your prognosis. In particular ask what your chances are of dying and why. You will likely have to be very direct about asking. Most docs don't like to talk about it and get evasive. Even if you can't get the information you want, just being direct can help deal with it yourself. Just before I headed into OR to get my pacer, my wife ask the cardiologist what my chances were of dying on the operating table. I relaxed another notch just knowing she was ready to deal with it.
*And finally, have a good cry once in a while. There is nothing like it to clear the brain.
best wishes,
frank
A lot of great suggestions...
by jenny97 - 2012-04-20 09:04:17
There are a lot of great suggestions here and different approaches work for different people. So I hope you find something (or a few things) here that help you.
A few years ago, when I was about 31, I went to a big teaching hospital for an evaluation for a particular genetic illness. After I went through the testing, the dr. came in and said, "I have good news and bad news. the good news is you don't have the genetic illness we were testing you for. The bad news is you have an aneurysm of the aortic root." He must have seen my shocked and somewhat quizzical look because he went on to explain that I should imagine it like an overfilled balloon. Every time my heart beats, it's like bouncing that overfilled balloon. He told me that it could bounce a few times or many times but eventually it would burst.
Needless to say, I was shocked and devastated. I asked what I could do to prevent the bursting and he told me to avoid stress, not lift anything heavy, and not let my heart rate go above 160. Well, I knew right away I was in trouble because my heart rate goes above 160 just standing up sometimes. And taking a shower, well, forget about it. Not to mention the fact that when I jog it often goes into the 240 range.
A few days later I was taking some friends from a nearby nursing home on a little trip and I was lifting a wheelchair into my car. My heart was beating furiously from the exertion and I became overwhelmed with fear that this activity could cause the end right then and there. Later that week, I spent some time playing with my nephews and they wanted to play chase. My heart started pounding from the exertion and I wondered if that would be the moment. And then I realized, it didn't matter. I mean, I'm going to die sometime and I want to die doing something meaningful, doing things I enjoy, and spending time with the people I love rather than dying sitting on my couch because I'm too afraid to go out and do anything.
I wish you all the best, and many years of good, stable health.
SMILE!
by Hope - 2012-04-20 12:04:26
Hi! I am on my second ICD. Refused disability at first. Was brought up to be responsible and a giver, not a taker. Except for the initial shock of waht happened to me (heart virus), I came to realize not being the contributer/participater I had always been had me down a lot more than my condition and device. You have been through so much and are understandably weary, but you are so ahead also beacause you know how fragile life is and how important it is we do not wait for tomorrow. I have trouble talking about or writing about the following. My 42 year old daughter died last May from cardiac arrest during a severe asthma attack. Her two children, whom I now care, for witnessed their Mother's death. I am trying to help you understand two things, but having trouble getting it across. The first one is we really do never know even when we are in, to our knowledge, the best of health. The other is don't let the here and now slip away to tomorrow. We had all had a lovely evening together the night my daugher died. We had said goodbye only a few hours before my granddaughter desparately called 911 and us. Shannon did manage to utter "I love you" to her children before she went unconscious. I thank God the children have that to take with them on their journey. Please remember to say "I love you" and other kind words as you travel your journey. I don't know why I am here and my daughter is not. In the cycle of life, it should be me. I feel guilty at times I am here, and the children do not have their Mom. Try not to be hard on yourself that you are not exactly the same as before. Do not feel guilty about things you cannot do but do what you can willingly and cheerfully. Believe me, you can find "yourself" in all you are enduring and go for it. Wishing you happy, productive days. Take care. Hopeful Heart
Til DeathDo us Part
by love4deej - 2012-05-09 05:05:48
Hello everyone, my name is Dominic and I have had my ICD going on 2 years in July. I was Active Duty Army training my Soldiers how to properly negotiate rope and obstacle course climbing skills. Something we've done two or three times a week, as I was at the top of the rope I lost consciousness and fell to the ground. I was rushed to the base hospital while recieving CPR, a short while later, I was in the ER, where they continued CPR, I was shocked about 6 times to regain Sinus Rythm and a host of other things, in order to save me. Realizing that I was in Vfib, or Sudden Cardiac Death (SCD), the ER continued CPR for another 40 minutes, until they realized it was me. My wife worked in same ER, and most of my caregivers were my friends (extra care)! Was transported by Lifeflight to the BEST hospital (IN MY OPINION) Vanderbilt University Medical Center,while the in-flight nurse watched me crash just after take off again, continuing CPR even while I was rolleded in to the CATH Lab. There they realized that I had no forseeable heart issues that cause me to go itno SCD, no blockage, no Heart Attack, or anything on the EKG that would indicate abnormal issues. I spent 4 days in a Coma in CVICU, CardioVascular Intensive Care Unit. I was treated with Hypothermic Treatment to help reduce mental damage..not sure it worked..lol no it did! I have no memory of the incident or anything before recieving my ICD. I was released a couple days later and my third daughter was born three days later.
Long story, I know but it's so amazing to share our story, there are other details that I can and will share later. It's nice to have this outlet in which we understand one another.
You know you're wired when...
Your kids call you Cyborg.
Member Quotes
It is just over 10 years since a dual lead device was implanted for complete heart block. It has worked perfectly and I have traveled well near two million miles internationally since then.
fear of dying
by Alma Annie - 2012-04-19 08:04:46
Hi B-Rad,
I am so sorry that you have had all this ill health. We really don't know how much time we have on this earth. In our area a 14 yr. old boy was killed yesterday by slipping on rocks and falling 100 metres down a cliff. I had an uncle with kidney cancer, but 6 months after diagnosis he was killed in a car accident.
I suggest you spend time with your lovely wife laughing. Hire some funny movies and laugh as much as you can. Don't worry so much about the future, leave all the worrying to your cardiologists. They will decide what needs to be done. Try to enjoy your life to the best of your health ability. The fact that you are not on a heart transplant list means that there is no immediate danger. If you do have one then all should be well anyway.
Whatever age we get to in this life is a bonus, so try to enjoy.
Alma Annie