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So tired of being tired
It's been seven years with heart failure, LBBB, and device implants. After two ICDs, I got a device "upgrade" on December 22, 2011. I now have a Medtronic Protecta XT - aka a CRT-D, with three leads to control my heart instead of two. Placing that third lead through the coronary sinus was scary and more complicated than I expected, but I believed it would be worth it, since I'd read many stories of people doing so much better with full-time resynchronization pacing instead of just the two-lead ICD. About seven weeks later now, and I'm feeling pretty sorry for myself. 10 hours of sleep, get up, go for a walk, and then feel exhausted. Day after day. Short of breath when I'm sitting around, but not when I'm exercising - which points to anxiety causing it over heart issues. But heart issues cause anxiety. So it still comes down to heart issues. I've lost my brother, my sister and my father to this cardiomyopathy disease, and I guess it's my turn now. We're all terminal, right? I'm thankful that I've had these seven years with my wife and kids - lots of people lose the battle way before that. There's no point to this I guess, just venting how much the fatigue is getting to me. I have thoughts of stopping the 80mg Coreg pill every day -- I suspect that while it keeps me alive, it's also the biggest reason I feel wiped out most of the time. Anyone else tried that?
8 Comments
Thanks
by Marty - 2012-02-07 01:02:50
Don, that was great advice. I was really low when I wrote that post, and your words were right on point. I am seeing a psychiatrist for PTSD, and will continue the fight.
Thanks again.
Hi Marty:)
by Pookie - 2012-02-07 05:02:32
Don gave you invaluable advice. He's a great guy too:)
I know we can all get down and sometimes some of us stay down (meaning depressed) for a very long time for numerous reasons no matter how much help we get, but don't quit seeking and taking the support either.
My father died on September 6th, just 5 months ago yesterday all because he stopped his beta blocker. He was a very sick man, and I think he gave up on life. Obviously. We just got the full autopsy report and it told us things (medically) that obviously he didn't share with us for whatever reason. I don't get through a day without breaking down (bawling my head off) several times a day thinking "if only" he had done this or that he would still be here. So, I'm begging you - for your family - to do everything you can to keep yourself on this earth for as long as you can.
I too was diagnosed with PTSD a few yrs after my horrendous pacemaker events - surgery after sugery, coded twice, long story, but I'm a determined person and very stubborn. But I'll be honest with you, there have been oodles of times I wish I could just die in my sleep, but then I think of what that would do to my husband, my twin sister, and my mother. I also have a slew of other medical ailments, can't work, can't drive, I live in chronic pain, chronic fatigue, I could go on & on, but I guess my point is this: we all have our crosses to bear and some of us get the really big & heavy ones (not fair, not fair) but we have to play with the cards life has dealt us. Surround yourself with a support system of friends and family and try each day to do something that makes YOU happy.
Giving up is not the answer - you know that:) Plus you now have all of us!!!!!!!!
Pookie
One more thing......
by Pookie - 2012-02-07 06:02:33
not that any of us can compare what we each go through, but - if you're interested - have you read the Newsletters? Each one profiles a member and what they have been through and their experiences/thoughts.
I was featured in the Spring 2009 newsletter - if you're interested in reading a bit of my history. I think you can find them under "News" - upper left hand corner.
I was 42 when I got my pacemaker and now I'm dealing with a possible lead fracture - will know more when I go to the PM Clinic this Friday. Yah, I'm worried, but my worrying is getting me nowhere!!!! other than stressed, so I've been trying to keep myself as busy as possible doing things I like to do.
I will be 50 in March and I'm so dam determined that my heart issues and my other medical issues are NOT going to run my life entirely. I too have my good days and my bad days - we all do. Then we have to deal with other factors in our lives too, so I think I understand a bit of what you are going thru.
Just take it each day at a time; it helps:)
Glad to hear that you are getting help for your PTSD, it took me a couple of yrs of therapy and now I'm doing much much better with mine.
Pookie
I can't stop thinking about you!
by Pookie - 2012-02-07 06:02:47
Perhaps you should seek a 2nd opinion. I don't know anything about heart failure & LBBB, but perhaps your profound exhaustion is coming from another issue. I know I was sooooooooo tired for so many years - I remember thinking OMG I was so much better without the pacemaker!!!! In my particular case, and it took years of hounding some of the doctors, but eventually we figured some of it out and now I feel a bit better. With that being said, another thought just hit me: being depressed is infamous for making one feel exhausted. Not that it is any of my business, nor do I expect you to respond, but there are some good anti-depressants meds out there, but then again, some times there are people who don't want to take them and deal with their issues head on.
Have you ever had a sleep study done to see if you have Sleep Apnea? I read (don't remember where) that 60% of pacemaker patients "may" develop this at some point in time after receiving their devices. I had the sleep study done this past May and it revealed that I'm not getting enough restorative sleep.........just a thought that you might wanna explore.
Pookie
Half a century of Experience...
by donr - 2012-02-07 07:02:26
...Just landed on you!
Marty - I did not know Pookie had been through what she has seen. Between the two of us, we represent nearly half a century of experience w/ the stress/exhaustion/PTSD/PM issues. I will second everything she just said.
Especially the Apnea issue. She MAY have seen the 60% correlation between PM's & CPAPS here on this site - I know I wrote it once in a comment. I'm not sure where I read it, but my cardio agreed w/ it when I asked him about it. He had no idea which may have caused the other - or even if the need for concurrent use was caused by some other independent variable. But - if you can swing it, a sleep study can answer many questions if you get a lot of what you think is adequate sleep but still feel run down all the time. I know I could tel the difference after the first night of use.
Really, our stories illustrate once again that you really don't want to trade your troubles for anyone else's!
Cheers!
Don
Thanks
by Marty - 2012-04-09 06:04:10
Elle, thanks for your comments, they reaffirm the great words from Don and Pookie, and I'm glad they resonated with you as well. Those two are awesome people and I admire both of them. :)
About 30 years ago I became an Air Force recruiter, ...went through a really challenging school, and then enjoyed success in that job for about 22 years. The recruiting school used Vince Lombardi's principles for success, and they really haven't changed over the years. His concepts (along with my wife and faith in God) have sustained me, even when I get feeling completely sorry for myself. Here are the ones that make a lot of sense in the context we're discussing:
The Coach's ingredients for success at FOOTBALL include direct applications for those of us fighting heart problems:
1. Mental Toughness. (Keep learning, stay positive!)
2. Control the ball. (Control the things you CAN)
3. Fatigue makes cowards of us all. (It's like that for all of us, so don't be too hard on yourself...sigh...)
4. Operate on Lombardi time. (Don't procrastinate-be early)
5. Make that second effort. (No matter how you feel--use your brain!)
Hope all goes smoothly with your CRT implant and your ongoing therapy to press the fog and despair back!
Keep us updated, and thanks again.
God bless.
Marty
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Encouragement
by elle415 - 2012-04-09 11:04:35
I am new to this site. I have had CHF w/EF#13 for 12 years. When you are constantly tired and can do nothing, I know from fact that it wears your mind and body out. Like carrying a heavy rock up an endless hill. It cannot be explained the "fatigue" of heart failure. I don't know Pookie or Don, but what they said sure made sense. I also suffer from genetic depression. Add that to the pot. Omigod! You literally can not think normally. I thought I was the only person that felt like this, although logically I knew better. I finally got the great effort to go out and see a therapist. I didn't want to be sick AND A MENTAL!! But I did. Now I'm on a good course of meds and can think outside the fog of despair. I'm having a CRT-ICD later this month. I have tremendous faith it will do SOMETHING. And I have that sense of up-liftedness because my mind is not clogged. Don and Pookie had truthful, wonderful words. They wrote to help you and wound up making me feel cared for and optomistic. I'm thinking a lot about you. Let's all try to get better TOGETHER! Thank you for reading --------Elle
You know you're wired when...
You have a shocking personality.
Member Quotes
My pacemaker was installed in 1998 and I have not felt better. The mental part is the toughest.
Marty, Marty, Marty...
by donr - 2012-02-06 05:02:03
...sounds like it's starting to get to you. At least you are rationally examining your PHYSICAL situation & coming up w/ the BIG A!
A lot of people NEVER get to that point in capability.
Your last couple sentences , starting w/ "There's no point to this, I guess..." tell me that depression is starting to creep in & peek at you from behind the brush! Don't feel bad about that - it is a common problem that heart problem folks face. And - you analyzed it correctly when you opined that heart conditions cause anxiety! Another good sign. A further good sign that you are not resigned to this as a fate is that you came here to ask for help!!!!! So many folks NEVER ask for help - they just let go of the gunwale of the lifeboat & slip silently into a sea of despair w/o anyone knowing they are gone.
So much for the salve being smeared on. Where do you go from here? Where do YOU want to go? I once had a woman tell me - "You cannot want something for someone else!" Oh, how true! But, again, where do YOU want to go? We can help you a) decide that & b) help YOU find your way there. No guarantees, but at least we can try.
Do you want a professional to talk to? Perhaps one who specializes in heart patients w/ anxiety issues? Betcha we can help you find one! They are out there. One thing I will tell you NOT to do. NEVER make a decision while you are fatigued out of your mind & disgusted w/ what is happening around you. It will probably be wrong!
Dunno about the COREG pill - but DON"T stop it w/o clearing it w/ the Dr. It literally may be what keeps you alive. And you need to stay alive for your wife & kids. The greatest motivation for you to live is to visualize them after your funeral. You think YOU are in a state of despair - HA! absolutely nothing compared to their state - and they will be that way for a long, long time. At least you have a chance to get out of the hole you are in - they would have none because you are not there to help them.
Have you talked to Wife about this situation, rationally? Telling her you want and need help? Then exploring some means of getting it - together. This is something not to fight alone.
The best to you.
Don