New to This

After having typed out a very long story of how I arrived here, I wondered who would want to read it. In an attempt to find somes peace with everything, here's my shortest version.

CHF brought on by Coxsackievirus B. A friend pointed out this is the same as Barbara Hershey's character in the movie Beaches. That's uplifting!

EF initially 10%. It improved to about 20% within the three months I wore an external defibrillator.

Fast forward a couple of weeks ago, I received a CRT-D implant with three leads, right ventricle and atrium, and left ventricle. I was told there was a fairly good immediate response. Something to do with narrowing of passage ways. I was pretty drugged up and in the age of Covid 19, having someone coherent and present at all times to later decipher things has not always  been an option.

I'm 44 and fortunately never really had any major health issues. What I read online does not paint the prettiest picture. 

I am looking forward to my next doctor's appointments (there are several). With the state of the world, it seems much of what I am experiencing is very routine to everyone else. 

No big deal. Is it a big deal? Is this routine everyone seems to be following where I should find encouragement that life will be long and normal? 

The thoughts that enter my mind! I've never been so scattered. I feel incredibly dramatic! Meanwhile, physically, my left side aches and it is as if I have altitude sickness most of the day. I do have more energy than I did before the implant.

Words of advice or encouragement? ...or maybe even a harsh reality?

 


4 Comments

Life can be long and normal

by Grateful Heart - 2020-05-27 22:18:21

I was diagnosed with cardiomyopathy, LBBB, SSS in 2008.  Like you, I was scared.  I thought I was doomed.  I didn't know anyone who had a CRT-D or pacemaker and I didn't know about this site.  I thought only older people had a pacemaker.  I was 50 yrs. old at the time.   

I started to exercise, eat right and work on my health.  In time my heart was no longer enlarged and my EF increased from 24% to 55%.    I'm on my 2nd CRT-D now.  The first one lasted 10 years. 

You already have more energy so that is great news.  Not everyone sees improvement.

Acceptance and learning about your condition and device is key.

I hope I eased your mind some.

Grateful Heart

Thank you Grateful Heart

by Christopher - 2020-05-27 23:12:12

I've been on the edge of my seat for this message. As a general rule, I do not subscribe to social media. Years ago I deleted my FB, Twitter, and other accounts. Because of my recent health issues, I've been contemplating signing back up to look for discussion boards. I am not well versed in all of this and know that I'm probably overthinking many things. I very much appreciate your response and encouragement. And yes, you have eased my mind some. Thank you. Thank you. Thank you.

Have confidence

by Gemita - 2020-05-28 08:02:01

Hi Christopher,

I find it very helpful to write things down just as you have done.  Putting thoughts on paper helps me to sort through the confusion and assess what is important and what to leave behind.  I don’t always find social media helpful because we are so individual with completely different health conditions and what may suit one person will just not suit another.   Having said this, there are some very good groups to join and they help us to learn about our condition and the different treatments available.  Doctors in my experience have so little time to answer all our questions in the short time available, so unless we come to a group like this, we are left with many questions unanswered and this can lead to anxious thoughts.

My heart is pretty sound in that I do not have any structural problems but I do have lots of electrical faults which can make my heart beat too fast, too slow or irregularly.  Before my pacemaker I was experiencing fainting episodes, long pauses and my heart rate was bouncing from one extreme to another.  As you can imagine I often felt very unstable.  Since having my pacemaker my difficulties have eased considerably and my quality of life is much improved.

In your case, I realise that you have a completely different condition and that your heart is weak and you need help.  Cardiac Resynchronisation Therapy (CRT) can make such a difference and I hope this will be the case for you.  The fact that you were told there was a fairly good immediate response is a very good sign and hopefully this will continue into the future.

I would encourage you to have lots of hope.  At 44 you have much ahead of you and that is to your advantage.  Build your strength up slowly and be kind to yourself, but don’t be afraid.  Fear is negative and won’t help you at all.  It is important that you have confidence and trust in your treating doctors and that you can share with them your concerns.  There is so much they can do to help today with treatments to keep you well for many years.  Good luck Christopher

Thank you Gemita

by Christopher - 2020-05-28 11:03:55

Thank you Gemita,

I very much appreciate the response. While our conditions may vary, I am finding this site to be a better resource than others I've come across. Being able to read experiences others have had is oddly comforting.

It's a bit surreal. Only six months ago, I was on back to back trips; Central America to Europe then back to the States for work. Prior to that, I had been traveling for leisure in South America. There is so much of the world I've yet to see.

Now, with this implant I'm uncertain what that looks like. I have always been a person who goes off the beaten path. One of my cardiologists (yes, there are multiple now) says I should not travel anywhere without easy access to advanced medicine.

Since my diagnosis, I've not worked much. I return next week. Fortunately, I can pretty much work from anywhere in the world. In our current age, having work is certainly not something I should take for granted.

Despite my drama of late, I've always been fairly pragmatic. Then again, I've really had a pretty easy life. I keep telling myself it is normal to have reservations yet the fact is, one must always push forward.

Not that I wish anything like this upon anyone else, but it is reassuring that others are here and they understand. On the other side of the mechanics is the emotional aspect. That realization and acceptance that I am human. Ha! In all seriousness, I find it difficult to convey my concerns to those around me.

I can drone on for days. Already this has been the place for support I was hoping to find.

Best to you and yours,

Christopher

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