family support

Support

by AgentX86 - 2018-07-15 09:12:20

From a phisiological/mechanical (why/what) viewpoint, this is a pretty good read.  I see a lot of others on Amazon but haven't read them so can't recommend. You migh highlight the chapters that are relevant to your situation.

<https://www.amazon.com/Pacemaker-Cardiologists-Guide-Patients-Providers-ebook/dp/B00CQB22W0/ref=sr_1_3?ie=UTF8&qid=1531656468&sr=8-3&keywords=pacemaker+book>

Not too much for family

by Theknotguy - 2018-07-15 11:31:06

Not too much for the family here but if you can't get them to read the posts it doesn't help anyway.  Very frustrating.  But it's like trying to learn the card game of bridge with two people who want to argue techniques.  Interesting for them but boring for everyone else.  

I don't know of any way to explain how to someone what it feels like to have the pacemaker implant under your skin.  I've been able to get two people to reach out and touch my implant but everyone else shies away.  Just too weird for them to accept.  So I add the information I can to conversations and leave it go at that.

Attended Wounded Hearts meetings but it turned into a "My dog's bigger than your dog." conversation.  If you hadn't had bypass surgery they didn't feel you had heart problems worthy of their consideration.  It was hard talking to the back of people's heads.  So I quit going.  

I volunteer at the hospital where I got my pacemaker and on the heart floor where I was a patient.  You'd think the nurses would be interested in the on-going treatment of heart problems with a pacemaker but they aren't interested either.  Although, in the hospital, the nurses have to be careful not to get into "practicing medicine" - a very serious charge.  They have to concentrate on treatment and leave the practicing up to the doctors.  

The most support I've gotten is from this forum with lots of good insights into how to get along with your pacemaker.  At least when I'm corresponding with someone here I know they've got a pacemaker or ICD and have first hand knowledge of what's going on.  

But you bring up a good point.  Should there be a forum for family members of those who have pacemakers, ICD's, and the like?
 

Family

by Grateful Heart - 2018-07-15 17:08:35

The book that Agent recommends looks like it would be helpful.

I decided to learn as much as I can about my condition and device and then explain it to my family to ease their minds (and mine).  BTW, still learning new things about my device on a regular basis.

If they have specific questions....ask it here.  Someone will chime in.

Grateful Heart 

Family Support

by ellenmary - 2018-07-15 18:21:24

Thank you all! Great support and suggestions from all 3 of you!  I have found this forum to be of the utmost help in many areas.  I am very grateful for both my pacemaker and for this website.  I have a minor anxiety disorder, and my episode of cardiac arrest in 2017 threw me more than my breast cancer diagnosis did 4 years ago.  I have been fortunate to survive both and do not take that lightly.  I am a licensed professional counselor with a background in facilitating support groups. But sometimes I am very scared about things that seem random or illogical to my family. I have ordered the recommended book and will see what happens.  All I can do is read, ask, learn, explain, and hope for the best as far as understanding. In the end, it is my journey. Thank you again!

families

by Tracey_E - 2018-07-15 20:29:35

St Judes website has some great animations that explain the mechanics

https://www.sjm.com/en/patients/arrhythmias/treatment-options/bradycardia-treatment

As for families, they are going to worry and there isn't much we can do about it. We'd do the same for them, right? People follow our leads so the best thing we can do is show them we are ok. Once they see us getting back to our lives, when they see us not making a big deal of it and feeling good, they will likely back off. 

families

by The real Patch - 2018-07-16 15:06:23

this is hardest on families as all they can do is stand by our side anbd not really understand what we are feeling and going through. I would suggest you learn what you can and then sit down with family and discuss it and answer theiur questions. Be open and honest about what you are going through, that's the best source for them...you

Understanding is where you find it

by Gotrhythm - 2018-07-16 17:31:38

There's a saying I first heard at Alanon: You can't expect to get bread from a hardware store.

Most people never think about their heart stopping, and can't imagine what they would think and feel if it did. Indeed they are rarely aware of their hearts at all except in the most abstract ways--like what things are "good" or "bad" for the heart. Worrying about one's heart stopping? Well, they would say, that's silly, or fruitless, or a waste of time. If they are unkind they might say that's stupid, or idiotic, or crazy.

I don't wish to be negative but I doubt if there are enough words in any book in any language to make them understand feelings that to them have no basis in any reality that they can relate to.

Not feeling understood is frustrating and lonely. As others have suggested, look for understanding from people who have understanding to give.

P.S.

by Gotrhythm - 2018-07-16 17:37:26

Although there is no "family support" section, family members can and do post questions regarding pacemakers.

If your family has questions which you can't answer to their satisfaction, you could suggest they post them here.

Family Support

by ellenmary - 2018-07-16 20:47:53

Again, thanks to all of you who have taken the time to answer and give advice/opinions.  I do understand the concept of "not getting bread from a hardware store" and not expecting to get things from people that they are unable/unwilling to give. While I don't want or need anyone to feed into my anxieties, sometimes I would appreciate a little bit of worry or some questions. I have talked about this website to everyone, but I am pretty sure that no one has checked it out. It seems that life is supposed to just get back to normal, when the normal has been affected. I have been able to talk openly with those who matter, there are some days that are more difficult than others, but I believe that I am coping well in general.  My gratitude for being saved after complete heart block is what keeps me going most of the time. I keep busy with volunteer work, walking, gardening when the weather permits, and playing drums in a rock band (yeah, rock on!) Life in general is good, just scary at times in ways that I didn't experience before.  But then again, life is scary for most people at some point. While I have appreciated all the replies, we can move on to other topics now.  Thank you all SO much!   :)

Uh, Guys (Male AND Female type)...

by donr - 2018-07-18 01:08:47

...the author of the book is Jeff Williams, a Boad Certified EP at the Heart Rhythm Society,

He has been here & commented on a post some weeks back.   Had to do w/ PVC's.  He has written TWO books,  both oriented toward just this situation.  I have copies of both books, but have only been able to flip through them to see what they are like - My first impression is good - they are just technical enough that they can answer questions we ask and are capable of understanding.  They are essentially written for physicians to read and use in counselling their patients - something we have all commented on in the past - lack of patient education.  The books are about half an inch thick & cover nearly every aspect of a PM, from the initial diagnoses, through implant, to after effects.  Read & undersdtand these & there is no need for the Club! 

I cannot read them yet because Ihave lost a significant part of my vision in the last month to Macular Degeneration.  The smalleat typeface I can read is  about 24 point & most books are printed in about 12 point.  Through my left eye I cannot see the back end of a semi at 200 yards.  I found a "low Vision" specialist who is making me a pair of "Telescope glasses" that will give me enough magnification to read again & use my computer at lower typeface size.  If any of you have this problem & are interested in help, send me a Pvt Msg & I'll tell you more.

Donr

family support

by ellenmary - 2018-07-23 12:04:11

Thanks for recommending the books that someone had mentioned. I am ordering at least one of them. I am sorry about your MD.  I take my AREDS Preservision and hope that mine doesn't progress.  Best of luck with everything!