Update List? What's the best way?...

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almost_hectic

almost_hectic

Well-known member
Joined
Jun 30, 2015
Messages
779
Location
naples, florida
Okay so my AVR is next Tuesday and I'm getting encouragement and well wishes from friends and such, which is great. But they all want to be updated when I'm out of surgery and such. Don't get me wrong I'm happy to have people concerned but updating everyone is likely not to be high on my priorities when I come out of surgery. So what's the best way to do this? Multiple phone calls, email list, text messages? Not sure?... How have others done this? Maybe it's a personal flaw but I get really uncomfortable when people gush over me with sympathy. So having to answer the whole how are you feeling question a hundred times or so seems daunting. Especially since I imagine I'm still going to be largely out of sorts and very tired or drugged. Am I being selfish for thinking that way?
 
Not selfish at all. Your first priority is your recovery. I will have family there to do the communicating but I'll provide my son or daughter with a list of phone numbers to send a bulk text whenever I'm out of surgery. I've done group emails in this journey after tests and doctor appointments because I was too drained emotionally and physically to talk with people individually and repeat the story over and over. I've also used FaceBook a couple of times. I'll personally send another group text when I'm home then that will be it.

I'll be sending positive thoughts your way on Tuesday. Of course let US know here on the forum when able.

Michele
 
I had my husband put updates on Facebook under my name, which worked very well. You could also set up a caringbridge or lotsa helping hands site.
 
You definittyly need someone to do this for you. You are not selfish - you have to concentrate on recovery. I had my husband tell all our friends and relatives how things were.. I know it was quite a job for him to do as they were all phoning and emailing asking him questions etc. He also dealt with all my email friends. I didn't have to do any of this. When I was got home I got so many cards and presents and flowers sent - it was like having a birthday ! It was actually truly lovely knowing how much our friends cared. I was still not in a state to thank everyone right away. My husband contacted them and kept them up to date. I have kept all the cards I was sent as a positive memento of the 'journey'.
 
Thank you Michele, thank you ladies. I don't want to appear as a jerk or ungrateful for people's concern. But I don't really know how to deal with pleasing people in this situation. I am not on Facebook, never have been never will. I suppose I could direct people to my Twitter and send out periodic updates that way. Heck I could even make a separate account just for that purpose I suppose. Seems rather impersonal though. Maybe I'll try a group text my folks can send out from my phone.

In these weeks leading up to my surgery friends and coworkers have been "supportive" even though so many just say the wrong things without thinking what's comin out of their mouths. I know it's not meant to be bad, but people just seem really boneheaded when they react to my news and say things like "holy ****, that's scary" or "oh my God they're gonna cut you open!" I know they have no idea how that comes across to me. It doesn't help me focus and be in the mindset I need to be. So I don't want to invite people to say more stupid stuff is part of my concern... Maybe I need better friends, coworkers, and neighbors.
 
I know people who use caringbridge website for updates and really like it for updating a lot of those friends and wider family that cannot easily get updated by those closest to you .... Someone close to you can do the single updates to caringbridge and then everyone else can see. Good luck with the procedure.
 
I used VR.org for my personal support group - this is the place i came to find out all the specifics, what to expect, to ask questions that my friends and family and coworkers didn't need to know about. I used Adam Pick's website, http://www.heart-valve-surgery.com to post updates and fluff journals. My friends and family and coworkers could subscribe to it, or just read it if the felt like it. That was everyone had access to the latest news. My husband posted for me the day of surgery and the day after, then I took it back after that. People can read the updates and send messages. Once I set up the journal, I sent everyone an invitation, and told them they could also forward it to anyone they wanted to. There's no privacy to it at all, so I really filtered it to the most superficial details and facts - "This is what happened, this is how I'm feeling, this is what's next."
I'm like you - I didn't want to be bothered with calls and texts, and most of all - no hospital visits unless invited by me!

here's my journal - http://www.heart-valve-surgery.com/journals/user/meredithbray

Good luck!
 
I used VR.org for my personal support group - this is the place i came to find out all the specifics, what to expect, to ask questions that my friends and family and coworkers didn't need to know about. I used Adam Pick's website, http://www.heart-valve-surgery.com to post updates and fluff journals. My friends and family and coworkers could subscribe to it, or just read it if the felt like it. That was everyone had access to the latest news. My husband posted for me the day of surgery and the day after, then I took it back after that. People can read the updates and send messages. Once I set up the journal, I sent everyone an invitation, and told them they could also forward it to anyone they wanted to. There's no privacy to it at all, so I really filtered it to the most superficial details and facts - "This is what happened, this is how I'm feeling, this is what's next."
I'm like you - I didn't want to be bothered with calls and texts, and most of all - no hospital visits unless invited by me!

here's my journal - http://www.heart-valve-surgery.com/journals/user/meredithbray

Good luck!
 
Here is an article I LOVE on people who say unhelpful stuff. The people around you are to comfort YOU, not vice versa. I love the circle diagram that goes with this article. Comfort IN, concern OUT, with you in the center.

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

If i recall we're about the same age - 40s? so your friends may have little experience of how to properly support someone around health stuff rather than really being jerks. : ) Seniors are better at it.

As others have said you need a "press secretary" to control your interactions with your adoring public so you can heal in peace - I bet you know who in your circle of friends or family would be all over this. Caringbridge is great for her/him to get the word out about your status and give concerned folks ideas on how to show caring in ways you will appreciate. (want visits or not , want meals or not, want cards or flowers etc). She/he could also set up a signup genius if you need anybody to pitch in for meals, rides, sit home with you, do errands, etc. My super-organized friend Brenda did this for me when my twins and I were very sick. It's good to have a central person someone can contact instead of you. And it IS good to feel cared for in non-intrusive ways.

Keep your boundaries! You're the patient here.



​
 
Here is an article I LOVE on people who say unhelpful stuff. The people around you are to comfort YOU, not vice versa. I love the circle diagram that goes with this article. Comfort IN, concern OUT, with you in the center.

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

If i recall we're about the same age - 40s? so your friends may have little experience of how to properly support someone around health stuff rather than really being jerks. : ) Seniors are better at it.

As others have said you need a "press secretary" to control your interactions with your adoring public so you can heal in peace - I bet you know who in your circle of friends or family would be all over this. Caringbridge is great for her/him to get the word out about your status and give concerned folks ideas on how to show caring in ways you will appreciate. (want visits or not , want meals or not, want cards or flowers etc). She/he could also set up a signup genius if you need anybody to pitch in for meals, rides, sit home with you, do errands, etc. My super-organized friend Brenda did this for me when my twins and I were very sick. It's good to have a central person someone can contact instead of you. And it IS good to feel cared for in non-intrusive ways.

Keep your boundaries! You're the patient here.



​
 
OMG that article is so to the point accurate. Yeah people have said the dumbest stuff to me. Or wanted to share a story about somone else heart trouble and how awful it was for them. I mean when it happens I am just in complete shock! I say nothing and just look at them and honestly cannot believe they felt compelled to tell me that story. How on earth does that help me or why would you think I would want to know how horrible your aunts experience was?!! My mom has experienced the same thing. Everyone hears and wants to share their story with her, or questions why Im having surgery where I am instead of locally? Its insane and really makes you want to withdraw from people all together and have no interactions. But then you feel really alone.
 
Well the third path is to tell people how that makes you feel. "Wow, that's not really helping me." And have a conversation from there to guide them to do better. I have a son on autism spectrum so I'm used to being blunt. Maybe email the article to some folks. ; ) Sometimes directness is the way to go. If they're offended, they can have heart surgery.
 
My son is on the autistic spectrum too so I too am used to (trying) to tell people how it really is when they plainly don't understand. But following heart surgery I certainly wasn't in that strong frame of mind. I think it's pretty important to have a secretary to let people know how you are so you don't have to deal with that until you're feeling up to it. I remember now, one set of friends did the right thing when I was discharged and came to visit with some home made soup for me - that was also helpful and caring for dh who was very busy looking after me, son and the house.
 
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