Author Topic: S/O Would this upset you? - Facebook and a long-term convalescence  (Read 3488 times)

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cattlekid

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So I am going to be undergoing a kidney transplant at some point.  It may be planned or it may be something where I have to get in the car and jet unexpectedly. 

Obviously, we are going to let close family members (parents, siblings and grandparents) know that we are on the way via phone and keep them up to speed as much as possible.  But there is only going to be so many people that we are going to be able to keep abreast of things via phone.  It's going to be taxing for DH as he does not keep medical stuff straight and I won't be in much shape at the beginning to have multiple phone conversations. 

After I get home, it will be several weeks before I really will be able to be out and about.  I'd like to use Facebook and CaringBridge as my main methods of communication, because I can post once and then everyone will be able to see it.  However, after reading the comments on the thread "Would this upset you?" I am worried that I will offend other family members and friends by calling them individually and keeping them updated. 

If you had a friend or family member in this situation, would you be willing to visit these sites to keep tabs?

Shoo

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Re: S/O Would this upset you? - Facebook and a long-term convalescence
« Reply #1 on: February 16, 2013, 08:20:39 PM »
Yes, of course!  In fact, that's how I would prefer to stay notified.

Luci45

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Re: S/O Would this upset you? - Facebook and a long-term convalescence
« Reply #2 on: February 16, 2013, 08:45:31 PM »
I'm happy with either a special group on Facebook or being able to check into Caring Bridge. I care enough to do that and am happy they want me to know.

MorgnsGrl

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Re: S/O Would this upset you? - Facebook and a long-term convalescence
« Reply #3 on: February 16, 2013, 08:45:47 PM »
I think what you're suggesting is perfectly reasonable. Could you let family/friends know in advance (via email, or ask your parents to pass it on, etc) that this will be how you'll update everyone on how you are and what's happening, and explain it's because it will be too taxing on your recovery to keep each individual updated personally?

Outdoor Girl

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Re: S/O Would this upset you? - Facebook and a long-term convalescence
« Reply #4 on: February 16, 2013, 08:48:22 PM »
I don't see anything wrong with your plan.  I'm not on Facebook but if I were your friend, i would just get in touch with another friend who was and get the updates from them.  Once you were up to e-mails, I'd communicate with you directly.

Keep your go bag by the door; I hope all goes well for you!
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Sheila Take a Bow

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Re: S/O Would this upset you? - Facebook and a long-term convalescence
« Reply #5 on: February 16, 2013, 09:30:41 PM »
I know someone whose daughter has some serious health problems. She posted something on Facebook asking people who wanted to be included in medical updates to let her know, and she created a private FB group so she could keep everyone up to date.

Good luck. Hopefully you'll hear some good news soon.

Tierrainney

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Re: S/O Would this upset you? - Facebook and a long-term convalescence
« Reply #6 on: February 16, 2013, 09:47:28 PM »
I would keep the gruesome medical details to a minimum. And no pictures of anything medical. Those are some things that can be upsetting to people that are not expecting them. I work in a doctor's office. Blood and guts don't bother me at all. But I would be surprised to see them on a wall on Facebook.

Otherwise I also agree that using Facebook would be a good way to keep friends and family updated with your general health and activities.
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Sharnita

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Re: S/O Would this upset you? - Facebook and a long-term convalescence
« Reply #7 on: February 16, 2013, 09:49:44 PM »
I think that is fine. If people have no idea your health issues are severe enough to require a transplant you might want to call or at least message/email them individually now to let them know it will be happening "sometime in the future". When "sometime" comes sharing updates on fb seems reasonable. For very close family you might want to call if you are up to it. Maybe every other day, once a week, whatever. Maybe call one person each time and have them let the rest of the family know?

Deetee

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Re: S/O Would this upset you? - Facebook and a long-term convalescence
« Reply #8 on: February 16, 2013, 10:52:52 PM »
I think a facebook group is the best way (unless you have a close friends/family only facebook list-then you can do standard facebook updates). People understand that when you have medical issues you have limited time.

kherbert05

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Re: S/O Would this upset you? - Facebook and a long-term convalescence
« Reply #9 on: February 16, 2013, 11:03:07 PM »
I would prefer this. I hate feeling like I'm either neglecting a friend/family member or that I'm intruding on their recovery. In the past we have had one family member outside the immediate household who was the contact person for situations like this. That way the household could concentrate on the sick person

You might want to have a friend or family member set up so s/he can post for you at first.
« Last Edit: February 16, 2013, 11:14:37 PM by kherbert05 »
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Luci45

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Re: S/O Would this upset you? - Facebook and a long-term convalescence
« Reply #10 on: February 16, 2013, 11:16:31 PM »
Another reason a Facebook group or Caring Bridge is better is than having people pass the word to each other is that it is in your or your husband's words rather than being garbled and misinterpreted by a phone tree. That can be a real mess and lead to lots of confusion and misinformation.

sammycat

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Re: S/O Would this upset you? - Facebook and a long-term convalescence
« Reply #11 on: February 16, 2013, 11:17:58 PM »
I think what you're suggesting is perfectly reasonable. Could you let family/friends know in advance (via email, or ask your parents to pass it on, etc) that this will be how you'll update everyone on how you are and what's happening, and explain it's because it will be too taxing on your recovery to keep each individual updated personally?

I agree, and letting friends etc know now that you'll be doing regular facebook updates later on was the first thing that sprung to mind for me too.

As another poster said, I'd prefer to be kept up to date this way. Sometimes a phone call may come at an inconvenient time and the person being called isn't able to give the situation the attention it deserves, but at least with facebook people can keep up to date and/or respond when it suits them. 

Another thing I thought of - if a friend/family member doesn't want to burden you with how upset they are at the latest piece of news, then allowing them to digest it first via facebook would be a kindness of both sides. 

Good luck with your procedure!  :)

wolfie

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Re: S/O Would this upset you? - Facebook and a long-term convalescence
« Reply #12 on: February 17, 2013, 12:12:11 AM »
If you do this you must be okay with people not getting the news. I know I frequently don't see all the posts my friends make so if they were to post something major I might not see it. I would consider it unfair of them to be upset if that was the case.

mmswm

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Re: S/O Would this upset you? - Facebook and a long-term convalescence
« Reply #13 on: February 17, 2013, 01:24:12 AM »
This past summer I told my friends and family that I was overwhelmed and that I would be updating everybody on the surgical status of my boys via Facebook.  Anything else was simply more than I could handle.  I created a group and proceeded as I had announced.  Toward the end of the summer I had the following conversation with my sister:

Sister:  M's ankle surgery was last week?  Why did I not know?
Me: I posted it on Facebook.
Sister: I cannot be counted on to look at Facebook!  I need you to call me!
Me: I have two kids in two different hospitals and a third one tagging along for the ride. If you want to keep up, you have to manage to work around what I can do, and what I can do is post regular updates on a central site.  Anything else is asking too much.

I feel that when it comes to overwhelming health issues, the idea that the sick person should cater to everybody else is ridiculous. Everybody else needs to bend to what the ill person (or that person's caretaker) is able to do.  If what you can do is update on facebook, then that's what you do. Now, I do understand that you might not want to announce to the entire world the ins and outs of your recovery, but that's what groups are for, and I see no reason why you shouldn't be able to take advantage of the available technology to make that aspect of your recovery easier.

And, I do hope you get your kidney soon, and that your recovery goes as well as possible!

Docslady21

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Re: S/O Would this upset you? - Facebook and a long-term convalescence
« Reply #14 on: February 17, 2013, 01:30:23 AM »
So I am going to be undergoing a kidney transplant at some point.  It may be planned or it may be something where I have to get in the car and jet unexpectedly. 

Obviously, we are going to let close family members (parents, siblings and grandparents) know that we are on the way via phone and keep them up to speed as much as possible.  But there is only going to be so many people that we are going to be able to keep abreast of things via phone.  It's going to be taxing for DH as he does not keep medical stuff straight and I won't be in much shape at the beginning to have multiple phone conversations. 

After I get home, it will be several weeks before I really will be able to be out and about.  I'd like to use Facebook and CaringBridge as my main methods of communication, because I can post once and then everyone will be able to see it.  However, after reading the comments on the thread "Would this upset you?" I am worried that I will offend other family members and friends by calling them individually and keeping them updated. 

If you had a friend or family member in this situation, would you be willing to visit these sites to keep tabs?

CaringBridge is AMAZING. Absolutely AMAZING. I followed a loved one's medical journey every day last year. I relayed all info to my non-computer father and friends and it worked really well for everyone involved. The best part was that when we talked, I already knew everything. So instead of her repeating all of the details, we could just chat about regular things--which was so nice for her, not having to live and breathe her problems. =)