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Kidney Transplants and the Donor Families.

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posted on Jul, 25 2017 @ 02:05 PM
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Evening ATS.
After 28 months of Dialysis my Stepdaughter received a Kidney last week.
She is doing remarkably well, even sitting up in bed within 24 hours of the Op.
Its a wonderful thing to see a Child change so much in such a short space of time.
As overjoyed as we all are, it would be easy to lose sight of the fact that a Family has lost someone to enable Her good health.
While Mum is in Hospital with Her, I've been delegated to open lines of communication with the Donor Family via the Transplant Coordinators.
I'll throw this out to the ATS community as I have no idea about the protocol.
Yes, we'll be managed by the NHS but will the Family want to know?
Will our off thanks help their greiving?
A very emotional time so I welcome any wise words.
Thanks.
edit on 25-7-2017 by Cymru because: (no reason given)

edit on 25-7-2017 by Cymru because: (no reason given)




posted on Jul, 25 2017 @ 02:20 PM
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a reply to: CymruMy friend is in to year 5 after a kidney transplant, and doing well and is 64 years old.



posted on Jul, 25 2017 @ 02:21 PM
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a reply to: Cymru

I'm glad she received the care she needed. That is wonderful!!

I know very well how incredibly stressful it is waiting for an organ transplant here in the good ol' USA. (Which really sucks right now.)

I would say that expressing your gratitude and letting them know they've given a child a new lease on life would be the best approach. If your Stepdaughter is able, perhaps a note from her too, with how much better she feels and how she will never forget the kindness of the family for giving that last gift.

Really, I would think that would be the best way to manage it - I know that's what I would want to say if my son is ever able to get what he needs here.

peace,

AB



posted on Jul, 25 2017 @ 02:22 PM
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a reply to: Cymru


The fact that they lost a loved one and saved you from losing yours? Yea, you are helping them with their grief by telling them how thankful your family is.



posted on Jul, 25 2017 @ 02:31 PM
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a reply to: seeker1963

This is the point. We were on sleep away from losing Her at the start of this.
Vasculitis is evil.
Even though we've been through the mill in recent years I have no idea how to approach the Donor Family.
Yes there is a specialist Team to go through but I'm more concerned with the Human aspect. Will they want to know etc.
Hence asking the question outside of the Medical Community.



posted on Jul, 25 2017 @ 02:36 PM
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a reply to: AboveBoard

Thanks AB. We feel for you going through this.
Most Families will never know how much this puts your lives on hold.
I hope your little Man gets "the phonecall" soon.
In some weird way I managed to give something back. I was chatting to a Parent in the coffee room who has been doing the same as us for about the same time.
She asked what we were in for and burst into tears when I told Her.
She was having one of those bad days but my Family agreed to chat with her even with Nipper only out of the Op for 24 hours.
Lots of tears and hugs but it gave Her hope for Her Son.



posted on Jul, 25 2017 @ 03:29 PM
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a reply to: Cymru

It is amazing to hang out in children's hospital units. We parents have "that look" - sleep deprived, somewhat disheveled and a hint of deer-eyed trauma about the eyes, and a grim set of determination to the mouth. It's either that or overt relief (good days) or devastation (the worst days). It's all about endurance.

You did a good thing talking to that poor Mom. It does give hope to hear how other's can make it through. I've done that myself, and it feels good.

My boy is on the list but holding steady on meds for now. It will be a while before they call him, so we are concentrating on living life as fully as he is able to right now. We've been trapped at home, or within a 2 hour radius of the hospital, for a year and a half, and his most recent test showed a bit of stability I wasn't expecting, and the Docs said he was able to travel some. We're going to go visit his grandad in another state. I'm very excited about that. My dad is too old to travel now, so we never know how much time we'll have with him.

So we are in a temporary "good spot" with the inevitable hanging like a shadow in the background. I would give anything to have some kind of true universal health care. If we lose insurance, he will no longer be able to be on the transplant list. There will be no call when he needs it. It will also be extremely difficult to just do the meds he needs, as well as general care. I am wondering if some other kind and generous country might take us in if it comes to that, but its a lot to ask, no?

I'm so sad about even having to think in those terms.

Blessings to you, and to your girl. Sending thoughts and prayers across the sea...

- AB
edit on 25-7-2017 by AboveBoard because: (no reason given)



posted on Jul, 25 2017 @ 04:00 PM
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My mother passed away a few years back and she was an organ donor. We received a list of what she donated and it made me feel good. I would love if one of them wrote our family, as my mother would have been glad to help.



posted on Jul, 25 2017 @ 04:35 PM
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a reply to: Cymru

I had a sister who passed back in the early 80's. There was no communication between the families at that time. However, when my mother rec'd a letter that my sisters kidneys and corneas were successfully transplanted it did give her some modicum of solace.



posted on Jul, 25 2017 @ 05:27 PM
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a reply to: Cymru

Congratulations to your daughter! In my experience, the families do indeed receive great comfort knowing that their lost family member is living on, giving another person a real chance at a healthy, happy life. Most transplant patients I know keep in touch with their donor families, and it seems to be mutually beneficial. If it's encouraged, why not just send a friendly message asking how they feel about it? You don't have to give details about which organ it was or about your daughter. Let them decide if they want you to reveal that specific information. Good luck, and Bright Blessings to you and your family.



posted on Jul, 25 2017 @ 05:55 PM
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a reply to: 5ofineed5aladder

Bless you and your Mum x



posted on Jul, 25 2017 @ 05:58 PM
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a reply to: TobyFlenderson

Bless you.



posted on Jul, 25 2017 @ 08:23 PM
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You are in my heart tonight. Sending best wishes and positive thoughts for you and yours.



posted on Jul, 25 2017 @ 10:35 PM
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Thanks for sharing your last message in the thread about donations. We've never went through meeting the families as of yet, though it is in our thoughts, always as are they. It's wasn't as customary more so as it is now to meet up. I'm glad things have changed were meet ups are more common now.

I believe it would be a wonderful gift to contact them. I hope that can go smoothly for you all and you find more information about a meet up. I figure start with the procurement organization that was initially helping the family with this.



posted on Jul, 27 2017 @ 08:16 AM
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a reply to: dreamingawake

I've been tasked with opening lines of communication during the next month or so of recovery. Made an appointment with the Transplant Coordinator.
I'll post an update soon.



posted on Jul, 27 2017 @ 01:53 PM
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a reply to: dreamingawake

One of the Team is visiting the Family on Monday.
She'll take a letter but struggling with what to write.
Called in a favour from a Friend who is far more adept at such things.
Hopefully we can give them some solace.
edit on 27-7-2017 by Cymru because: (no reason given)



posted on Jul, 28 2017 @ 12:44 AM
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originally posted by: Cymru
a reply to: dreamingawake

One of the Team is visiting the Family on Monday.
She'll take a letter but struggling with what to write.
Called in a favour from a Friend who is far more adept at such things.
Hopefully we can give them some solace.


Sounds like you're doing good, give yourself time and I'm sure it will be a great letter. Awesome to hear, thanks for the update.



posted on Jul, 31 2017 @ 10:26 AM
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a reply to: dreamingawake

Quick update, Shes likely to be discharged tomorrow lunchtime.

6 to 8 weeks of isolation at home but it's not much to ask.



posted on Jul, 31 2017 @ 07:29 PM
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a reply to: Cymru

So happy for you! Happy thoughts and positive vibes for her and your family.



posted on Jul, 31 2017 @ 08:07 PM
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I am glad to hear your step daughter is doing better. I look forward to hearing about the full life she will have now.
As someone who got the call from Donor Services within an hour of losing a loved one maybe I can help ease your mind.

I get invited annually to the recipients picnic.
The thought a kid or someone really sick is alive or healed because of my loved one is such a gift.
We DO all pass away so why not help those that are here after we are gone.
I encourage people to look into nominating themselves as donors and talking through your wishes with your family.

I don't think the family of donors feel anger or jealousy that someone else has a piece of their loved one in them.
I think most of us feel pride and it keeps our love for them alive by remembering what they did.

Yes they are really sad and your sensitivity to their grief is a good thing, but they would still be grieving whether or not your child is healing.
I trust your donor family will be proud to hear the ease of suffering their beautiful family member gifted your child and will appreciate your gratitude for their gift.


edit on 31-7-2017 by spacedoubt because: (no reason given)



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