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peggysue2

(10,840 posts)
Wed Aug 30, 2023, 10:49 AM Aug 2023

Turns Out I Jumped the Gun on Cassandra

The 'perfect match' liver was rejected by the surgeons. Ms.Toad reminded me of the possibility last night. I knew this, too, after my brother-in-law's transplant experience--a perfect match (tissue match) does not equate to the quality or 'perfect match' aspects of the individual organ. The final determination was made by the baby girl's lead surgeon. We were all caught up in the elation of the moment but failed to ask the pertinent question.

Live and learn.

Disappointing? Yes. My son and his wife texted around 3 am thoroughly bummed out.

This surgery will happen; we just need to wait a bit longer.

Thanks for all the kind words and support.

I'll keep the DU family updated.

36 replies = new reply since forum marked as read
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Turns Out I Jumped the Gun on Cassandra (Original Post) peggysue2 Aug 2023 OP
🫶🏽 blm Aug 2023 #1
Stay strong, Peggysue. sheshe2 Aug 2023 #2
I'm trying, sheshe peggysue2 Aug 2023 #9
yeah, "perfect match" can sometimes still mean issues 4lbs Aug 2023 #3
I could kick myself because . . . peggysue2 Aug 2023 #10
Holding you all in light and love. Your DU family is here for you. Lean as hard as niyad Aug 2023 #4
Thanks for that, niyad peggysue2 Aug 2023 #11
Please, people....Update your donor documentation and tell EVERYONE of your wishes! Thunderbeast Aug 2023 #5
That's a good idea. calimary Aug 2023 #8
Since I am into recycling, harvest everything that is reusable, crisp the rest, niyad Aug 2023 #25
An important reminder, thunderbeast peggysue2 Aug 2023 #12
And - the criteria for organ donation is different from blood donation - Ms. Toad Aug 2023 #36
I signed my first donor card about 50 years ago. My driver's license has a little pink dot that ... Hekate Aug 2023 #24
Same here! niyad Aug 2023 #26
So sorry to hear of the complication. What a roller coaster your family is on. Fla Dem Aug 2023 #6
Most definitely, Fla Dem peggysue2 Aug 2023 #14
Damn!!! Karadeniz Aug 2023 #7
That was pretty much my reaction, Karadeniz peggysue2 Aug 2023 #15
Not sure how I would handle that stress. LiberalFighter Aug 2023 #13
I don't know how my son and his wife manage the anxiety. Sometimes they simply don't. peggysue2 Aug 2023 #19
I am sorry about the lack of a liver match LetMyPeopleVote Aug 2023 #16
Thanks, LetMyPeopleVote peggysue2 Aug 2023 #20
Hang in there. Sending hopeful vibes. Evolve Dammit Aug 2023 #17
We're hanging and . . . peggysue2 Aug 2023 #21
Love ya Evolve Dammit Aug 2023 #29
This is got to be tough for all of you. pandr32 Aug 2023 #18
Thanks for that hug, pandr32 peggysue2 Aug 2023 #22
Waiting is so hard! Esp. when you don't know where that end point is. CaliforniaPeggy Aug 2023 #23
Awwww. Thank you, Peggy peggysue2 Aug 2023 #30
I had a friend who was waiting for a liver transplant milestogo Aug 2023 #27
Five times! Oh, no. peggysue2 Aug 2023 #31
I guess there are a lot of people going through this at any given time milestogo Aug 2023 #34
Sorry to hear this PeggySue.. Cha Aug 2023 #28
Ahhhh, thanks Cha peggysue2 Aug 2023 #32
💚🕯️🕊️🙏💕 Cha Aug 2023 #33
I'm so sorry to hear it didn't work out this time - Ms. Toad Aug 2023 #35

4lbs

(6,865 posts)
3. yeah, "perfect match" can sometimes still mean issues
Wed Aug 30, 2023, 11:32 AM
Aug 2023

There can be problems with the organ during retrieval, and that "perfect match" goes away.

The organ might be damaged or become damaged and unviable when still in the host

The recipient may still reject the organ even after implantation and anti-rejection drugs are administered.

peggysue2

(10,840 posts)
10. I could kick myself because . . .
Wed Aug 30, 2023, 11:57 AM
Aug 2023

My brother-in-law had the same experience with his lung transplant. Guess I buried that detail in all the excitement.

But you're right. The perfect match is only perfect once the surgeon gives the final nod. We don't know the 'why' in this instance but the surgeon was not satisfied.

And so . . . we await the next call.

Bummer.

peggysue2

(10,840 posts)
11. Thanks for that, niyad
Wed Aug 30, 2023, 12:00 PM
Aug 2023

I've been leaning pretty hard. On everyone. Which is not my habit but this child just rips my heart.

Appreciate it.

calimary

(81,500 posts)
8. That's a good idea.
Wed Aug 30, 2023, 11:47 AM
Aug 2023

I want to be “picked clean.” Take everything, anything that might be useful, from corneas to liver and bone fragments and everything in between.

niyad

(113,581 posts)
25. Since I am into recycling, harvest everything that is reusable, crisp the rest,
Wed Aug 30, 2023, 03:43 PM
Aug 2023

and add it to the garden.

peggysue2

(10,840 posts)
12. An important reminder, thunderbeast
Wed Aug 30, 2023, 12:04 PM
Aug 2023

I don't think most people realize how vital and/or scarce transplant organs truly are. Until you or a family member is holding on for dear life waiting for that 'perfect' organ, a do or die moment.

Ms. Toad

(34,093 posts)
36. And - the criteria for organ donation is different from blood donation -
Wed Aug 30, 2023, 07:36 PM
Aug 2023

So even if you are ineligible to donate blood because you are HIV+, for example, you may still be able to donate organs to someone who is HIV+. (Just one example).

So sign up - and let them decide at the time you are done with your organs whether they could give someone else a bit more life, or eyesight.

I am a recipient of a common, but less well known, organ. I have a very aggressive cancer. That cancer required creating a 5" diameter hole in my right forearm - which could not be permanently closed up until the pathology was clear. That process takes two weeks (sometimes more). In that period, I recieved a graft from a person who allowed their skin to be used for transplants. That allowed me to be safe, without creating the trauma of two personal grafts. (My final graft is from my thigh - a very painful process. I am very grateful I did not need to go through that process twice.)

So please consider donating!

Hekate

(90,827 posts)
24. I signed my first donor card about 50 years ago. My driver's license has a little pink dot that ...
Wed Aug 30, 2023, 03:35 PM
Aug 2023

…says “Donor.” I really don’t know what they’ll find that’s useable once I shuffle off this mortal coil, but I surely won’t need it any more, and would be pleased if someone’s life could be saved.

Fla Dem

(23,760 posts)
6. So sorry to hear of the complication. What a roller coaster your family is on.
Wed Aug 30, 2023, 11:35 AM
Aug 2023

But stay positive. It WILL happen!!!

peggysue2

(10,840 posts)
14. Most definitely, Fla Dem
Wed Aug 30, 2023, 12:06 PM
Aug 2023

The surgery will happen. We just need to hold on tight.

Thanks for the note!

peggysue2

(10,840 posts)
19. I don't know how my son and his wife manage the anxiety. Sometimes they simply don't.
Wed Aug 30, 2023, 12:27 PM
Aug 2023

Lots of crying mixed with hope and prayers, support from family and friends.

But it's hard and taking a toll. My son is a nervous wreck, neither eating nor sleeping well, complaining he can't concentrate at work. My daughter-in-law has moments when she literally falls apart. But in public and anytime round the baby girl, she pulls it together, a model of patience and calm.

They all need a break. It was nice, relaxing on vacation. We returned last weekend, seven days in Ocean City, NJ with eight family members. Perfect weather, good memories. That helped.

We're back inside the storm at the moment trying desperately to draw on those seaside reserves.

Thanks for the note!

peggysue2

(10,840 posts)
20. Thanks, LetMyPeopleVote
Wed Aug 30, 2023, 12:30 PM
Aug 2023

The surgery will happen eventually. Sooner rather than later would be nice.

We just need to calm ourselves and concentrate on the patience factor.

pandr32

(11,615 posts)
18. This is got to be tough for all of you.
Wed Aug 30, 2023, 12:20 PM
Aug 2023

Here's a hug and some sincere wishes for things to go well soon.

CaliforniaPeggy

(149,715 posts)
23. Waiting is so hard! Esp. when you don't know where that end point is.
Wed Aug 30, 2023, 03:27 PM
Aug 2023

Sending hugs and all my best vibes for you, your precious granddaughter and the whole family, my dear peggysue2.

And I just contributed to your GoFundMe!

peggysue2

(10,840 posts)
30. Awwww. Thank you, Peggy
Wed Aug 30, 2023, 06:52 PM
Aug 2023

The DU family has been amazingly generous in support, good wishes and donations to the baby girl's GoFundMe appeal. Please know all of this is deeply appreciated.

My son threw me a text earlier; they're back in Philly. I asked how Cassandra was doing. She slept through the whole thing. Which is a good thing. For my son and his wife, they feel as if they've been run through a wringer several times over. The doctors told them to think of this as a good test run.

LOL.

Not sure what my son's reaction was to the comment but I can imagine what he'd say uncensored.

We'll get there.

milestogo

(16,829 posts)
27. I had a friend who was waiting for a liver transplant
Wed Aug 30, 2023, 03:48 PM
Aug 2023

He got called 5 times before he actually went to surgery for the transplant. It took him an hour to tell the story. But he finally got the liver and he's doing well.

Cassandra will get what she needs sooner or later.

peggysue2

(10,840 posts)
31. Five times! Oh, no.
Wed Aug 30, 2023, 06:56 PM
Aug 2023

Yes, I agree: The Warrior Princess will get what she needs, eventually. Fortunately, she's young enough not to be affected by fear and/or anguish. That's left to her parents and extended family.

It will work itself out.

Thanks for the note, milestogo.

milestogo

(16,829 posts)
34. I guess there are a lot of people going through this at any given time
Wed Aug 30, 2023, 07:11 PM
Aug 2023

but the stakes are so high it really becomes an emotional roller coaster.

He was also trying to figure out where his liver came from - couldn't stop thinking about it. He was already planning what to say to thank the family.

Try not to worry too much. Its a lifesaving procedure, and as frustrating as the waits are, you know that they are committed to doing a successful transplant that will save her life and give her life for years to come.

Cha

(297,692 posts)
28. Sorry to hear this PeggySue..
Wed Aug 30, 2023, 03:56 PM
Aug 2023

Best Wishes for Cassandra to receive the head surgeon's approval of her perfect match. 🤷?♀️💕

peggysue2

(10,840 posts)
32. Ahhhh, thanks Cha
Wed Aug 30, 2023, 06:59 PM
Aug 2023

The reversal was disappointing but the wait continues until that 'perfect match' truly arrives.

Ms. Toad

(34,093 posts)
35. I'm so sorry to hear it didn't work out this time -
Wed Aug 30, 2023, 07:29 PM
Aug 2023

but it will.

For others who haven't been through this:

The first stage of matching is a tissue match. Often two (or more) potential recipients are called to the hospital - one designated primary, but a back-up or two may get called as well based on the tissue match.

Once the liver is removed from the donor they have to check it for quality, disease, etc. If the liver is OK, the transplant is a go.
But it may be not OK for a variety of reasons. Depending on why it isn't OK, even if it doesn't work for the primary recipient (size, HIV+, etc.), it may work for the back-up recipient (e.g. a person with HIV can receive a liver from an HIV donor, even though it wouldn't be suitable for the general population). Or there may be conditions that make it not suitable for anyone.

Probably half of the liver recipients I know don't get a new liver on the first run to the hospital.

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