Turns Out I Jumped the Gun on Cassandra

[peggysue2]

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.

[blm]

1. 🫶🏽

[sheshe2]

2. Stay strong, Peggysue.

❤️❤️❤️

[peggysue2]

9. I'm trying, sheshe

The roller-coaster ride continues!

[4lbs]

3. yeah, "perfect match" can sometimes still mean issues

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. I could kick myself because . . .

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.

[niyad]

4. Holding you all in light and love. Your DU family is here for you. Lean as hard as

you need.

[peggysue2]

11. Thanks for that, niyad

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

Appreciate it.

[Thunderbeast]

5. Please, people....Update your donor documentation and tell EVERYONE of your wishes!

[calimary]

8. That's a good idea.

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]

25. Since I am into recycling, harvest everything that is reusable, crisp the rest,

and add it to the garden.

[peggysue2]

12. An important reminder, thunderbeast

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]

36. And - the criteria for organ donation is different from blood donation -

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]

24. I signed my first donor card about 50 years ago. My driver's license has a little pink dot that ...

…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.

[niyad]

26. Same here!

[Fla Dem]

6. So sorry to hear of the complication. What a roller coaster your family is on.

But stay positive. It WILL happen!!!

[peggysue2]

14. Most definitely, Fla Dem

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

Thanks for the note!

[Karadeniz]

7. Damn!!!

[peggysue2]

15. That was pretty much my reaction, Karadeniz

That a few other choice expletives.

[LiberalFighter]

13. Not sure how I would handle that stress.

[peggysue2]

19. I don't know how my son and his wife manage the anxiety. Sometimes they simply don't.

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!

[LetMyPeopleVote]

16. I am sorry about the lack of a liver match

Your family will be in my prayers

[peggysue2]

20. Thanks, LetMyPeopleVote

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

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

[Evolve Dammit]

17. Hang in there. Sending hopeful vibes.

[peggysue2]

21. We're hanging and . . .

collecting those positive vibes.

Thanks, Evolve.

[Evolve Dammit]

29. Love ya

[pandr32]

18. This is got to be tough for all of you.

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

[peggysue2]

22. Thanks for that hug, pandr32

[CaliforniaPeggy]

23. Waiting is so hard! Esp. when you don't know where that end point is.

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]

30. Awwww. Thank you, Peggy

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]

27. I had a friend who was waiting for a liver transplant

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]

31. Five times! Oh, no.

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]

34. I guess there are a lot of people going through this at any given time

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]

28. Sorry to hear this PeggySue..

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

[peggysue2]

32. Ahhhh, thanks Cha

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

[Cha]

33. 💚🕯️🕊️🙏💕

[Ms. Toad]

35. I'm so sorry to hear it didn't work out this time -

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.