Lealonnie and Hubby: Liver Transplant Journey

Folks, I think we need to acknowledge the strain that Lea and Chuck must be under right now and leave anything other than support for them at the doorstep.

I'm sure yesterday gave you both an opportunity to get used to the strong emotions that go along with this harrowing process. Via con Dios ♥️ ❤️ 💙 💕

Lea, the only disagreement I’ve had with you is to point out that factually the donor couldn’t have been brain dead and still breathing independently for any amount of time.

I assume we share the same interest in making more organs available. If it gets out that respected institutions are actually telling recipients that there’s a donor available before he has died officially, that could make more donors or donor families less apt to follow through. All the recipient needs to know is that there might be a liver available and not the backstory while the donor is technically alive and with their own Medical privacy intact. And that’s the only way you can get even the paltry 10k supply of donors and their families to make the commitment.

PeggySue.....please STOP commenting on this thread. Thank you.

CM....we wait. Yesterday was a dry run. Another donor will come along and we will try again.

Thank you weary, sp, alva....for your support. Today is a better day and we are relaxing and moving forward.

I always say that the "waiting room" is the worst room in the house. I am sorry this didn't work out this time, both for you and hubby, and for the person who so wishes that her/his organs would go on to give new life. You know the chances of this and how this works, so it is more waiting. Thanks for keeping us abreast of everything, Lea.

Hugs to you both.

It's an awful process, isn't it? Hope you have lots of tips and wrinkles to help keep your minds off the waiting. What happens now?

I had no idea about how the organ donation and recipient process worked. It is fascinating. Hoping DH gets his transplant soon.

I'm praying, Lealonnie!

Lea, he couldn’t have been brain dead if he was breathing 30 minutes after life support had ended, given that breathing is controlled by the brain.

Telling the recipient family anytime earlier than when the organ harvesting process was 100 percent sure to go forward just seems…kinda cruel to everyone.

The prioritized recipients should be donors, preferably longtime ones. There are only about 10k donors available for 110k people, and if you didn’t sign up to do this when your organs could actually help others, you can be the 9 out of 10 not considered now.

PeggySue....I can tell you there are mixed feelings here and we weren't "hoping" this person died FGS. S/He was an organ donor officially brain dead with a small window of time in which the liver could be harvested. S/He is going to die anyway, whether or not the Mayo team is there to harvest the organs or not. Dh and I are organ donors ourselves and will be in this position too one day, along with our kids. It's the way the cycle works.

I am not going to feel guilty for being an organ recipient....not at all. That is not the purpose of being here and going thru this process. And, the recipients have to prep and fast and be tested and ready to go if the transplant is a go, and they have to accept the organ, so sometimes we can't be told at the last minute. And, life support cannot be used AFTER a person dies, either, bc their organs begin to die as soon as they do. That's why there's a 30 minute window to harvest organs.

In a perfect world, we wouldn't be in need of a new liver and this patient wouldn't have died of a cardiac issue. And sometimes organ recipients wind up dying waiting for a donor, so thats so sad for THEIR family. So much for perfect world scenarios, huh?

Colleen, thanks for keeping everyone updated here, I appreciate it.

You know, these places shouldn’t even call potential recipients until the person has officially been declared dead to avoid anyone being in the position of hoping that they die. People can be hooked up to life support after their brain dies, and that’s the time recipients should be told.

((((Hugs))))) all around. So sad for the donor's family.

Chuck's liver will come.

4.28.22
2:00 PM Thursday: The donor liver is not viable; the patient did not pass away within the 30 minute window after s/he was taken off of life support, so the transplant team was unable to harvest the liver. It's a no go for this time around, and we'll wait once more. Part of DH is relieved; the other part is disappointed.

10:30 am Thursday: The Mayo transplant team is flying out to the DCD* patient now to witness the patient being taken off the ventilator. S/he has 30 minutes to pass away in order for the organs to be viable for transplantation and harvested by the team. If more than 30 minutes goes by before the person expires, the organs are no longer usable and considered 'damaged.' If the patient expires in time, the liver will be harvested by the team, biopsied, determined to be usable, and flown back to Arizona later today for transplant into DH. The nurse DH spoke to a short while ago feels there is a 50/50 chance of this patient expiring in 30 minutes after coming off the ventilator, after looking over their chart.

*DCD=Donation After Cardiac Death
A donor after cardiac death (DCD) is a donor who has suffered devastating and irreversible brain injury and may be near death, but does not meet formal brain death criteria.

Coming off of a vent may mean they can continue breathing on their own for longer than 30 minutes (since lung damage is not an issue). She said she's 'been wrong many times before' so don't hold her to that. 

We won't know anything until this afternoon some time. Mayo will transplant at midnight if necessary. Meanwhile, DH can't have any food or water since 9:30 am today in anticipation of surgery.

I will keep you updated here as news comes in. Praying for the family of the person who's DCD and being taken off the ventilator shortly. And leaving the results in God's hands, frankly. That's all we can do.

Lea, I am sending you and your husband the best possible vibes and hopes for more peaceful times ahead!

Blessings to the donor as well.

I’m so glad you’re husband has been given this chance. Now big hugs to you, Lealonnie!

Thoughts with you both this day, Lealonnie and C.

Praying too. Thanks for the update.

Praying for all to go well, and for just the right match!

4.27.22

1:00 PM: The liver is going to be removed tomorrow early afternoon; DH can't eat after 8 am tomorrow (Thurs) morning in anticipation of getting the transplant tomorrow late afternoon.

His Covid test was negative.

We now wait till tomorrow for the possible transplant.

I sincerely hope this is the real deal and the organ is a good one and is a match.

Wonderful news, we all hope. Just know there are lots of people pulling for your husband and you.

Prayers sent for Chuck!!

Just in:

6:15am Mayo called: it looks like there is A LIVER AVAILABLE FOR CHUCK HERE SHORTLY! 😁 He is first in line for it. The man is on life support and will pass soon. Then his liver will be biopsied to be certain of its integrity before DH is called. He's been ordered to get a drive thru Covid test by 9 am today in anticipation of transplant this afternoon POTENTIALLY. THIS may or may not happen. This can be a dry run meaning he gets to the hospital, prepped for surgery, and the liver is deemed to be not viable at the last moment. And he's sent back to the hotel to wait.
Or this could be the real deal folks. 
No way to know.  

Send prayers.

I'll keep you updated.

LL I'll pass on the bone marrow transplant story to my son. Thanks for that! Praying you have a blessed day and for peace in your hearts to cover anything else :-)

From 4.26.22:

DH's tests all came back normal, thank God, so he's cleared for surgery. He was also told he's in far better shape than most of the Mayo's other transplant patients so they expect him to have no major issues recuperating. There can always be complications, of course, but complications notwithstanding, he's healthy and strong enough to be able to recover from the actual surgery very well, in the surgeon's opinion.

The surgeon told DH that these days, there is a pump system that keeps the donated livers viable for a lot longer than they once were, so it's fine for us to be out and about while we wait; we can have a few hours before we 'must' be at the Mayo for transplant once DH accepts a liver. The surgeon recommended we do fun things and try to stay relaxed during this waiting period, too.

We dropped DD off at the airport today (it was 105 degrees) and went to Safeway afterward, when DH noticed he MISSED A CALL from the Mayo Clinic. He was having a meltdown in the checkout aisle & telling the cashier to fuggedabout ringing up the last few items, when I pulled out my cell phone (Mayo will call BOTH of us when there is a liver available); there was no call on my phone. So we hurried up and checked out and went to the car to call them back, but the number wasn't one that we could return a call on. No messages on DH's Mayo portal either, so obviously it was not an urgent call of any kind.

Geaton, bless your son for being a donor. I am one myself and so is DH and DD, but not until we die. DH's BFF had/has lymphoma from years of exposure to Roundup weed killer; he almost died 3x until he had a bone marrow transplant from his sister (who was the donor) and now he's in full remission for the past 18 months or so, thank God.

Riverdale, your issues are just as important to you and your mom as my issues are to me and DH. You and your mom have been thru hell and back over the past what? Year or so? IDK what the 'cutoff' date is for donating a liver. If a person dies and the liver looks good, first it's removed and biopsied; then it's determined to be either good enough to be transplanted or not.

Alva, thankfully Kaiser is giving us that per diem b/c the prices here at the grocery store are staggering *compared to metro Denver* I spent $238 on what would have been 1/3 less *literally* back home. so I feel relieved to know we're being reimbursed for our living expenses.

Colleen: a 1 bedroom unit becomes avail on Thurs or Fri this week! So we went to look at it and it's quite a bit smaller than our studio but it has a DOOR on the bedroom; and 2 tvs; one for the living room area and 1 for the bedroom. But the shower has a tub, meaning DH would have to climb into it to shower after the surgery; the incision is quite large across the stomach area, so IDK about that; he'll have to see if that would be an obstacle or not. Also the unit does not have an oven (we have one in our studio even though it's awfully hot to cook in oven) so it's a trade off. Pros & cons to both units, so we may just stay where we're at. We can get used to most anything, in reality. It's just long term we're thinking about, which situ would be more comfy.

Thanks everyone for the hugs and words of comfort; I appreciate it. I will be off of AC for a while and Colleen will update from CaringBridge if there's any news to report.

LL1, wishing you a blessed experience, a liver soon, acceptance, full healing and peace in your hearts through it all.

Right before I opened this discussion to catch up, my middle son (who works at the Mayo lab, Rochester) called to tell me he had signed up with Be The Match two years ago and was just contacted today to begin the process to assess him as a match for a bone marrow transplant for a newborn. I had no idea he had signed up to do this. So proud of him.

One of my oldest and dearest friends years ago donated a portion of his liver to someone who was very ill for a long time. My friend is doing fine today. May the (eventual) donor's family have transcendent peace and be filled with comfort knowing their LO's gift is a treasure of immeasurable value. Looking forward to your updates!

Lea, thinking good thoughts and sending them to you and DH.

Isn't there somewhat of a cut off date for a donor's liver? I haven't had an alcoholic drink in over 13 years but I just wonder how desirable my liver would be as I enter my later 60's? I haven't been told there is anything wrong with it but I just wonder about that.

I read down and you provided so much interesting information LeaL as you always do. It makes my little issues of telling my mother no they will no longer do PT for you even though they broke your femurs seem less arduous. . She had little use of her legs before.

Hope you stay strong and continue to see a light at an end of a tunnel. You both certainly deserve the best possible and I hope for that very much.

Lea, thinking of you a lot! So great to read your update about your living, about the others you are getting as friends who are in the "waiting room" as well. I can't imagine the stipend of 50.00 a day for food! Lordy, what a program.

Thinking about you often. Of course I hope all goes well. So glad this post started