Lealonnie and Hubby: Liver Transplant Journey

TChamp: I am not sure where you get your 'medical info' from, but it doesn't appear to be from the planet earth or any medical books used here. All doom & gloom all the time is not the attitude we subscribe to. In reality, the odds of a successful liver transplant are EXCELLENT!

Midkid: The neighbor Steve is walking around and walking his dog, laughing, joking, eating, etc., and he's just 4 weeks post op. He said the pain afterward was totally manageable with a minimum of pain meds. I think things were obviously different in 2006 than they are now with the "100 days of hell" that you mention. Most transplantees are home within 4-8 weeks after surgery.

The WhatsApp folks continue to chat after they get home and for life, if they want to. They are all doing marvelously after their transplants, thankfully! The only tricky story is the man from Denver who's transplant was unsuccessful (but he didn't die TChamp!) and he's on his 2nd one and recovering now.

Lea, I know ppl who need or soon will need liver or heart transplants, both near or beyond 70. There are less than 10k donors per year, so the ppl in charge would have to be selective.

What do they look at in the screening process? How do you make the top of the list?

PeggySue: IDK what the selection process is for all organs, but for DH, it was that he would die w/o a new liver due to the 2 diseases at play. He was given 1-2 years to live w/o a transplant. So it's 'how sick you are' that gives the MELD score which is used to calculate liver issues, and I suppose there are other scores given to heart and lung transplant candidates to determine who gets those organs. Here is a link I found that briefly discusses organ transplant guidelines for each one specifically:

https://unos.org/transplant/how-we-match-organs/?gclid=EAIaIQobChMIveyj2Ziw9wIVXiitBh3SnALuEAAYAiAAEgJghfD_BwE

Lea: (((((((((((hugs)))))))))))))).

Thank you for the update, Lea. I'm glad CX started this discussion. Praying for the best possible outcome, no complications, and more comfortable hotel room.

I’m so glad that you guys have supportive new friends around you there in AZ.

Praying for things to move steadily now that you’re there.

And for a new room! 😀

Don't be too impressed -- I guarantee you the Bentley is leased. 😉

Scottsdale's no worse than Cherry Creek, and it's certainly not on a par with Aspen, so look for the nice side of things (like in Old Town) and don't listen to the nasty name-calling. That's going to be my home in the next few months.

My kindest thoughts to you Lea & Hubby.

MJ, I guarantee you the city has a Beverly Hills vibe about it, and it is quite impressive, clean and beautiful. I'd live here myself if given the opportunity and the right bank account; you are fortunate to be moving here in spite of the higher than average cost of living. Cherry Creek is a small area of Denver; Scottsdale is a pretty big city which looks all upscale and beautiful, at least the parts we've seen. The malls are amazing; the strip malls are covered in twinkling lights on the palm trees; just gorgeous and well done. We've met no snotty people here at all, either. I think when people call it 'Snottsdale' they do b/c of the monied folks living here and the jealousy factor, personally.

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

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.

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 good thoughts and sending them to you and DH.

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!

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.

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.

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 :-)

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.

Prayers sent for Chuck!!

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

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

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

Praying too. Thanks for the update.

Thoughts with you both this day, Lealonnie and C.

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!

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.

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.

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

Chuck's liver will come.

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.