Lealonnie and Hubby: Liver Transplant Journey

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.

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.

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

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.

My kindest thoughts to you Lea & Hubby.

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.

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! 😀

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.

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

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, 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?

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.

Hi All and thanks Colleen for starting this thread. We're here, after 2 days of driving and overnighting it in Albuquerque. My DD the RN is with us and WHY she wears Mennen MEN'S deoderant is beyond me. Sleeping in the same bed with her for the past 2 nights, my nose is KILLING ME! Secret makes aluminum free deoderant too, hello? :)

DH's MELD score is high enough that he's in line for a liver with the rest of the Kaiser patients here; when one comes up that fits his blood type (0, thankfully), and body size, he'll be offered it. It's up to him to accept or deny it; some can be diseased with Covid and/or Hepatitis A and/orB, so it's his call. The 'dry runs' that Midkid talks about are very real too. Our neighbor Steve had 2; he was all prepped for surgery and suddenly, the liver was no longer viable, so he was sent back to the hotel to wait again. Adrenaline is high and WHAM, you're back out of the running & in the hotel once again. I hope we don't see too many dry runs before the real deal, that's my prayer.

We have a couple here from Denver who's been here since last May. God help us all. The DH had the liver transplant in August; it failed; it took the Mayo many months to try to save the new liver, it still failed. He recently got a new 2nd transplant and is in the recovery/please don't reject stage now. Fingers crossed.

There is a whole group of Kaiser (our insurance) organ transplant patients here at the Marriott Residence Inn now either waiting for an organ (heart/lung/liver/kidney) or recovering. Our neighbor Steve is post surgery 4 weeks and looking great! His dog Rosie and my dog Honey are BFFs already. The Kaiser group is on WhatsApp and everyone talks at 2 am when they can't sleep. We meet at the pool at 6 pm every night (which is stupid imo b/c that's dinner time). But we'll go tonight to meet up; it's great to have support from folks who are all in the same boat. Everyone here is with their spouse as primary caregiver, which is nice.

The studio room we have is almost intolerable for a long period of time; there is no bedroom or door between the king bed and the living area/kitchen (full kitchen btw) and an open bathroom area (WHY DO THEY DO THIS? So when DH is up, we're all up at 4 am. The Kaiser folks said the patients switch rooms among themselves all the time! So I can put out the word we want a 1 bedroom with a DOOR (thank you Jesus) and/or a room with a handicapped bathroom (for after DH's surgery) and if/when one comes up, a Kaiser resident can switch with us, no questions asked. Kaiser also pays us $50/per person per day for food (but not while DH is in hospital; then it's just me at $50 per day) which I think is super generous. Snottsdale (as it's called) is SUPER EXPENSIVE and super gorgeous, so we're off to the store to buy some supplies here shortly. We actually saw a Bentley in the restaurant parking lot last night which DD Googled and starts at $202,000.00!

DH is finishing up now with massive testing at Mayo which then puts him officially 'listed' for a liver. Meaning, as soon as one comes in that fits him, he's offered it. It can be as soon as 3 days or as long as God knows? Women are much harder to 'fit' than men due to smaller body size; meaning they can't accommodate a large man's liver.

Full livers have to be given to those people with cirrhosis and/or cancer, such as my DH, where the entire organ is compromised and where a piece of a liver will not solve the disease. DH has non-alcoholic cirrhosis (has never been a drinker his whole life) and liver cancer which has not metastasized; once it does, he's no longer a transplant candidate, which makes his window shorter.

NGE, DH has been on the transplant list for a little over a year now; building up his 'points' and his MELD score to become eligible for transplant. He became eligible in Feb but there were too many people here at the Mayo already waiting, so we were pushed back to late April as a result.

Thanks all for the prayers!

What is his MELD score? That and blood type determine who gets what organs. A high MELD score determines your place in line.

DH had 2 dry-runs, where we were called and the liver wasn't for him. The 3rd time was a 'charm'. We had a friend who was actually working at the hospital where they were actually harvesting the organs from the donor. He called his wife and said "We are getting B's liver right now. It shouldn't be long". She showed up at the hospital where we were waiting and I burst into tears, knowing that this was IT.

Being a donor is a gift so great I cannot fathom it. We have reached out in letters to her family, but they have chosen not to respond. Nevertheless, he is grateful everyday for this gift of life.

And, truthfully, MOST adult transplants are full-liver, not partial. Children can make do with a living donor, adults, not so much.

But things are changing, and changing quickly. Prayers for Lea and her hubby. It's not fun, and they'll have a LOT of rough days....but it can happen.

If you're not a donor, please become one!! I can say that my DH's situation--the transplant team acted so respectfully towards the family of the donor. It was not rushed or pushy--they gave the family plenty of time to say their goodbyes.
Too many TV shows make this seem VERY dramatic and brutal. It's not that way at all.

Thanks again, CX for the update. Lea, thinking of you and hubby.

4.25.22

From last night:

Tomorrow is a round of testing at Mayo and then DH will be ready for transplant. He will be called when a donor dies who's his blood type and approximate body size. He'll be offered the liver which could have a disease like Covid or Hepatitis and then it's up to DH to accept it or decline it. It can take between 3 days and 6 months to get a liver. There can be what's called dry runs where DH is called, prepped for surgery and ready to go, then the liver is deemed not viable, so he's sent back to the hotel to wait. This can happen several times before the actual surgery happens. There's no way to know.

Lea - my thoughts and prayers are with you and your husband for a safe journey, a successful operation and speedy recovery.

CSMoody, it's kind of you to provide updates on Lealonnie and her husband.   Thanks to you for doing that.

I hope the journey results in success, a positive recovery, and a good life going forward.   I do think they're wise to seek out the best treatment for such a critical operation. 

Please send her my best wishes for success the next time you communicate.

So glad to hear stage one of the travel to care is done. I am aware that the waiting for a liver match is a component but believe C. must be high up on list now what with the institution telling them to come to the area and to "be ready" at a moment's notice.
TChamp, yes, Lea and hubby are well informed. They have an RN daughter in their corner also, who will be flying back and forth and will be able to interpret any medical-speak for them.
Thanking admins for moving this to Discussions so we can all follow along, and to CX for keeping us "posted".

So many prayers for you and your DH, Lea… may God be with you and keep you.

Based on some of Lea's past posts, I'm under the impression her husband has been on the transplant list for quite some time.

My DH had a liver transplant 16 years ago. He had primary liver cancer due to HepC.

We did have to wait 9 months for a liver...and he wasn't sick at all prior to the transplant. His liver functions were dropping and he wouldn't have lasted 6 more months.

He got his new liver on Sept, 11th, 2006. We can never thank the donor nor her family enough. She didn't die for him, but her death saved 5 lives.

It was a rough road to healing--they call it the 100 day walk in hell. For the first 100 days patients are on so many meds, and they fell pretty rotten. Dh had a septic infection, which is completely common and he spent longer in the hospital with that than with the transplant itself.

He is now on 1 small dose of ProGraf (tacrolimus) per day to keep rejection at bay. He's had a full life and has been alive to see all our grandkids born.

We had man in our neighborhood who had a transplant and lived 37 more years. That's a record, for sure!

I wish you the best, it's definitely not easy and I wouldn't wish it on anyone, but it is a miraculous thing. And so much has changed in the past 16 years--some really great things they do to insure a good outcome.

My SIL decided to be a liver transplant doc (not the surgeon, the Primary Care Doc) after watching what we went through. He was fascinated with it.

Wishing you all the best. Been there, done that, prayers for you!

4.23.22 Update, after 7 hours of travel:

”The first leg of the journey to Arizona and the Mayo Clinic is finished. We're looking for a good authentic New Mexican restaurant for dinner tonight. We're off tomorrow for Scottsdale/Phoenix and our final destination. It's about a 6.5 hour drive.”

Good luck, safe travels, divine order for all including the donor.

I wish them the best luck. I liver transplant is a very serious event. To begin with, the surgery is extremely risky. After the surgery if the transplant is successful, there are no guarantees that the liver graft will take. If it doesn't work, the patient dies in a matter of days. If it works, no body knows knows for how long it will continue to work. Rejection of the implant can develop immediately or later, no one knows. If the body doesn't reject it, it's still uncertain that the graft will not become affected by the liver disease that destroyed that previous liver. It's a very tough situation. The odds that the transplant will work are limited. I hope that everything will go well. A liver transplant is the last resort for liver failure. I'm sure that Lealonnie is aware of the odds.

All my best wishes to Lealonnie and husband! 😊