Lealonnie and Hubby: Liver Transplant Journey

wishing everything good for you, lea and your husband!!! deep prayers for you!

Wishing you both the best!!

wishing you both caring staff!

May The Lord guide the surgeons hands and be with you both.

Wishing you all the best xxxx

Reporting so admins will be sure to see we would ALL love to see this moved to discussions so it can go on forever.
CX, bless you for doing this. I so appreciate it. I want to be able to hold the two of them close in my heart on this journey but I don't want to bother Lea about updates when she has so much family and friends to keep informed.
I am so impressed on what they are doing for their housing on this journey where they have to move so far from home.
THANK YOU for this post; I sure will be following.

Prayers for both Lea and her husband, and for everyone involved in the procedure.

Praying for safe travels and that hubby won't have to wait long for his new liver. And praying for you Lealonnie as you just ended one journey with your mom and are now starting this new one with your husband.
I am standing in agreement with all those on here for God's strength and peace to be with you both and for your husbands complete healing with no complications or setbacks. God bless you both.

An update:

“Dh was reminded once again he can get a liver anytime between 3 days & 6 months. Someone has to DIE first and be the right blood type and liver size for his body and not diseased, then the transplant can happen; we'll be called, offered the liver & have to be on the campus within one hour. The surgery will take place then; he'll spend about a week in the hospital, then come back to the hotel to recover for about a month to make sure the liver is not rejected. Then we can come back home.”

Yes, and amen.

Theres a tab to start a discussion, and in any case, the admins are very proactive.

And while I know Lea is all our friend, I can’t help but wonder how her h ended up top of the transplant list in his 70s, given the fact that beyond the surgery, he will be on immunocompromised drugs forever.

Best of luck to you both. We certainly know here that both patient and caregiver need supbort, so you have it here.

Not uncommon at all. You can have a better chance getting a liver in some states than others. A friend's husband was also on the transplant list in Colorado, and his doctor told him to go to Michigan instead. He had a transplant in weeks instead of months, which he didn't have to spare.

Remember, too, livers can be transplanted from living donors, so not everyone needs a full liver.

I think it’s a full transplant, given that moody said someone would have to die first.

Traveling mercies Lealonnie!
And thanks for the updates!

Thank you CXMoody!

On my tablet "questions" are at the top, ""discussions" are at the bottom.

Pray that everything goes smoothly.

All my best wishes to Lealonnie and husband! 😊

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.

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

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.”

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!

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.

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

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".

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.

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

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.

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

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.

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!