Lealonnie and Hubby: Liver Transplant Journey

Praying here that you guys get home safely!

Now you know where the inspiration forthe song Tumbling Tumble Weed came from.

It is a wild experience the first time. I actually ducked and I was driving. Thank The Lord for HIS care.

Lea: Thank you for the update. Travel prayers going out to you for tomorrow.

We made it to Albuquerque after a 7 hour drive and being stuffed into the car like sardines in a can! I cannot believe how much we packed in there. I was stuffed into a 2 foot hole in the backseat w Honey lying next to me, and crap piled up to the ceiling. 😣 Chuck was semi queasy after about 4 hours but we stopped and got him a drink w electrolytes and he was okay afterward.

A gigantic tumbleweed came across the highway and crashed into us at one point.....we tried swerving away from it, bit IT swerved with us, and missed the windshield by a hair. We were laughing so hard, after the horror and shock wore off, and we will never forget The Tumbleweed Incident. I had to dig a chunk of it out of the grill when we stopped later on for gas. To see such a giant mass rushing at us across the highway caused my blood pressure to spike and DDs face was red as a beet. 😂

Figuring out dinner now, then bed time....but we have a room overlooking the patio where there's a reception going on w music till 1030pm tonight....and no free rooms available . 🤣 So Showtime on tv it is, on loud, till 11.

Off for leg 2 in the morning, which is 7 hrs I think, and we'll be home, thank God. I'll be driving tomorrow so I'm hoping for no high winds like last time and no craziness on the road.

Just a bookmark 😊

Hope you got off without a hitch. GF used to live in Los Alamos so had to fly into Albuquerque. Beautiful country.

Hoping for an update this eve that the trip is half done. I am hoping it may even be enjoyable. It is always hard to leave the comfort and security of specialized care that knows what they are doing, and returning more to care as usual, but I know also you have a good solid attitude of taking things one thing at a time, one day at a time, and that you are ON TOP OF IT. Feel like I am riding this journey home with you.

Wishing you safe travels and glad you are on this next stretch to the road of restored health. I always dread going to our downtown area for doctor visits and try to schedule as many as possible in the area just over the bridge from the island we are on. Hope you manage them with the least amount of stress possible.

Our middle child left with her family yesterday and were flying to Denver where her in laws are. Driving home to Utah from there today. They said the airport is somewhat of a pain to get to where the parents live. Sounded like NY where we used to live.

Via con Dios, Lea and Chuck!

Lea: Praying that you rest well tonight, dear lady and prayers for your homeward bound trip.💕💕

Yessss! May tomorrow morning get here without any hiccups!🎈🎈🎈

And, seconding the vote to ask you to PLEASE do some self care, or even, something FUN for YOU, when you get home. 😀

newbiewife, wow, what a terrible story about the shingles for DH and the permanent foot drop. So glad he's able to walk again though, thank God. Chuck wears Merrell's all the time, those are his shoes of choice! He's looking forward to going to PT and getting the AFO; I'm happy to hear it's not onerous like this boot is. He is dying to drive again (which he may be able to do now, but IDK), so that's our hope; that he heals enough to where he can since it's his right foot that's been affected.

MidKid: the charts I kept with the triple bypass, and now again with the liver t/p. The labs will now be weekly (1x per week) at home, and he's already come down from the Tacrolimus quite a bit, which is nice. Chuck will have quite a few appts in Denver at first, between his PCP, cardiologist, physical therapy, etc, and I'll have to do all the driving, so we're trying to set up the appts LOCALLY and not downtown. But the cardiologist is only located d/t, and 'wound care' too, which is absurd since the 'wound' is totally healed, but Kaiser is a stickler about how they want things done. I intend to take care of myself too here, believe me. First thing I'm doing is calling my hairdresser b/c my hair looks like I stuck my finger in an electrical socket FGS. So dry, frizzed out & bleached out from the sun it's almost comical! But I did bring 3 cans of L'Oreal root concealer with me so the gray is hidden, at least :)

We're almost packed up........UGH......had more stuff than I thought. In fact, my suitcase wasn't very full when we came here and now I had to sit on it to zip it up :( I did buy a zip up Mayo hoodie for myself...got the last one they had at the Scottsdale campus gift shop and it was $45 vs the non zip hoodies I bought for DD and Chuck (pull overs) for $75 each. SCORE. Now we can take a photo together of the 3 of us wearing our hoodies. But not today, it's like 110 degrees out LOL

We'll be on the road by 7 am tomorrow, that's the plan, then overnighting in Albuquerque. Let the second leg of the journey begin! :)

So happy to hear such great news! And if Chuck has to use an AFO for the foot drop, it's not too onerous. My husband got a weird case of shingles that went into his spine and rendered him totally unable to walk due to nerve damage in one leg. After 5-6 months of healing and a lot of PT, he improved to being able to walk with a rollator but was left with in his case permanent foot drop. He was so happy just to be walking again that he was quite happy with the AFO as it made walking a lot easier and safer. Good quality shoes are important too. He has several pairs of Merrills that work well with the AFO.

Again, best wishes to you and Chuck, safe travel, and happy homecoming!

So glad ur going home. He will recuperate better there.

Home is really the best place to be!

For us, the coming and going to the hospital with one crisis after another was exhausting! When we finally 'went home' and 'stayed" (Oh, those thrice weekly blood draws and then a clinic day--ugh!) and THEN, on Jan 1st, we changed out our healthcare providers (DH had his transplant out of network and they never did get it 'right'---I fought them and the ins company for over a year!) to the University Hospital that gave him incredibly better care. Things calmed down a lot.

I look back, and look at the charts I kept and the 'diary' and remember how cranky DH was and how very alone I was---and I am SO HAPPY for you that you have had a strong support system. I had to lean onto my sweet neighbors b/c all 3 of my daughters had all just had babies!! I also leaned on God, so much I found myself apologizing to Him for bothering him.

SO GLAD for you--this was not without the drama--but he will continue to heal and get better.

Just promise me you do something just for YOU everyday. I did not and paid a huge price.

And you're getting out of AZ before the really hot weather hits! I live in Utah and we don't get the super hot--endless days up north.

Prayers for you guys! Travel safely!!

Lea, absolutely fantastic news! Continuing prayers for a smooth re-entry back to everyday "boring" life ;-) Blessings!

I am glad… words never feel like enough during times like these.

When I was going through the weeks of day in, day out hospital life after my (young) mom’s stroke while caring for my DH’s (old) parents, I experienced many of the same effects you are going through. It has got to be so much worse when it is the love of your life that is so touch and go.

I pray for the peace that passes understanding to envelop your heart and that your body and mind can experience that peace as well. You have been on such high alert for so long, it is no surprise that you are experiencing that heightened state. Do find time to do anything that brings you calm and don’t feel guilty doing so. Those “symptoms” indicate that something is starting to give, and it’s good to not let that take over and get worse. I am glad you are keeping that in mind to address when you get home. What you have experienced is very traumatic for each of you in your own way. Just because you weren’t under the knife doesn’t mean you didn’t suffer right along with him.

Take good care.

HopeFloats, thank you very much for such a sweet comment; it brought tears to my eyes. A kind and heartfelt comment such as yours can make a huge difference to someone who's stressed out and/or suffering trauma in some way, believe me.

Just last night I realized my startle reflex is very revved up again and I'm jumping thru my skin at the slightest noise. My anxiety level is heightened these days & I'm having nightmares as well. It may be time to address that when I get home, if things don't get better. At first I was very surprised, but now, not so much. It's been a really long 7 weeks with a lot of ups and downs, a huge roller coaster ride and Chuck is feeling it acutely himself. For him I'd expect it though, he's the patient. We often discount the caregiver and what s/he is going through on these kinds of journeys. We shouldn't. It's hard for everyone, us included. I admire ALL caregivers everywhere for all we do, all we give, all the hard work we put out and how thin we spread ourselves in our effort to give of ourselves. It should never be diminished or discounted in any way. WE ROCK!

Lea, finally caught up… what a roller coaster. SO THRILLED for you both and will be praying for safe and comfortable travels. So special that you, Chuck and DD get to share the homeward bound leg of this tremendous journey together.

If you’ll forgive the oddball analogy, your love for each other is like the elven rope in Lord of the Rings. Stronger than one would guess, lightweight, and infused with natural light. It is a testament to who you are as parents that your girl has your back through such a life or death situation. She sounds strong, and I am sure will find her path.

On a lighter note, I had noticed your new avatar and thought it was just a funny random dog pic. It made me smile. Then, I got caught up on this thread and realized that it was Honey and her very cool boots. I laughed out loud.

Wishing you much laughter in the weeks ahead, Hope

It'll be so nice for you guys to get back home. Woohoo!

Lea: Wonderful news on Chuck being released from Mayo!

Praise The Lord!

You are going to miss out on our summer weather, lucky you!

Sending prayers of thanksgiving on your great news!

Looking forward to reading that you’re home, sweet home!

🎈🎉🍾🎉🍾🎉🍾🎈

Just the best update ever, Lea. Still so much ahead with packing and travel. So proud of Chuck, of you all. Tell him my favorite TV detective of older times was Inspector Morse on PBS. John Thaw,the actor, had a foot drop limp. I always found it such a romantic limp. Mr Thaw, when questioned about the origin of the limp, never failed to come up with some unique story about how he "got it".
So glad to have this news from you.

That is great news. You both and honey will be so happy to be back home. Have a safe drive back.

Great news!!!!!!!

Drumroll please................Chuck has been RELEASED from Clinic here at Mayo & discharged to GO HOME! We are waiting for Kaiser to release him as well, which we expect to happen soon so we can leave on Friday morning, if all goes well. DD has Friday off from work which is perfect, too, so we can share the driving, stop in NM for the night, and be home by Saturday afternoon.

The Neurologist wrote him a prescription for physical therapy at home (for the drop foot) along with a recommendation for an AFO foot brace to wear in his shoe instead of that giant boot he's been wearing. She feels confident the matter will resolve in time, and goes with the territory for some who have undergone 2 back-to-back surgeries, lost a lot of weight in a short time, and have a habit of crossing their legs. It's already quite a bit better, so I'm happy she wrote the orders.

Now to sort through all this crapola here in our studio and get it packed into the car tomorrow, that should be quite the task! As it turns out, 2 of our support group members (past and present) live nearby to us in the Denver area, so we can get together down the road. I love that idea. The two men who were double transplants the other day are doing very well, both of them.

I'll post more updates as we go, but just wanted to let my supporters know that we MADE IT! Thanks to God, the Mayo Clinic, and the donor, for Chuck's new life. The doctor's told us he had well under 1 year left to live had he not gotten this new liver. To say we're grateful is a gross understatement.

Good news about maybe going home.

Lea: Wonderful news about the possibility of returning to your home.💕💕💕💕

congratulations on maybe going home!!! :) :) :) awesome!!!! :) :) :)

So thrilled for you that you might be going home this weekend!

Wowwwwwza! 🎉🎈🎉🎈🎉🎈🎉🎈