Lealonnie and Hubby: Liver Transplant Journey

Lea, how's it going? Hoping Chuck is still making daily improvements? How are YOU doing?

Hoping your absence for a day means you are taking a few days to catch your breath Lea! Thinking of you. I know we all are.

May 24, 2022
Caring Bridge Journal Entry
1:00 pm
Chuck had 3 appointments today; labs, an RN visit & a doctor visit with Dr Mayo. His numbers are looking great to the point where his Friday RN & doctor appointments have been canceled! He has a lab visit only on that day to make sure his bloodwork is still on track, and that's it. Dr Mayo told us to enjoy the rest of that day OFF, which we're totally on board with.

If the EMG nerve test doesn't show anything horrible going on, Chuck can get physical therapy back home for his drop-foot issue which seems to be improving with the use of the boot and walking. His last scheduled appointment here in Arizona is on June 3, and barring nothing going wrong in the interim, we will be discharged from the Mayo Clinic and given over to Kaiser care back in Denver meaning we can GO HOME! We would be very happy to do so, although the prospect of leaving the cocoon of safety & efficiency here at the Mayo is a bit scary. We'll take things one day at a time in the meanwhile, however, and enjoy our remaining time here. It's comfortable and we're in good hands here, which is all that truly counts. 

The weight loss has stopped for now and Chuck is back on the upswing!

I posted a photo of him at our kitchen counter eating and looking pretty darn good! He's also back to using his outside voice which is very loud and booming and surprised our support group when he hollered for Honey! 🤣

What a WONDERFUL update!

Hurray for Chuck!

I am so glad you will be getting to go home. I think we all recuperate better in our own home.

That's an awesome update! yay!

What a great update, Lea!

fantastic!! :) :) :)

Such great news. The marvels of science and Chucks willingness to go for it are inspiring. He is blessed to have such a supportive family.

5.26.22
Update:
____________

4:30 pm

Things have taken a turn for the worse today; Chuck is having some swelling above the staple line on his incision and a few other issues like pain in his kidney/lower back area that is sending us back to the ER right now, per Dr. Aqel, the director of the transplant department here at Mayo. This is the last place he was expecting to go today..........😟 
I will keep you updated as we find out what's going on. Please send prayers that this is just a minor hiccup in his recovery.

Lea - praying this is just a bump on the road to recovery. Sending you strength to keep going...

(((Hugs)))) and good thoughts to both of you.

Lea: Prayers sent.

Praying for both of you this morning.

many prayers and hugs sent!!

Lea, praying and sending (((hugs)))!

Looks like the rollercoaster ride isn't completely over and your are riding again. I just finished Delia Ephron's memoir (Left on Tenth) about her diagnosis with Leukemia and her stem cell transplant. What a journey she was on, and it is always so clear that family and friends are along on any ride such as this. (I love memoirs; they so show us in the words of wonderful writers what we are capable of just because it ended up on our plate).
Delia had been warned ahead of time that she was looking at a year of recovery, and of ups and downs, and that's about what it took, but she did it, and that in her mid 70s. So much admiration for the woman.
Sorry for another bump in the road. Relieved it happened before discharge and long trip home. Thinking of you and waiting your updates, and thanking you so much for keeping us informed!)

Update, 5.27.22
______________
9:00 am

DH was admitted to the hospital this morning at 1:00 am. A CT scan with contrast revealed bilateral pulmonary emboli (2 small blood clots in his lungs) and he's also constipated. I knew something was wrong, just not WHAT was wrong, exactly. An ultrasound was done on his legs at 3 am to see if DVTs (deep vein thrombosis) were going on in his calves, and there are NONE, thank God. 
The doctors are not sure if the recent Predaxa blood thinner is to blame (given to him for the huge surface blood clot in his forearm) in that it's not working properly, or what. So they're holding off on giving it to him for now while they come up with another treatment plan for him.

He's aggravated to be back in the hospital with another setback, and being on prednisone is not helping his mood, to be honest. Steroids are never helpful to anyone with mood swings and temperament, only with helping keep the inflammation down and keeping the new liver from rejecting. Taking so many drugs is a difficult thing for DH, who's never taken medication in his life aside from a statin and a small dose of a heart med after his triple bypass in 2020. 

I'm on my way to the hospital now with his CPAP machine and his tablet and some encouraging words to get him over this hump.

I'll update when I have news to share, hopefully all good.

I am so glad you aren't back home addressing this. At least this happened while you are still where you are. Well I know the steroid rage thing. It is real. That stuff does mess with your head. I have a real and recent story about it, but you are busy now, so I will save that for a free day! Keep on keeping on. Sorry for this setback and so relieved at the excellent care.

Update:
_______

5.27.22
12:00 noon

DH is being discharged from the hospital in the next hour or two! The PEs are small enough that continued use of blood thinners should manage them for the next 3-6 months. The hematologist said the lungs will normally dissolve the clots naturally, in time. A blood test is being run to see if there is any auto immune disorder at play contributing to the clotting issue, just to be sure. 

His constipation issue has been resolved and his liver function tests are all within normal range. The anti rejection meds will actually be lowered today, which is a bit more good news.

I'll update again later. For now, we're just looking forward to leaving the hospital and having a relaxing afternoon and evening at the hotel.

I'm so glad that things seem to be heading in the right direction again. This has been quite the journey you both have been on, but through it all God has been right by your side, and you can't ask for more than that.
I'm continuing to lift you both up in prayer.

((HUGS))

Funky....true. I felt like he had to be seen in the ER, and Dd is the one who talked the doc into using contrast with the CT scan, or the PEs wouldn't have been found. The factory in China that makes contrast has been shut down for covid, so now there's a shortage.

Divine intervention the whole way.

Anyway, Alva, Honey and I are sweating bullets out at the pool now in the 105 degree heat. Chuck is getting a magnesium IV now bc he's still too low, for some reason, even with 3 tabs a day by mouth and 2 previous IVs, and DD will go pick him up later when he's discharged. I bought them both a Mayo Hoodie which I have in the closet in our hotel room. Dd has been wanting one but didn't want to spend the $$$$$. Slick, eh? :) And yes, I am very glad to have had this happen HERE instead of in Denver, amen sister.

From what I can see just typing it in I think that coagulation "tics" aren't uncommon in a lot of liver transplant -- thinking that things will right themselves as this becomes day added to day. I hope so. I will say that reading anything on the internet scares the willies out of you, and I don't mean the cwillies, either. Having just finished Delia Ephron's excellent memoir, new, Left on Tenth, about her bone marrow transplant, she said she left herself completely in the hands of the MD she trusted, didn't WANT to know anything, and her DH followed all her blood counts and labs as she didn't want to know a thing. Said her sister Nora had been her opposite in this. Makes me think there's a lot to be said for it. If you read anything about things you get scared witless. When I had breast cancer, because I was an RN they told me lots they wouldn't share with other patients so I was the lucky recipient of the news that there was a HUGE FIGHT at the tumor board about how to treat my very aggressive cancer. "hee hee". Something I DIDN'T want to know. At the time, what they failed to know is I was NOT an RN near so much as I was a patient, wanting what all patients want, a neat answer tied up in a pretty bow.
Glad Chuck is coming back home to the home away from home. Thinking of you. Hope it gets cool enough for the hoodies.

Scottsdale won't be cool enough for hoodies until Christmas, if then.

Lea, so happy to hear that things are sorting out. God is good!

One thing you should ask about, is he constipated because of the magnesium deficiency? It is a common side effect of being deficient in mag.

Did you know that gray hair is a copper deficiency? Yep, started using collodial copper and no more gray hair. Which is kinda sad because it was cutlet and my blonde hair is straight as can be. :-(

Please be careful sun bathing, you can get to much sun really quickly in this climate, speaking from personal experience.

Curlie not cutlet, stupid smart phone.

ITRR and Alva....hoodies are for Colorado where we dress in layers all year round, practically. Although Chuck wore his in the hotel room for an hour today....he was cold in the A.C.. 😊 No sunbathing for me! I sat in the shade and under an umbrella by the pool and still sweated bullets! He was constipated bc of too little fiber intake.....I lost sight of that while fixating on water intake, protein intake, shake intake, meds etc. It's madness, I'm telling you! Now I'm adding in fiber foods too, so soon I'll be totally insane from keeping track of 100 things😑. God help me, I go to the store daily and still forget something. I did not know about the gray hair....at this point, I'd have to buy a collodial copper factory I think lol. I do thank God for L'Oreal and my hairdresser who applies it for me every time! Ha! One thing I've noticed here is how dry my mouth is all the time, no matter how much fluid I drink. Cotton mouth is real in AZ. And alligator skin even worse than I have in Colo.

Wait...so if I start taking collodial copper my gray will go AWAY? Is that what u r saying????? For real???? I'd really love to ditch the dye.....I wonder what color my natural hair is?? 🤣

Hey! I've earned each and every one of these gray hairs!

Seriously, Lea, I'm glad Chuck's latest health issue was, comparatively speaking, a blip on the radar, and nothing major. Continuing prayers for you both.