Lealonnie and Hubby: Liver Transplant Journey

4:00 pm Caring Bridge

Today is Chuck's ONE MONTH ANNIVERSARY of getting his new liver! It was this time of day on April 29th when we got the call. I was putting on my bathing suit to go to the pool when Chuck got 'the call'. I thought he was joking when he told me, it's time to go to the hospital, because we'd just had that 'dry run' 2 days earlier. But it was the real deal, and here we sit, one month later, with him having a healthy liver. Truly a miracle & a gift from God and the donor who lost his or her life but gave Chuck a new life as result of their generosity.

Speaking of which, we were sent guidelines by the Mayo to write thank you letters to the donor's family for the gift of this liver. We can each write a letter to the family, which we will do. It's hard to come up with words to say "Thank You" for such a gift, isn't it? And to express gratitude to someone who's lost a loved one while our family has the gift of an extended life for our loved one. The cycle of life is an amazing and precious thing. I know that the vast majority of our blended family is organ donors; if you are not yourself, now is a good time to consider becoming one. The gift of eyesight or a longer life you can bestow upon someone else by donating your organs or tissues is something that is a treasure beyond measure.

Chuck has had another good day today, thank God. I ran off to Whole Foods again to pick up some very high fiber cereal for him after doing some online research, and found one brand with 17 gms of fiber per serving. I wonder if Yule Gibbons scraped any tree bark off in the process of making this 'yummy' cereal (for those of you old enough to remember good ole Yule Gibbons who was known for saying "Many parts of the pine tree are edible.") 😂 As a show of good measure, I also picked up a slab of BBQ ribs from the smoke table because we've been watching way way WAY too many episodes of Diners, Drive In's & Dives lately. Yesterday was back to back episodes of BBQ joints across the USA. 😏 

We're off for another walk around the hotel now. Oh, I forgot. We found a patch of GRASS on our last walk and Honey thought she was in heaven! She even took an extra poop to commemorate the happy event, after being forced to do her business on gravel & rocks for the past month. I'll take a photo of the hallowed ground & post it later on.

I'll update again tomorrow with more good news from the recovery front. Till then, wishing you all a great Sunday evening.

Happy One Month Transplant Anniversary, you guys!

Big hugs!

Lea-

We live in Utah and it gets hot and dry here, but nothing like AZ! I try to drink all day, but it's almost impossible to stay hydrated.

SIL is a doc and he will do an IV run when I've had a migraine--being dehydrated makes those worse, or even causes them!

Dh was adamantly opposed to anything to move his stubborn bowels until the night he had the male nurse with HUGE fingers who just came in an inserted 3-4 suppositories--and then waited for the outcome. It was beyond humiliating for DH (he called me minutes after this event) and I actually laughed at his embarrassment. I said "Pick your battles, pal. Either take the laxatives by mouth or have them GIVEN to you". He moaned and said "WHY couldn't Hi Ling have been my nurse tonight? Her fingers are TINY!" Not much sympathy on my part, I had delivered 5-10lb babies and there is no 'delight' in that.

And yes, we saw some mighty sick people. DH's septic infection was awful, but after that passed, he did heal with not many complications. It was hard to take a 'healthy looking' guy to the hospital--he never turned yellow, or orange. Other than being mad at me for a few months, he was a pretty good patient.

You'll look back on this and while time does mellow our memories, some of it will stay fresh in your mind. Chuck sounds like a much calmer person!

Prayers for you guys!!

Praying 🙏🏼 for Lealonnie & hubby..Hugs 🤗

Lea, if you can, order some Trace minerals - electrolyte stamina from Amazon. If you drink alkalized water, you will probably not need to piddle as much, it hydrates the cells, so it doesn't all flush straight through. I was amazed when I 1st started drinking it.

These are way better then Gatorade. You can't drink enough Gatorade to replenish the deficiency, seriously.

Quick story. We were camp hosting and the maintenance man's wife was having a hard time. She refused the pills but, would drink Gatorade, so I gave her that. She still ended up in the hospital with severe dehydration, the doctor explained to her how much Gatorade she would have to drink to replenish and have enough for what her body uses daily, he then prescribed the very pills she refused. She was so mad when she told me this and I didn't even say I told you so.

I know so much about this stuff because I got heat stroke and dehydration so bad when I was 16, I actually went blind for several hours. I have done everything in my power to never go through that again and to intervene so nobody else ever has to go through that.

So, I am not trying to be pushy, I just worry about everyone that comes to this climate and starts having obvious signs of dehydration.

ITRR: I'm going to WM today to see about buying an IV to hook myself up to for hydration here in AZ. UGH. If I have to drink 1.5-2 gallons of water, I'll just have to live on the toilet! My bladder is the size of a peanut as it is. But I'll do my best; I have zero sugar Gatorade in the fridge so I'll drink that too. And I'll try the copper.

Alva, I'll ask about Citrucel, although Chuck is adamantly opposed to drinking anything having to do with laxatives. Like 100% opposed, and he's a stubborn man.

Midkid; Chuck's issues pale in comparison to others' here, truly. We have one lady who's had 3 ERCP procedures (endoscopy to place stents in the bile duct), one of which has caused internal bleeding & hospitalization, the other caused what they think is a hole in her PANCREAS! She's now in the hospital again awaiting the results with another ERCP scheduled in 3 months time! Another man has had EIGHT stents placed SO FAR in his journey. That's two small stories out of dozens of ugly ones. And yes, prednisone is a miserable but very highly effective medication. I will put out the FLAG when his 4 month stint with it is over with. :)

I took a Benadryl last night (for the first time in ages) and slept like a LOG which I sorely needed to do. Then we both went back to bed for a nap and slept another 2 hours which Honey was all on board with. I feel human once again, thank God. Chuck's drop foot is improving, btw. The PT came to see him in the hosp yesterday & gave him some exercises to do with his foot; she also told him there is a small brace fitting for inside of his shoe that he can get before we leave (if necessary) that will help a lot w/o him having to wear the huge boot. Tues is the EMG nerve test which will reveal (hopefully) more of what's going on in terms of whether there's nerve damage or not. He's worried about being able to drive (it's his right foot) so .............

Lea, my gray hair went away, it is a pretty common solution for getting rid of gray. So yes, the odds of you getting your natural color back are really good.

As for the dry mouth, please get some electrolytes and drink more water. That is a sign of dehydration. I have found that alkalized water helps get you hydrated faster, it's easier to drink more of because it is hydrating at a cellular level. I honestly drink 1.5 to 2 gallons of water a day, especially since it's so windy and dry right now. Using sweet almond oil with some vitamin E and rosehip oil is really nice to keep your skin hydrated. You can use it everywhere.

I also carry a personal mister when I am going to be out and about, great refresh and hydration tool.

Stay cool!

Lea--

Your journey is so much like ours---we had 3-1/2 months of nonstop issues--and truly once he was titrated down OFF the prednisone, things were a LOT better. It's a wicked amazing drug. I got to the point I was cutting these tiny pills into 4ths...and then when I was literally giving him 'dust'. The last day of prednisone and I shouted for joy!! Of all the drugs, that was the worst.

And the on-off constipation--ugh. Poor guys, they're stapled from heck to breakfast and the last thing they want to deal with is moving their bowels.

We've known many liver transplant patients and each has a story to tell. NOBODY got out of it w/o a lot of side effects--but I have to say, my DH's journey was much 'easier' than a friend who has his in the 90's. He lived 36 years with his 'new to him' liver. Dh is 16 years out--and hoping for 20 more.

I think of you often. You are so smart to take breaks and recharge YOU! I did not do that and wound up really, really sick. All I needed was a lot of sleep, but I couldn't get it! You take care of you, esp when Chuck is in the hospital, being cared for.

Is Citrucel an option for Chuck. We used often in hospital and for me it works well when needed. Was recommended when I had diverticulitis as well.
It is digested differently than Metamucil, also the same fiber but the latter for many causes gas and consequent distress and bloating. Metamucil causes a sort of fermentation that can make social gatherings iffy, hee hee.
Might be worth a try but I do know EVERYTHING has to be passed past the docs at this point.

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.

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?? 🤣

Curlie not cutlet, stupid smart phone.

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.

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

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.

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.

((HUGS))

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.

Update:
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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 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
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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.

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!)

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

many prayers and hugs sent!!

Praying for both of you this morning.

Lea: Prayers sent.

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

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

5.26.22
Update:
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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.

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.