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1pm Tuesday
May 3. 2022

Today is DISCHARGE DAY!

On a positive note, he had his Miralax Moment a while ago and it was a blessed event 🙏 


I am looking at a 30 page discharge packet which has 8 pages of 💊 meds and instructions including 15 days of Clinic appointments that begin at 6:10 am. 😳 If we miss ONE PILL ONCE, we have to notify Mayo immediately. Not too much pressure. Praying to God I can keep all of this straight in my addled mind and keep him properly medicated, fed, hydrated and get enough protein into him every day. I ordered shakes on Amazon and plan to hit Whole Foods later on. The tap water here is so bad the 🐕 won't eat her food that's soaked in it, so bottled water is on the list too. We're spoiled in Colo with such great tap water but no 🌴 so it's a trade  😉 

DH climbed the stairs today with the PT following close behind, what a strong guy he really is 👏 👌 💪 

We're planning to plop him in bed with his spirometer (I'm a spirometer Nazi, just ask him) a bottle of water and Honey next to him, for the rest of the day. Tomorrow he starts walking every hour when we return from the 3 clinic appointments.

Thank God for a successful Part One. Now onto a successful Part Two: The Recovery

Thanks for all the 💘 everyone. It means a lot
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Holy moly I got the hives just reading about the discharge responsibilities! So very glad for you two on this day and praying for many more of constant improvement (((hugs)))
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Geaton, and the prednisone dose changes every week, some pills have to be cut in half w the pill cutter, the color and shape of each I had to write down, put each day and AM PM into a Dixie cup, which sent me to Amazon yet again for a pill box. I'm cross eyed and going to sleep early w a 5am wake up alarm. 😐😐
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I am a nurse, Lea, and honestly just can't imagine this. I am so proud of you. I had a friend that was going to have lung transplant, and honestly could not do it because of no family. Friends tried to get up a schedule to be with her and handle meds and they basically said "Nope, not good enough. To complicated". And I surely can understand that now in terms of the medications alone.
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5.4.2022

9am Wednesday

Just got back from clinic, lab draws and DH’s first doctor visit which went perfectly. Dr A is thrilled "speechless" by DH’s progress and said he looks like a patient who's been home a MONTH rather than a day! His scar is so clean and looks so healed that the doctor said he was tempted to take the staples out on the spot.  😂 

The old liver looks terrible BUT no additional tumors were found inside of it, or in the blood vessels, which is remarkable and a huge relief. Had more tumors been found, that would've meant a greater chance of the new liver acquiring cancer ALSO and very close monitoring a necessity for years to come. Another huge blessing to be very grateful for. 

Clinics happen 2x a week with an ultrasound on Friday. Blood draws are vital to see if medication changes are required which we'll be notified of before the 8pm dosing. So far so good. 

DH’s appetite is poor and his pants are already falling off of him. I'm running around like a chicken with my head cut off, no appetite either, sweating bullets, and the scale hasn't BUDGED an ounce. Isn't this just typical though? He'll lose 20 lbs during this run and I'll be lucky to lose 6 ounces 😑
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His new name is Superman Chuck! (((((Hugs))))), Lealonnie!
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Lea, I'd also like to think a tiny bit of Chuck's exceptional outcome so far is a little Mayo Magic (and a lot of YOU, of course)... just MHO. Keep on truckin'!
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Geaton, I agree with you about the Mayo Magic.....this really is the most incredible campus with exceptional doctors/nurses/techs, etc. It's so streamlined & efficient, it's hard to put into words the level of care we've experienced here. So yes, everything has come together to create a great scenario for us, so far. Of course, anything can go wrong at ANY time, and that's what the blood draws are for; to see if there's signs of rejection or complications in the biliary ducts. If such a thing happens, then other surgeries/procedures/med changes/tests have to happen stat. It can get quite hairy when that happens, too, I've seen it firsthand. So fingers crossed that if/when the complications do come up, they're minimal and fixable.

Alva; thank you. Kaiser won't allow a transplant patient to come here w/o a family member as their primary CG either. Period. It's way too much to deal with, even for the family member, never mind a casual acquaintance or friend. Sheesh......they'd go running for the hills! Just today, his clinics started at 6:20 am and went back to back till 9:15 am, were in 2 different bldgs that had to be driven to, parked at, him left off at the front door, etc. It's a lot. And there were no med changes today; had there been some, I'd have been called back to pick up RXs and re do his new pill box which came today THANKFULLY. They're individual days of the week boxes that you can take out of the case, and are divided into 3 parts, AM, afternoon and PM. Heavenly. LOL.
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Lea, "in all your free time" if you haven't seen the Ken Burns documentary on the Mayo, it is excellent.

https://www.pbs.org/kenburns/the-mayo-clinic
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Lea: Prayers for your DH's surgery and you.
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5.5.22

DH’s voice is improving with drinking hot and cold beverages so we're hopeful to avoid the ENT treatment next week. His vocal cords are inflamed from 12 hours of intubation, so that's where the voice issues stem from. Steroid treatment would resolve the issue, if necessary. 

Tomorrow DD will take DH to his clinic appointments and for his liver ultrasound. Which is good because it's at 6:10am 😑 

Did I mention I'm not a morning person but apparently this Mayo clinic IS a morning thing? Actually, things in general get started earlier here than in Denver likely due to the heat. 

Grateful to Whole Foods for their amazing 👏 offerings to keep us stocked up with healthy fresh foods during this recovery time. But no grapefruit, Seville oranges or pomegranates which are a no no for transplant patients.
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cxmoody: Thank you for the update on Lea's DH. Glad that their DD can do the early morning appointment.
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Lea: Hugs to you tonight. I wasn't finding this thread by cxmoody started on 4/23 until a few days ago. Prayers for your DH, you and your DD.
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Lea, speaking of Whole Foods...a few years ago I stayed with a friend and her husband who were temporarily living in a freshly built apartment bldg in downtown Denver. It was above a Whole Foods and had a dedicated elevator to enter it. It was such an awesome arrangement to be able to just go downstairs and get whatever you needed without going out into the cold or when driving was a problem. The cooked meals smelled heavenly. Would be awesome concept for senior living, if it doesn't already exist.
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May 6, 2022
Journal Entry Caring Bridge
Friday — 16 hours ago

Today is one week post transplant for Chuck. His labs were somewhat wonky this morning; so one change to his medication is necessary, at least for today. He also had a liver ultrasound this morning.

The roller coaster is about to begin; he's scheduled for another lab on Sunday, an MRI on Tuesday and another ultrasound with a liver biopsy may be required (it's scheduled) afterward, based on the labs and the MRI findings. When the labs show higher liver enzyme numbers, biliary duct issues could be the problem. A biopsy would be further indicative of what's going on.

Complications are almost guaranteed to arise, but the Mayo Clinic has plans in place to deal with all of them. I had a bad feeling last night and didn't sleep well at all.

Prayers are helpful, so please send them.
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Praying here in Florida!
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Praying!
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prayers!
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You are right Lea, on the roller coaster begins. You knew this would be a ride. I trust you to take it a day at a time. You are both VERY well informed and have your daughter's help as well. Thinking about you so very much.
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🙏🙏🙏🙏🙏❤️
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5.7.22 Please pray.--Cxmoody

3:30 pm: Today has been a very rough day for DH; GI/stomach issues and gas have been plaguing him all day; got the green light from the team to give him Gas X which has only helped minimally. He's only eaten a little food this morning and had 1 protein shake, and maybe 8 ounces of water which is the real problem here. He's taken a pain pill about 10 minutes ago, finally; we're giving it 30 minutes to work. If he's not able to drink water by then, I'm calling the team back to see if he needs to be brought in for an IV or to be seen/evaluated for what's going on.  

I'm glad to have DD here. Her fiance has tested positive for Covid & is suffering alone at home with very bad vertigo today. She tested negative, thankfully. Asking God to PLEASE help him manage his symptoms. His doctor approved the anti-viral pills that are Federally regulated right now, and his insurance approved them for pick up at the local pharmacy. His parents are getting them and supplies as needed which they can drop off at the front door (so they don't get exposed). 

The pain pill did NOT work and DH’s pain is intensifying. I put in a call to the after hours NP who said to bring him into the ER to be seen for a possible bowel obstruction. DD is driving him over now (1 person can visit/accompany a patient only). She'll keep me informed.
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Prayers n (((((((hugs)))))
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Praying in PA.
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Sending out my prayers that everything gets resolved with his pain and there are no further complications and this is only a minor setback.
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Lea: In deep prayer for your DH, Chuck. I hope that he got some relief from the gastrointestinal issues and a different pain medication can be tried. Also praying for strength for you. That has to be quite difficult. As an individual who did have to have twisted bowel surgery in '02, I know how crucial that is, albeit of course not the same. I also hope that you were able to sleep somewhat. Will check back on this thread later.
Llamalover47/Nancy
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He's been admitted. White blood cell counts very high. Tests aren't indicative of WHAT'S going on and they can't manage his pain well at this point. 😐
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You are still in good hands at the Mayo Clinic. Sorry for this change.
We will be praying Lealonnie.
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Lealonnie - sending prayers your way...
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6:50 PM:
DH’s being admitted. His white blood cell count is high (liver enzymes is LOWER than yesterday though); so an infection of some kind is going on. 1/2 mg of Dilaudid did nothing to ease his pain, so it's being increased by another 1/2 mg. CT scan has not been done yet, but on the schedule. They are still thinking it's a bowel obstruction based on symptoms. He does not meet the sepsis criteria, but I'm GLAD I called the Mayo when I did so it's been warded off. One of our neighbors was admitted for sepsis a few days ago and it was an ordeal (he's ok now & being released tomorrow.)
This is hard. Watching DH in pain and losing 20 lbs in a week. I knew it would be a wild ride, but to actually go through it and feel helpless to 'fix' it is tough. The support group here is awesome and my neighbor a few doors down, Winnie, is wonderful. It's her husband who's in the hospital now dealing with sepsis. 

We'll get him through this. With Mayo's help and God's help, and your prayers, family & friends. I feel encouraged that his liver enzymes went DOWN, that is good news in my book.
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More prayers, more (((((hugs)))))
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