cxmoody Posted April 2022
Lealonnie and Hubby: Liver Transplant Journey
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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
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 😑
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.
https://www.pbs.org/kenburns/the-mayo-clinic
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.
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.
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.
Llamalover47/Nancy
We will be praying Lealonnie.
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.