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Lealonnie,
Happy Mother's Day to you and your daughter (s)!

You are doing a great loving act towards your husband, hang in there. And take a moment.
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Those danged steroids, so important in preventing rejection, have that double knife thing of letting infections in so easily. I know you know all that.
I am sorry about Chuck's kids, and I am afraid we show ourselves at our best or at our worst in these times of stress. Hang in there, don't let yourself get pushed by all that.
So grateful for your updates and I know we are all coming to "discussions" first these days looking for the updates. You are both in my heart.
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Mid; I'm fortunate in that the Mayo Clinic is 5 minutes away, literally. Visiting hours are 8-8 pm. It appears that Chuck has simple constipation going on WITH an infection of some sort which they haven't pinpointed the source of yet. His care is stellar and the team is hyper responsive to us; w/i 5 minutes an after hour call is answered, called back & handled. Having my DD the RN here has been very helpful too. Chuck's kids have been burdensome to me, the girls only.......refusing to read Caring Bridge and more concerned that my DD is here than how I'M doing or how their FATHER is doing! Ridiculous and something I have no time for at all.

On my way to the hospital now; thanks for the support from one who's 'been there/done that' and had a rough ride with less than great care for your DH.

Thanks to everyone here for the support, it means a lot.
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Thoughts from here are with you and Chuck Lea. I know you know that. I am thankful beyond anything for your Daughter's knowledge and expertise and that you are there with solid new friends who are walking this same walk. I know you knew all the possibilities you would have to face down, and Chuck did, too--you just didn't know which ones you would have to deal with. He was such a rock star with the walking, so if this is the dread bowel obstruction that so often comes to those with big surgeries in this area, it WASN'T his fault for sure.
Thinking of you, pulling for you both.
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Just sent up a little prayer for Chuck.

My DH had a massive post op infection. At 3 weeks out, which is when they usually raise their heads. He had a sponge left in him, which festered away. It was not pleasant, and he was far sicker than with the original surgery. I know we let it go a couple days too long, he just did NOT want to be in the hospital. A fairly straightforward operation and cleaning out the wound and he went on to slowly recover.

And, truly, for my DH, the fever (103) and PAIN were the worst. We struggled to keep him out of pain. I was amazed at how much Morphine, Dilaudid, and Fentanyl they can pump into the human body! And antibiotics of all sorts.

He did come out of it well, but was in quarantine for 1 week. In the hospital for 2-1/2.

It was really only a slight setback. He stayed on the regular post transplant meds and was able to taper down off the prednisone.

I have to say: your transplant team seems so much more aware than ours was. We were preparing to move to Omaha to wait out his transplant, b/c we never once felt that his transplant team cared one iota about him. Just one doc, thank goodness. I felt utterly alone and spent a LOT of time crying in an empty room b/c I felt that his post op care was so terrible.

Maybe that's why my SIL is a liver doc. He saw firsthand the poor care and my distress and felt it was a problem that could be healed.

The rough throat from being intubated will go away. The infection will be cleared. You are strong and tough and it will all be OK.

Lea-you get your rest and time outs. You have so much ahead of you--stay healthy and strong. I had to tell the nurses to not let my DH have his phone until after 7 am. I had to sleep and he would call me at 5 am, without fail, and want me back at the hospital to sit with him while he slept all day. Luckily, the staff would kick me out at 11 pm, DH would have preferred I'd stay overnight. The hospital was a 45 min drive from home. I was chronically exhausted, and that wasn't good.

Praying for you today that he feels better and they find the source of his infection.

Hugs-
MidKid
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Good health and healing, Chuck and Lealonnie!
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Many heartfelt prayers coming your way
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Lea, praying for healing and peace, peace, peace!

Also, I've been a long-time sufferer of vertigo (on and off since 1998) and had it daily for a full year after I had covid in May 2021 (it literally just went away 2 weeks ago). If your DD's fiance has nausea (most probably) I highly recommend asking doc for prescription of Ondansetron (Zofran) which is a tiny, dissolvable anti-emitic pill that will take care of the nausea for 8 hours without making him/her drowsy. Stay away from Dramamine or Meclazine, IMHO. Nothing addresses the dizziness but the constant nausea is the worst part. Zofran's only side effect is that it makes you a little thirstier.
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more prayers from here too!
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More prayers, more (((((hugs)))))
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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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Lealonnie - sending prayers your way...
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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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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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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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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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Praying in PA.
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Prayers n (((((((hugs)))))
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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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🙏🙏🙏🙏🙏❤️
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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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prayers!
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Praying!
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Praying here in Florida!
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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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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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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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cxmoody: Thank you for the update on Lea's DH. Glad that their DD can do the early morning appointment.
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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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Lea: Prayers for your DH's surgery and you.
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