cxmoody Posted April 2022
Lealonnie and Hubby: Liver Transplant Journey
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My thoughts are with you and I am always hoping you find the strength you need in dealing with your husband's recovery.
I have had 2 bowel obstructions. One required surgery and the other resolved itself. The tube down the nose is incredibly unpleasant. I hope your husband finds relief soon. Always thinking about you. I leave for home today after a week at a pace that really made me feel I was entering a phase of dementia.
4:45PM
DH is out of surgery & did very well; there was a duct leak b/c the donor was very young & had very small valves. It was repaired w/o the need to divert the ducts; his infection was cleared up, and he's expected to make a full recovery.
2 drains were placed again in his abdomen and will stay there for a week this time.
He will have to pass the stool himself but the doctor doesn't see an issue with him doing that on his own now that he doesn't have a serious infection going on.
DH will probably be in the hospital for an additional 5-7 nights so they can make sure he fully recovers.
Thank God this is behind us now. Thanks for the prayers and well wishes, everyone. We appreciate it.
The NG tube indeed was the worst part.
I am praying with great understanding for you both.
Glad that Mayo found the problem and fixed it, and that Chuck will be in the hospital until everything is in good working order. Hope you can get some rest yourself, so you feel better, too.
Keep those stool softeners on board whenever possible. They are an enormous help in preventing the cemented bowel.
12pm Wednesday
DH is feeling quite a bit better after the surgery last night. His NG tube got clogged and had to be removed/ replaced so the doc said he could leave it out for an hour, to take a break. During that time he walked 2 laps around the hospital 5th floor! Not much pain at all, fortunately. He is not allowed any food or drink due to the NG tube which will be in for the next several days at least. The tube will continue to pump fluids and bile from his system. The doctor is very happy with his progress so far.
He had an ultrasound this morning. No news on the results, but no news is good news around here.
He's refusing narcotics so the doc okayed a dose of IV Tylenol which is about $1900 a dose, stupidly, and something they HATE to prescribe. The last thing he needs is more constipation from narcotics though.
The doc said it will take a couple of days for his bowels to start working again so let's hope for the best on that.
DH’s spirits are pretty good considering he can't eat or drink 🤔. He now has 2 more stuffies to add to his collection....a dinosaur that heats up in the microwave and a jackalope. We all get one for each time we're admitted to the hospital. Let's pray for NO MORE stuffies to be added to this collection.
I will update later if there is anything to report.
The NG tube is back in and Chuck is snoozing on the recliner presently. A biopsy was taken during surgery, it shows no sign of rejection. The EKG is good, all other tests are looking good too. Potassium is high and Lasix is in the IV now to bring it down.
Feeling grateful today.
2 tries it took the nurse this time to put in a new NG tube, then she tried to get him to take PILLS with water beforehand at the PA's suggestion which is ludicrous. When the PA mentioned it to the doctor (after DD & I balked about it), he looked at her like she had 3 heads; Chuck is not allowed to drink or eat anything which includes water, so why would he be allowed to swallow pills by MOUTH? Mayo Clinic or not, an ADVOCATE needs to be with a loved one as much as humanly possible when they are in the hospital b/c a LOT of mistakes happen. That's my take away from all this.
Chuck has not been complaining at all about the NG tube, actually; it's not bothering him much except the installation of it, and two tries doesn't help, and three installations now in all. Hoping that there are no more 'clogs' and this one can stay in for the duration. The man is literally exhausted, can't keep his eyes open, has had no food or drink at all since Friday, and no real food to speak of for days before that, so I'm not surprised. I don't know how he's doing it, frankly. Once the new NG tube went in finally after 7 HOURS w/o one, it pumped out about 200 ml of liquid from his gut which wasn't too bad, fortunately.
Hoping for a good day tomorrow and more good news to follow. DD and I are exhausted; and she's rooming with me now b/c her hotel room week has come to an end today.
💩🚽💩🚽💩🚽😀😀
Here is another stuffie to add to the collection! A well timed gift from Chuck's son and daughter in law! How hilarious is this??? An appropriate reward for a job well done!
HOORAY!!!!
Stool softeners I meant for any pain meds when he is having to take the pain pills, all of which are constipating.
I do worry about passing the stool only because longer in the bowel the more water removed BY the bowel and the harder the stool gets. Many disimpactions get done in ER; I know your daughter will be up on all that.
Sounds he is being his usual heroic self and this is all "moving along" and I hope the stools keep doing the same.
Wish I knew what the stuffie is, but I have some guesses.
We are all thinking of you all.
Glad they found the infection and got it all cleaned up and that DH is feeling better.
He's listening to music again and the transplant doctor told him that was the same album HE was listening to during his Surgery! Syncronicity at its finest along with the phlebotomist's late husband being a schoolmate of Chucks from the same high school! He knew all the people she mentioned from 40 years ago, which was an odd surprise.
SD responded to none of my texts and did not call me back when I left an URGENT voice mail about her dad the other day. So that's that and I'm done trying to hold out an olive branch. His other daughter will update her. Which is pretty pathetic for someone who pretends to care so much about her father. Sad. She's moved to a state where she's now not speaking to any of the family members who live in the state she moved to so she could be close to family for. She speaks to one brother who won't visit her bc he hates her DH ....who may not be as horrible as we all thought he was after all. Life with SD is more than likely a nightmare, so who's to say?
Anyway, things are looking up for now on the recovery front. My dogs BFF is going home today which is good news for the humans but bad news for the canines 😏. DD is trying to convince me to adopt a dog here in AZ so Honey will have a playmate and I'm like NO WAY NO HOW. The girl is insane. Lovable but batsh*t crazy. 🤣
As to Chuck, wonderful wonderful wonderful. He is an amazing rock star patient. Just great news.
Thanks for description of that stuffie. Kind of what I imagined.
As to the "other" SD, I am thankful she is off your plate Lea and onto the plate of the poor other stepdaughter. She is someone who cannot get out of her own head even in a crisis and that means there's NO ANSWER to that, and active as you are here you know the type. I am grateful she is off your plate. Encourage that to continue.
Thanks for your faithful updates to us all; I know the thoughts of this entire Forum is with you two so very much.
430pm Friday
DH is doing great and feeling well. One drain was removed this morning, the one remaining he'll be discharged with. It will stay in until Wednesday or Thursday and be removed in clinic.
He's eating solid foods today and happy to do so.
DH feels excited that things have turned the corner in his recovery from this setback and happy to be discharged on Sunday, hopefully.
He's in high spirits and joking with the doctors and staff, making him a favorite here.
The doctor said today it was very odd that he presented with THIS level of illness with only abdominal pain. They were surprised to find such a serious situation with the bile duct leak and surgery was the right answer. Any other procedure would not have fixed the problem, just prolonged the necessary surgery.
Over and out until tomorrow
Anyway so happy for your well deserving positive news. I know you will prevail and I wish you many better days ahead.
1PM Saturday
Just got back from visiting DH in the hospital (DD& I are taking shifts). He's doing great & feeling quite well, albeit tired & a bit weak. He's walking the hospital ward 4x a day as of today & only feeling a bit winded afterward, due to the mask requirement more so than anything else. He's eating a regular diet and enjoyed an assorted fruit plate this morning with his mushroom/onion omelete, so that's a big *and welcome* change. Discharge will be tomorrow, barring anything going wrong.
I don't think anyone could have prepared us for the emotional rollercoaster this journey would truly be. It's helpful (now) to have the other Kaiser transplant patients here to speak with & to meet with at 6 pm nightly. There are newcomers now who are awaiting livers (and some are also awaiting kidneys for double transplants), and some that have gotten their livers and are in the recovery phase in their first month. There is one man who's here with his wife & stepdaughter from California who's having some pretty terrible complications and just yesterday was taken off of the ventilator (after 9 days) and given a tracheotomy instead. What these two gals are going thru is very emotionally draining, and we are all hoping D is able to rebound from this setback; he may be going off to rehab soon, we're not sure.
Another newcomer has such bad ascites that his stomach looks 9 months pregnant. He's having the fluid drained all the time & was given a fistula in anticipation of dialysis. Just yesterday Mayo told him he'll be transplanted any day now!!
The level of illness some people are at is mind boggling. The Mayo saves lives and we're here to witness that first hand which is so incredibly humbling of an experience, it's hard to put into words. Some people don't even get the opportunity to come here; some people have liver cancer that has metastasized to where they have to be told no, we can't help you, go back home. Yet we were given the gift of a new life for DH
Transplantees name their new liver and celebrate a birthday on the date of their transplant. Because it's a new life they were given on that day. One man, J, went home yesterday after being here for 2 months, successfully transplanted with a new liver, and with a whole new lease on life. He's decided to get into ministry work where he can give back to others and share his blessings in life. He's charged with a new attitude and a joie de vivre his wife said he's never had before now!
God works in mysterious ways and even in spite of all the stress and emotions that run high here, this is a magical place. We are very overwhelmed and grateful for this opportunity at a second chance at life for Dh actually, a third chance.......the second one came when he had his triple bypass done in October of 2020. We won't waste this chance at a new life and will celebrate every precious moment we have been given.
I learned quite a few things myself the past few weeks: that I can live quite comfortably in a 450 sq ft space; it's the love that exists within the 4 walls that make a home, not the contents therein or the amount of space one has. I grew closer to my daughter who has held me up while I've cried, and supported me during the most emotional time of my life. I learned that she is a very strong woman and a pillar of strength in addition to one helluva a nurse. I learned that 102 degrees of very dry heat is still really really not, but not unbearable. I will learn what 120 degrees of very dry heat feels like next month and report back to you what that feels like. :) I learned that life is way way way too short to hold a grudge or resentment or anger inside. Let it go and say I Love You more often. It feels good to do so.
Thank you for all the love and support you've shown to us along the way thus far. We are also grateful for that and for all of our loved ones who are going through this with us.
You probably know these things, so no offense intended, with this high heat it is really important to be careful of your dogs feet. They can get burned pretty quickly. I use the test of putting my toe on the ground, if I can't comfortably hold it for 5 seconds, it's to hot for paws.
Be sure and stay hydrated. Using an electrolyte tablet is a good way to keep yourself from getting depleted. You don't notice how much you are sweating when it is hot and dry. Evaporation happens faster then we sweat here :-)
Emu oil is really great for sunburned skin. Of course, fresh aloe soothes the heat but, emu keeps you from peeling and heals the skin, super hydrating. Take extra vitamin c, it helps you not get burned.
You are in for an experience for certain. My favorite thing is to hit the pool when the sun goes down. Refreshing without the baked bread effect.
Oh, be careful to never leave coins where you might inadvertently sit on one that has been in the sun, you will get branded.
Leave your car windows slightly cracked, the heat can cause enough pressure to blow your windshield out.
Keep your eyes hydrated. This is a real issue in this climate. Your retina can separate from your eye. Natural tears and oral hydration will keep this from being a problem.
Carry something cool to drink everywhere you go and keep extra water in your car.
I am praising The Lord for Chucks journey, the blessing of early detection, an available liver, an awesome team for care and all the love and prayers. HE is so good.
May HE continue to keep HIS hands on everyone and everything during this journey.
I have a tan steering wheel and I can't touch it when it's been in the sun. I can't imagine how hot black gets. Ouch!
My own daughter at 60 has become my "wise woman". It is such a shock, really, to raise your child, to think of your child as "the child" and then to come to learn that they are full grown, and have become very WISE, your rock you can lean on. I know what you are experiencing in your recognition of your daughter. I know EXACTLY what you mean.
Chuck continues to be the rock star. He is so very brave. Want to see him in a marvel superhero suit.
I'm glad he stayed the extra day.... he wound up needing iron and an IV bag of magnesium today. Otherwise, ALL OF HIS LIVER numbers are excellent.....!!! Labs will be drawn again on Tues and Thurs am. Labs are drawn to see if the liver is rejecting or if bile duct constriction issues are cropping up which would require an endoscopic procedure to place a stent temporarily. Rejection issues mean med changes and monitoring. Mayo stays on top of these labs religiously.
ITRR....I also bought a window screen/ sun visor for the car as you suggested. 😃