Lealonnie and Hubby: Liver Transplant Journey

Lea, one thing I do recommend that you guys do before you leave Arizona, go have a mesquite grilled steak.

You will be happy with the window shade, glad you found one.

So glad to see that the lab numbers are good so far! 😀

Been praying for you guys!

So happy and grateful for this great news!!

5.16.22

9:00 pm
I forgot to mention a strange thing that happened today at the hospital. There were a lot of birds outside of Chucks hospital room window chirping VERY loudly for a long period of time. His window didn't look out into an open space either.....it was a breezeway type of location with no trees or a place where birds would normally be. We both noticed the chirping and were talking about it, surprised it was happening.

About 30 minutes later, his nurse came in and remarked that there were so many birds chirping so loudly, she'd never heard that before! I told her how it was significant to us because Chucks hobby is bird photography! Which led him to show her some of his favorite shots on his phone, which she was oohing and aahing over. I'll post some of them tomorrow. 

Another bit of what I believe to be synchronicity and a sign all is well from above. A lovely farewell from nature to us on our way out of the hospital this afternoon.

Sleep well everyone, I know we will 😊

So glad your hubby has been sprung from the hospital!

What a wonderful bird story. I think that is a great experience with real meaning. I find myself looking for spiritual guidance and just feel alone. Happy for you though

Riverdale: look for 11:11 and 1:11 on the clock.....if you have digital clocks. I have found that when I see those times, the angels are with me & I know things are on the right track. Look also for pennies and dimes on the ground or on the floor; it's again the 1's or combination of the 1's that mean the angels are with you.

5.16.2

3:30pm
Showered, shaved and feeling much more relaxed and like himself than yesterday. :) 
New flip flops on board, wash done, cookie dough milkshake 😋 in DH’s stomach, it's all good.

LeaL, I will try that. Personally for a variety of reasons I never liked the number 11. My last flight home last week was a flight 11 which made me a bit nervous but the flight was fine. One of the tragic 9/11 flights was a flight 11. I lived in NY at the time. I always felt odd because it seemed I often looked at a digital or car clock and 9:11 would be the time. Everytime I fly I think of how horrific it must have been for the passengers on those 4 flights. Anyway enough with morbid thoughts. I will try anything positive.

Forgot to add. I am always looking for money on the ground and think nothing of picking up a " lucky " penny even if in mud ( but not beyond that )!

Lea and cxmoody: Glad that Chuck has been discharged. What a wonderful bird story!

fantastic he's been discharged!! :)

Riverdale: here is a link to one of many articles on the spiritual topic of 111 and 1111s :

https://thehabitat.com/life/the-spiritual-meaning-of-angel-number-111/

Google it.

My neighbor was Jason Dahl, a pilot on flight 93 on 9/11 who's son Matt was my son's friend and classmate. We personally lost a friend and part of our neighborhood that awful day, so I get it. That day affected the whole world. But it does not change the spiritual significance of the 1s.

lealonnie1....oh those numbers.... I hope the angels will be hanging around as I go through the caregiving journey. It was an awful weekend here.
My time of birth 1:11 pm.
Otherwise, I am so sorry for the loss of your friend, Mr. Dahl. I grew up an hour from NYC, and that day is forever etched on my memory. Do tell his son, if you are still in contact with him, every year I watch the 9/11 memorial service and every year I cry. Let him know we haven't forgotten.

5.17.22
1:00 PM
DH had 3 appointments this morning, 4 if you count one with the NP to remove his DRAIN, YAY! DD was able to meet Dr Aqel (the head of the transplant dept) before she departs for Denver in a couple of hours. He wants to meet Honey and give her a certificate of service for all the comfort she's given us, so we may bring her to his next appointment in the new carrier I ordered from Amazon the other day. 
DH is looking pretty good and feeling pretty GREAT today! We haven't gotten a call about changing his meds, so they may be okay for now. He's also been given the green light to 'burp and fart' all he wants; it's okay and encouraged around here. 🤣 The only thing he's in need of (still) is magnesium, so he's been told to take 2 tabs orally each day. I'm working on getting CALORIES into the man along with 3 high protein shakes a day which is crucial for recovery with a liver transplant. I've ordered 3 different types from Amazon; 2 juice box types and 1 chocolate Muscle Milk type, for taste/texture variety more than anything. His appetite is still kind of 'off', so we're working on small and frequent meals throughout the day.
The doctor said, if all goes well, the staples will be removed from DH’s incision on 5/31, two weeks from today! The incision is healing beautifully & the nurse questioned where the second surgery scar was, THAT is how clean it is and how well done the procedure was, thank God. If no further complications arise, we may be looking at going home in early June. We won't worry about that now, just continue taking things one day at a time here. 
We have a family here who's originally from Bangladesh; the son & daughter are the caretakers for their mom who's had a liver transplant. They cook a LOT of Indian dishes daily, too. So last night I winked at Deepa the daughter and said if she had any leftover lentils, I'd be more than happy to take them off of her hands. About an hour ago, there was a knock on our door; it was Deepa with a whole bowl of lentil soup for us, which we're getting ready to enjoy now! How sweet was that?

And speaking of Amazon, I apparently 'need' to place at least one order per day from them while we're here so today it's shoe/boots for Honey due to the extreme heat of the concrete and gravel in Arizona. They're pink and I'm sure she will despise them. Which won't stop me from taking lots of photos and posting them here for your amusement!
I'll update again later.

Ariadnee: I grew up in New York, born & raised. Had family members at work near the World Trade Center when 9/11 happened. It was a day that will live in everyone's memory forever. I got to visit the memorial in 2008 when I went back to NYC for my half-sister's wedding. It was quite a sight to behold.

Jason Dahl's wife Sandy died in 2011; she'd moved out of the dream house they bought together shortly after they'd gotten married. I think she was 52 years old & fought hard to keep the heroes memories alive. That house held too many memories for her, understandably so. Oddly enough, Jason was our neighbor when the kids were little (with his first wife) and then again our neighbor after the kids were grown (and he'd married Sandy), in a different subdivision of the same neighborhood. Jason had scheduled a piano delivery for shortly after his untimely death, to be sent to their house in honor of their anniversary, which was the final straw for her I think. That & the flowers that bloomed *which he'd secretly planted the bulbs for lining the front walk to the door* She then put the for sale sign up shortly afterward. Our sons are now 37 and don't keep in touch anymore, at least not to my knowledge.

WOW, I think it's awesome that you were born at 1:11 pm!! You have your guardian angel sitting on your shoulder all the time, I guess! How cool is that? :)

A good friend of mine, born of the same name, was due to fly out of Boston to California on America Airlines flight # 11 on that fateful day. At the virtual eleventh, Raytheon canceled her flight, saving her life.

Llama; amazing what happened with your friend's flight being cancelled, huh? It just reinforces my opinion that when it's your day to go, you go. When it's not, something happens to prevent it. Like it did with your friend; her flight got cancelled. Goosebumps, right? :)

Lea: It certainly was! It was my mother who relayed the story to me about Nancy, whose mother was my mom's best friend. I had left the state of Massachusetts, but remained friends with Nancy, though we were both busy with careers and families.

The surgery itself is not as dangerous as to what is coming next. The battle has just started and it will last many months. First, to see if the transplant is not rejected. Also the drugs use to reduce rejection of the graft, do open de door to possible infections. Dangers are not over yet. The next several months will be crucial.

Wow, TChamp, you're just an effin' little ray of sunshine, aren't you?

I imagine that *The Mayo Clinc* explained ALL of the procedure, including the rehabilitation - risks included! - to Lea and Chuck long before the surgery.

Why can't you just acknowledge that, so far, this is going better than they could have hoped for, and be happy along with and for them?

Notgood enough, I don’t think tchamp is being not happy that Chuck is being discharged. The fact is however that Chuck is coming home presumably with a list a mile long so it’s good for anyone in that position to be prepared for any needs that will then arise.

Sorry Peggy, I don't know that I agree with your assessment of TChamp's intentions here, given his/her usual doom and gloom posts that all sort of come out to the same conclusion - that death is inevitable (which it is) so there's no point in trying to do anything to either postpone it or to make it more comfortable. And I don't think I'm the only one here in this forum who has this feeling about TChamp's posts. I tend to try to ignore his/her unhelpful messages, but I couldn't let this one go by.

I think too early discharge from the hospital is common problem across this country; however, it seems in this instance that the Mayo Clinic is providing stellar support to it's patients AND their families; not to mention the support network that Lea has described between the family members who are/have LO's who are receiving treatment for organ transplant. Not to mention that all of TChamps posts are things that Lea has acknowledged in her postings about her husband's transplant journey.

I think that this has been posted under "discussions" rather than "questions", that Lea and Chuck have a pretty good handle on what happens next, and could probably use a little cheering rather than doom-and-gloom postings. I think if D&G is your mindset, a caregiver support forum is probably not the best place for your participation.

Please note that while Chuck has been discharged from the HOSPITAL, he's still close by to Mayo. They are not returning home until next month.

I do often wonder where TChamp gets his medical and psych information from. It is mostly wildly out of date.

They don't let you go home from the hospital until you show you have perfect understanding of the post op care!

That means, among everything else, someone is acting as a 'chart nurse' making sure that all meds are given at the appropriate times and doses. Vitals are taken & recorded. Tests are run 2-3 times a week with a FU clinic day one day a week.

Yes, it's grueling and scary, but we have seen so much improvement in the
bettering' of post transplant care in 16 years!!

Being negative and down are not helpful at all. For the love of pete! no transplant patient went in to a transplant without knowing there's a lot of bad stuff that can happen. BUT--you focus on the good and pray for the best. But prepare for problems, as best you can. Be realistic!

MY SIL is a liver transplant Dr. (not a surgeon, a post surgery hepatologist). He's often said that the attitude one carries into surgery carries them through. People with good support systems do better, overall. No surprise.

DOCTOR TChamp I also ask that YOU stop commenting on this thread. Your comments are useless and horrible, as usual, and I have no head to deal with YOU on top of all the rest of the sh*t I'm dealing with. A-holes and their misinformed BS fall really really LOW on my list these days. All doom & gloom all the time. I don't know what rock you crawled out from under when you showed up around here, but I sincerely wish you'd crawl back under it and get lost. And I know this may sound foreign to you, but LOVE will get both of us through this transplant! As it does 95% of the people who go through it. Those are the stats at the Mayo Clinic for successful transplants. I will stand by Chuck throughout ALL OF THE trials & tribulations that await him, and we'll get through them together, one day at a time.

From Caring Bridge today 5/19/22:
12:00 Noon
Chuck had 5 appointments today, as it turned out. Labs at 6:50 am, nurse visit at 8:15 am, doctor visit at 8:45 am, where he revealed a swollen and sore arm from a blown IV during his last hospitalization which has gotten worse the past few days; it's sore and painful. The doctor sent us to the other Mayo campus 20 minutes away for an ultrasound which revealed a very large blood clot which is pretty superficial (not deep vein), thank God. Since the clot runs from his wrist to basically his elbow, the doctor has prescribed Eloquis, a blood thinner, for 3 months to get rid of it. He'll need another ultrasound in Denver in 3 months time to see if the clot has dissolved, and we'll go from there. Around here, we take things one day at a time, literally. Although this may qualify as a setback or a complication, it's minor in the grand scheme of things; his new liver is doing well and THAT is the main takeaway.

When I told the ultrasound tech we have a 7:30 am appointment tomorrow morning for a liver ultrasound in the same location, she said she had extra time today and did the scan right then & there. Score. Tomorrow Chuck will have only 2 appointments; one at 10:45 am with the social worker, and the second at 12:15 pm with the nutritionist. 

His blood work numbers are all good, except for the one anti rejection med which doesn't come in until this afternoon, and would only require a med adjustment in any event. His liver numbers are on the rise with each lab, which is a good thing & shows us the new liver is working to do the job it was intended to do. 

I'm working to get Chuck to drink enough water and to eat enough food on a daily basis. His weight went UP a few ounces today which is a WIN! We have to be very careful about ordering food out and making sure his food is cooked thoroughly to avoid food poisoning and/or bacteria getting into his body. Taking so many drugs that make his immune system compromised means that extra precautions MUST be taken on all fronts. The Valley Fever situation is murky; there is no one sure-fire test that will confirm it in the body. So extra (anti-fungal) meds must be taken for the next year in an abundance of caution. He'll still be referred to the Infectious Disease doctor for consultation at some point in our stay here.

Time for a nap now before I go pick up his new prescription and then go to Whole Foods to pick up some supplies for the fridge.

************************
Thank you to all of you who have chosen to leave positive and upbeat/loving messages/comments. I appreciate it.

MidKid, spot on. There is a saying around here: the way you walked into the Mayo Clinic is the way you'll walk out. Chuck walked in healthy & full of piss & vinegar, which is the way he'll walk out of here, God willing.

I have no idea where anybody got the idea Chuck was being 'discharged' from care here! His staples come out on 5/31 if all goes well (as of today, he's healing beautifully). IF nothing else goes wrong, he COULD be released from Mayo care on the Arizona campus in early June. Meaning, we go back home to A LOT OF CARE FROM KAISER, which is monitored BY MAYO. Chuck is a patient of Mayo for life now; comes back here at 4 months and 1 year for a battery of tests, and then annually for LIFE. Kaiser takes up the interim care in the meantime. At first, labs are drawn at least 2x a week at Kaiser, sent to Mayo, and they collaborate on Chuck's care moving forward. Make no mistake; he's never 'discharged' from care by either Mayo or Kaiser!

Lea, I am sorry to hear about the blood clot. I always worry about blood thinners. But when these things come up there is nothing for it but to deal with it and go on. ANYONE here who has dealt with illness knows the drill as far as complications, and the necessity of dealing with them. You have been realistic and well informed as well as positive and steady as you go. I am so thankful Chuck has you and the wonderful daughter as well. You are a great support system.
Day by day and as you say, a roller coaster. But all in all everyone is doing so great with all of this. I know you all fall into bed exhausted each night.
I look for you first thing in a.m. and last thing in p.m. and I know we all do; so many are in your corner.
If ANYONE knows what you are dealing with the three of you do--Chuck, you and DD. And you could likely at this point teach a seminar, write a memoir. Our love out to you.

I’m so sorry about the blood clot as well! Ouuuuuch!

I am heartened by the experience you’re having at Mayo. I did a couple of days with them last year, and it was a PLEASURE. Sooo efficient! I’m glad they are giving you such good care!

Lea, so happy that the blood clot isn't a DVT.

On a different note, did you get your doggie shoes? Were you able to get your little princess to wear them? I have never had any luck getting them on the 2nd time. My dogs are not the least bit willing and they are to big to force those babies on. So I was curious if your girl was as hilarious with them on as mine.

May The Lord touch Chuck's arm and heal his body, may HE give you both strength, peace and comfort.