Lealonnie and Hubby: Liver Transplant Journey

Lea: Thank you for your wonderful update on Chuck, yourself and your family. I am always in awe when I see you responding to posters and you excel Every.Single.Time! That's even when perhaps you may be on your last ounce of strength! Truly, your story and Chuck's is extraordinary.

Lea - Thanks for your update. So glad Chuck is making good progress.

I think I got a little dizzy reading about all the things that have been going on and things that you/Chuck have to keep tab on. Oh my!!! One thing for sure, you Lea are pretty sharp mentally to handle all of these.

I’m so glad that Chuck is doing so well! Such a blessing for you all. I’m glad you have such a good support system!

Alva; we have a man in our support group who has FINALLY come home to Denver after 14+ months of being in care at the Mayo in Phoenix, getting 2 livers; the first rejected and it was looking like #2 was as well, until one day things turned around and he started doing well, thankfully. We will be getting together with him and his wife, and another couple where the DH successfully transplanted about 6 months ago, also in the Denver metro area, soon for dinner! Such a great experience to be part of a support group of fellow transplantees!

Lea, we are so grateful for your updates. It sounds so good to me. I know you are more easing into being away from the immediate help of those who are so familiar with transplant. Coming home is WONDERFUL, but also a bit scary. You have adjusted now and it sounds like Chuck is doing so very well. He has maintained such a good attitude throughout; you ALL have. Just so happy to hear this news.

Hi PB. I updated CaringBridge yesterday, thanks for thinking of us! :)

Chuck had an appointment yesterday with his Hepatologist (liver doctor) here in Denver and she was very happy with his progress & the outcome of his transplant. She'd like to see him again in about 3 months time for a follow up.

His blood pressure has been great, he's gained a couple of pounds as his appetite returns slowly but surely, and his energy levels are getting better too. The drop foot has improved quite a bit to the point where he's driving again, which makes me happy because I hate hate HATE driving downtown Denver. 😆

His medications are being managed by Mayo, and will be for life; so are his blood test results which happen weekly. If med changes are to happen, Mayo will notify him directly. The good news is his kidney numbers are doing fine, and his liver numbers have been steadily looking good. 

He will be permanently finished with one medication in 2 weeks, finished with Prednisone in less than 2 months time, and a few others will drop off here within a few months. We are hopeful to be finished with the blood thinner in August. He will have a blood test and ultrasound in late August after being off the Pradaxa for a week or so to see where his numbers are at (and if the blood clot in his arm is totally dissolved) and the decision will be made at that point. He'll be retested for the Lupus Anticoagulant Disorder as well, which the doctors think was a false positive due to having already been ON the Pradaxa when that test was originally taken. If it comes back negative, he's OFF the blood thinners for good. *Which makes me very happy after reading Newbiewife's very sad post the other day about her husband's passing due to a hemmoragic stroke thought to have come from blood thinners. My condolences to her once again.*

We are feeling good that progress is being made! Lots of symptoms Chuck was suffering pre transplant are now gone. The 'stomach of a coyote' he used to brag about is no longer like a coyote, however, but more like a squirrel or maybe a little kitten, I don't know. But not fierce and wild to where he could eat an entire slab of ribs with a quart of baked beans and 2 ears of corn. Yeah, no. Those days are behind him, I think. I'm glad to see him eat 3 bones of a slab, a small side of beans and an ear of corn. That's considered a big meal which leaves him stuffed. But that's okay, less is more in the world of food these days at 64 with a liver transplant, a pacemaker and a triple bypass under his considerably smaller belt, right? He's gone from a 34 jeans to a 32 that's literally falling off of him. 😬 He doesn't want me to order him a 30 because he says he'll be 'gaining weight' but the doc told him not to gain more than TEN lbs back. I think we're safe with a pair of 30's to at least TRY. *Update: I ordered a size 30 jeans yesterday online! LOL



I'll update again in a couple of weeks with more good news to report.

Hi Lea, thinking of you and your husband. I suppose no news is good news and that Chuck is doing well and making progress.

Lea, it's very touching to hear his "donor rap" as it is referred to by his fans... he opens with saying if it weren't for his transplant, he would have died, his gratitude to his donor and donor's family, and ends with "it's the easiest thing to become an organ donor: all you have to do is turn to someone you love and say "hey, I want to be an organ donor.".

Since he literally tours all year long (still, at age 82!), it's a speech he gives over and over each year.

Having been married to a "Deadhead" for nearly 30 years, I've often heard him speak of it. It's a great message.

NGE: 24 years ago Phil Lesh had a liver transplant! Amazing! And still playing concerts & going strong. Love it.

Phil Lesh, the bass guitar player for the Grateful Dead, had a liver transplant in 1998. Since then, during every concert that he plays, whether under his own cover or as a "guest" player, he talks about his transplant, and the importance of being an organ donor.

welcome back home!! :) :) :)

I'm so happy you are home. When you're sick, there's just no place like it!

When DH had his transplant, it was such an emotional time. 16 years and counting. He got to see 13 grandkids born and continued his career that he loves so much.

You're still in the early days--but, wow, such great support and so much love!

And yes, there are not nearly enough donors. We made it our goal to educate people about the 'beauty' of organ donation.

I hope your donor's family accepts your thanks and can begin to heal from their loss.

All good wishes for you guys!!

Colleen.........AMEN sister! I was shocked to the core that mom chose that time to peacefully pass......literally 3 days after Chuck became eligible for transplant! I'm writing her eulogy in the midst of everything else here & that thought keeps popping up in my head.

Alva, Mayo had SO many patients to handle at their Phoenix campus, they could not fit in ONE more person for labs last week, so we had to drive to their Scottsdale campus 20 minutes away........4x that week. Yet the results STILL come in within 20 minutes of the blood being drawn, all but 1 that comes in w/i a few hours. The streamlined efficiency of their entire operation is remarkable.

Yesss. Your Mom’s service. I still take my hat off to her for passing before Chuck got the call from Mayo. 😀

I am so glad you updated us and filled us in. I honestly have to admire that the medical system is getting this so together. Chuck as much as he means to US is but one patient. This is quite remarkable. You will remain one busy gal.

Chuck's PCP appointment went beautifully this morning! We love this man, he has saved Chuck's life 3x now, honestly. He is a brilliant man in every sense of the word. He was shocked at how great Chuck looks; and he's gaining weight finally, but PCP said just gain maybe 10 lbs, no more!

PCP made PT appointments for him, blood tests for every week, the nebulizer appts for the inhaled antibiotics, everything. No pushback at all from Kaiser who can tend to be cheap when it comes to 'extras'. They're going to keep him on blood thinners for 3 months, then do another CT scan, and re test for Lupus Anticoagulant blood disorder which was positive last time around. May have been a false positive due to being on Predaxa, they do not know. So all of his docs are coordinated now at Kaiser, with Mayo, it's perfect. They're all using the same computer system too so they can cross reference one another. Tomorrow he has the cardiologist appt, then late in the month the Hepatologist. She is the one who will monitor his anti rejection drug levels in his blood, but ultimately MAYO is the one who makes any med CHANGES! Amazing how all of this works, I must say. We feel in good hands here due to his PCP, his Hepatologist (who's head of dept) and Mayo OVERSEEING everything and keeping on top of his meds/blood levels. He's feeling good and able to drive, too, thankfully. The drop foot is incredibly better than it was at the beginning, even without the specialized orthotic he'll be getting from Physical Therapy.

I am trying to unpack suitcases, do laundry, grocery shop, take Chuck to his appointments, and keep on top of everything going on with meds/lists/real life back home. Now I have to arrange for my mother's funeral at the military cemetery that I put off while we were planning our trip to AZ for this transplant. I will call the Neptune Society so they can get that on the cemetery's schedule in the next couple of weeks; she will be interred opposite my father & her headstone will be engraved on the reverse side of his. It's nice weather now vs. the cold & snowy weather we were having in late Feb/March when we would have had the service outside at the cemetery. Postponing it turned out to be a good idea, I think. (She was cremated and her urn is safe here at my house).

One step at a time.

Just wanted to update that we're alive & doing well! Chuck is feeling very good and adjusting to life back home with no hiccups so far. God is good and so is the Mayo Clinic! :) And so are you good people for all the support you've given me along this journey!

Cheers!

It's wonderful that you're home and Chuck is doing well! Make sure to give yourself a few days to recuperate, this has been quite a journey for *both* of you , and you *both* will need some recovery time.

Is there anything more satisfying than sleeping in your own bed?? Congrats on making it back!

Welcome Home! You now have a whole new appreciation for it, huh.

There's no place like home is there? I know that you have a new found appreciation for your home and for life in general. You can't possibly go through what you have and not be permanently changed.
We are all praying for continued healing and no complications here on out.

I'm so happy for you both!

Home again! I am thrilled! Thank you so very much, and CX, as well, for taking us on this journey with you. So many of us would have been wanting updates, afraid to bother you with them. Feel so lucky to have been in this strange new world I really knew nothing much about. So grateful for the comaraderie you had from others brave enough to take this journey.

Thank you for taking us along on your journey. Now the next chapter begins. I hope Chuck does fantastically well and you two can get back to normal life, whatever that may look like.

My brother's cousin died while waiting for a living transplant. I am glad your husband beat the odds.

Lea: So glad to hear that you're home!💖💖

So glad you are home!!! May the next months be peaceful!

Lea, I am so happy and relieved for you and Chuck.

So glad you made it home safely!

I bet you will be so glad to sleep in your own bed!!

May God bless you all!

🎉🥳🎈🪅🎁🎉🥳🎈🎊

We're home. It took us about 7 hours with stops but we made it. DD unloaded the heavy stuff from the car and carried it into the house for us, and then I drove her home. My house looks like a mansion, my bed feels fit for a queen, and Honey was rolling on the lawn with happiness......scurrying from the lawn to the hallway and back again. Everything greened up while we were gone and looks so lush, its funny. But it's 100 degrees here....lol. We'll take it, we're just happy to be home!

Chuck is feeling fine, took today's ride well, and is sitting on the couch with his feet on the coffee table just like always.

Its almost like a dream we were there and back. I read an article in the car that 106,500 people are currently waiting for an organ transplant in the United States alone. Every 17 minutes someone dies waiting. I am very thankful to God, The Mayo Clinic and the donor that Chuck is no longer waiting for a liver.

Thanks everyone for your support. 😚

Angels on your bumper.

When I have been away from home for a while, I wish I could hug my house. It will be good to see home.

Thanks for the wonderful travel log. I could see it all now! I love it.
One of the cutest christmas trees I ever saw was the skeletons of those tumbleweeds stacked up and decorated.
Yes, try to keep Chuck hydrated. It is such a problem for me in the heat when traveling as the 80 year old bladder says "don't drink a lot if you're going on the road and the rest of me knows I better NOT get dehydrated. It's being between the devil and the deep blue.
Traveling with you today while I take care of the Foster Dog--baby sitting.
Will be relieved when you are home; bet the Honey will be Happy, as well.