Lealonnie and Hubby: Liver Transplant Journey

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

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.

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

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.

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.

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!

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!

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.

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.