Hep C Discussion Forum

Tig · Admin

RE: Got the call!

sailing shoes · Veteran Member

That picture says a lot about the success of your transplant. Congratulations, RC. It seems your body has come to terms with it's nice new neighbor.

f

robertsamx · Guru

Thanks SS. I watched the videos. My rejection drug list has gone from this to just 6mg daily of Tacrolimus in just 9 months. See pics below! RC

-- Edited by robertsamx on Sunday 20th of May 2018 10:12:16 AM

Canuck · Guru

hey thanks, those were good!

Loved how there has been so much footage on this famous guy over the decades they could edit and splice together so many of his dif looks and dif eras of his evolution.

Amazing guy and work. Amazing people do amazing things.

He must be sorely missed by his lovely wife, patients, collegues, friends and Pittsburg. C.

sailing shoes · Veteran Member

C, my coordinator worked with Dr Starzl for years. She said one of his early TP patients received his liver 33 years ago and is now in his 80's. Amazing.

Here's a link to Starzl's work, when he was developing immune suppressant protocol and transplantation in general.

You'll love this guy:

www.youtube.com/watch
www.youtube.com/watch
www.youtube.com/watch

The second link is 20 minutes, and a comprehensive history of transplantation, rejection and suppression. It's astounding when you think his first successful liver transplant was in 1967. Tacrolimus came around 1990 and made a liver transplant a common procedure. What a story.

The third link is how Pittsburgh became the Transplant Town.

Canuck · Guru

Boxers will have a lot of reading and catching up to do when she gets back here, or maybe she'll open up on a new thread and miss the blabberin' and pondering here. Regardless, our minds dwell on her, and I feel the tons of good vibes we are all sending her way.

Everything you and RC write from your perspectives are very interesting for all of us to know. Neat to know that little bit about Dr. Starzl! Glad you share these things.

Oh ya, now I remember (now that you said it again) that it was your friend who was in that study - that whole thing, all the anti-rejection medicine protocols and theories must be so complicated, but riveting!

I have no idea about these drugs, just read something on tac once (it covered the first year after TP of liver - or lung/heart/kidney), there, it read people were roughly started off "sort of wgt based" (depending on the organ received, each having slightly different dosages per kg body wgt) and modifications if you were on other drugs, etc., but ultimately they went by how your blood showed the doses were being absorbed/carried (a high, low or maintaining) a "wanted" level, somewhere between 5 to 20 in some cases. Maybe it is NOT done that way - it was just that one thing I read.

Puppies are not "ordered" they are adopted, or, more accurately you become their pupp-ets. Do you still have that tall cat and the short dog, that dog that likes cats? mm, wonder how the newest addition is going to go over with the rest of the non-human clan.

Yup, this life certainly is amazing alright. smile

sailing shoes · Veteran Member

Stunning is the word, Canuck. Stunned. And we ain't seen nothing yet. Look what they did with HCV. I think there's gonna be a traffic jam of miracles ahead.

I mean, it's not like I'm going whee-whee-wheeeee through life, but 25 years ago the hepatologist said I had maybe 3 years to live .... and here I am with a fine new - okay, used - liver and an actuarial score of a normal person. Stunned. I look at my scar and just swoon. There are so many on the list that don't make to the front of the line. Unbievable that I was chosen - at my age.

I go to the Thomas Starzl Transplant Center. Dr Starzl was still active until he died last year at 90. He and his dog were often seen in the Center or at his favorite breakfast restaurant. He's the guy who invented Tacrolimus (as well as Cyclosporine, I think). As well as liver tranplantation in general. Many lives saved due to his work. He said 50% of TP patients should be able to go off immunos eventually. There is a research program at UPMC right now that takes recipeints 3 years out and attempts to wean them. A friend is in that program, she's a live-doner-recipient, 8 years out, and has been completely off immunos for about a year. I spoke to the study nurse and she will call me in 18 months if the study is still recruiting. I guess that's how they determine who can do without Tacro ... wean them off and if there are signs of rejection, back you go. I expect this study will answer a lot of the questions of who and how.

That said, I have no idea HOW they determine suitability to reduce or stop Tacrolimus. Until you said it, I did not realize Tacro was weight based. I thought everybody metabolizes Tacro differently. They set a target level for each phase of the TP and adjust the dose accordingly. I've heard of people many years out who are still taking 1/2 mg/day. Seems like a token dose, but whatever works.

I'm sure I would notice a lower dose or no Tacro. I still blame it for everything from tingling lips to bloated belly to insomnia and fatigue. And my bald head. And basals. Living without an immune system is no picnic. Actually, can't picnic much at all without one.

Life is good. So good we are about to order another puppy. smile I mean, if I'm gonna be alive, what is more life affirming than a puppy. A fifteen year committment.

C'mon Boxers, I can only hijack your thread for so long.

Canuck · Guru

So glad you posted your good and thorough report SS!

You are definitely firing on all cylinders these days.

I recall you mentioned your transplant team had a slightly different ideas and protocols for anti-rejection drug use, thus why all the other drugs you were originally on post-transplant were dropped, with you only being on the tac for the last 6 months now (out of the 18 months since TP). I wonder HOW they determine risks of rejection, in order to know if they can decrease tac (or even discontinue tac one day?) I only read they try to keep your blood level of tac at about 5mg/dl (minimum) - or, they could keep someone as high as 20mg/dl! - but, that was only written in regard to about the first year. I am curious and wonder if you would feel better if you were "tac- less", (better in your body), or whether you can be without tac. Being that the oral dose is weight-based (to end up giving you this minimum 5 mg/dl blood level), how much lower can the oral dose go?

I sure like the sound of all your imagings and labs. A puny AFP, pristine everything, save the boastful spleen - what's with that?, what was it doing before? Lovely creatinines! for a 71 year old, on tac no less! Although 1.4 was not sky high, it IS lovely to see anything below 1.29! biggrin .

I remember thinking before how lucky you were to get almost automatically set up for that MOHS, something almost near impossible to get here (I certainly don't mean "lucky" that you are a frequent-flyer with the basal cell thing going on), but if you are, then MoHS sounds the way to go - I researched that method when my partner was (instead) getting malig. melanoma repeatedly carved out of his face, the "standard way". MOHS seems so much more reasonable/precise. Almost impossible to get set up for it up here! Only one place to go, and a whole Province full of people to slice - doesn't compute.

With 18 months done, there must be many a day you feel like you're a walking miracle - it just simply stuns me, how we can be given life again! biggrin

Yes, we all have our hearts and hopes and minds on Boxers. C.

Tig · Admin

Hey SS,

I don’t know about the rest of the group (yeah I do) but I think that’s a fantastic report! Congratulations on all of that great news. Of course the basal sucks, but here in Florida, skin lesions are almost expected for those that spent any time at all in the sun. At least before the OCD use of sunscreen we see now. It’s a good idea for those coming up and something we have to get used to.

I agree with you completely on the concern each time we go in to have our oil checked, changed and scanned. One of these days they’ll find something! At least I believe if we stay committed to the check ups, we’ll see it coming with enough time to do something about it. My Dad is 91 and has had his share of problems, but keeps on ticking. Anytime something aches or pains either of us, we both agree with the shared conclusion, something will eventually get us! Until then, just enjoy life anyway possible!

Good luck at the Hepa’s appointment.

sailing shoes · Veteran Member

Meanwhile, while we're waiting ....

I had my 18 months post-TP service check last week. Labs, CT chest, MRIs abdomen . All results are in and everything is green - no mets in the lungs, no growth in liver or kidneys, AFP 'bout zero, spleen a bit big, ALT 10, AST 13, creatinine 1.1, tacro 5.4, aso. HCV was checked last time, still UND - since 2014

Good to see creat is finally moving down from it's plateau of 1.2 - 1.4.
I hope they will be able to reduce the tacro dose now, I've been at 5 mg/day (3 AM, 2 PM) for 6 months. That would be very nice indeed.

Dermatologist found another basal - MOHS next week. They want to monitor me every 4 months now. I became a sun block convert after the last check, but still grew 2 more. In the winter sun. Unfortunate side effect of immuno suppressants, I guess. Be careful out there.

At my age, it's a privilege and a comfort to have these tests done. Early detection and all. It is, however, a stressful time. You just know they're gonna find something. Eventually. If they keep looking.

I get another full body check up in 6 months, then annually for another 3 years. Labs every month and now dermatologist every 4 months. I'm doing well, still walking a couple of hours a day, riding the exercise bike. But, I'm still lumpy, got some abdominal nerve pain and numbness, bloated after eating ... it's weird, but I seem to carry my weight differently. I'm tired, my knees are killing me, ... oh yeah, I'm 71. biggrin I think part of me thought I would spring forth from the TP as a 21 year old.

Ah well, I see the Hepatologist (not TP surgeon) in a couple of weeks.

And I'm really not complaining, just rehearsing for the doctor.

Hope all is well with all. Special love for Boxers.

f

Tig · Admin

I was thinking the same thing, RC. Since we haven’t heard from her about it not going forward, I’m thinking she might have. I was hoping she would have had someone let us know, but you remember how busy and hectic that couple of days was. If she is anything like you, we should get the next update pretty soon. I hope so!

We’re wishing you the very best! Check in when you can

robertsamx · Guru

The waiting The waiting. I cant stand it!!! We need a update. RC

Observer · Guru

Oh yay boxers, I hope this is *the* one for you. We will all be thinking about you and sending good energy to you. (and anxiously watching for posts/updates)

Youre amazing and strong.

Alison

robertsamx · Guru

GOOD NEWS DEBRA Praying this is the one for you. I hope your on your way. Is someone going to post how things are going this evening and tomorrow? I will be in Seattle the end of this month (5-31-18) and hope to see you. Chris and I will be thinking of you often. You will be ok, stay positive. Can I call and check on you at Swedish? PM me with your contact at Swedish. RC

Tig · Admin

WOOHOO!!

How about that! We’ll be waiting with our dancing shoes on, Boxers. Get on that plane and put on some good rock and roll. The plan that you have spent months setting up is going forward exactly as you designed it to. Let it happen and put the worry behind. They know what they’re doing, let them do it. You’ll be waking up in no time at all with a healthy new liver and lease on life. We’ll be here with bells on! Good luck!

Canuck · Guru

WOW boxers! This call could be it! Your ticket to freedom, just go with the flow, no choice but to go with the flow at this stage, and see what happens next - do what you are told, hold yourself together. You'll be OK, they will ensure it. Precious cargo, hope it's a go and you can get on the plane and get this rollin this tme. Go ahead and be in this mind-bending state of flux (unavoidable), we will try to remain clam and glad for you. Very, very excited for you on this end! Sending nothing but good, good vibes your way. Please do try to keep us posted when you can. C.

sailing shoes · Veteran Member

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sailing shoes · Veteran Member

Alright, Boxers!

What flashed in my mind as soon as I read your post, is an image of my Transplant Surgeon beaming at me in my ICU haze, as he whispered, "Your liver is already producng enzymes!"

Whoopee. Buckle up, Boxers.

boxers · Veteran Member

Well, got the call at 5:30 this morning to get things in order and they would call me ~ 9am. I have already changed flight reservations once and waiting. This is an emotional roller coaster....I need valium or something similar. Will keep you posted on what happens.

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