I sound more worried than I am. It's just that my new doc is very thorough - appointments last an hour and then I parse through his comments for a couple of days. That's the fun part. Can't just celebrate and celebrate, eh? Gotta do my part and pay attention. It's tough to ignore all the new data that pours in after these 6 month service calls. 'specially when it's all good news.
Canuck said
Jun 9, 2018
SS,
hm, the keys words striking out at me are ... "probably" (like maybe not very likely at all!), "if" - another big undefined maybe nothing!, "could be" which most usually gets disproven - "early" could be dead wrong, like ... as in you could be waiting decades and decades in following nothing! I know googling up on these conditions tells you a lot more, but um, aren't we getting a little ahead of ourselves here ... you might be very, VERY old before you will see the what if's and maybe's were all wrong, and that perhaps, at best, you possibly own a tad of crud, liver dust that's all! I agree with your doc, let you and happily functional liver live it up. Just walks, fun walks, not ruminating ones are called for.
So neat, we have RC coming in with good reports at 9 months, your 18 month miracle, and now Boxers brand new one! A-maz-ing!
sailing shoes said
Jun 7, 2018
Hi Observer
I still have the book.
5-1-18 said
Jun 7, 2018
sailing shoes, i love that quote from ram dass...... indeed "be here now" ; you have a great outlook. it's nice that you have your doggy to walk to get you moving
Observer said
Jun 7, 2018
Great results and great attitude.
Be here now was a pivitol book for my siblings and me.
boxers said
Jun 7, 2018
Congrats on your fabulous labs. I hope to be following in yours and RC's footsteps in 9 and 18 months. I know it is easy to say not to stress about your glitch...but I really believe stress is our worst enemy or I prefer living in denial :)
Boxers
sailing shoes said
Jun 6, 2018
I tell ya, RC, the walking ain't easy sometimes. Old knees and old legs. And gouty feet. But, I have one of those old Schwinn Airdyne stationary bikes. It will often loosen things up enough to walk.
I expect, RC, you'll be passing me somewhere down the road ... once you get your motor running.
Meanwhile, like Ram Das said in the 60's, "Be Here Now." Its a miracle we're able to do that.
robertsamx said
Jun 6, 2018
WoW SS, You have such a great outlook on your Transplant and your Life. After what you have been through and at 18 months post you are the tail lights I will follow in the dark!! Showing us the way!! I dont feel 20 myself, not even 21- 62 going on 80 perhaps? I will be in deep thought often with my higher power discussing your liver and healing. I just had my 9 month check up and everything is good. I just wish I would have kept my body moving in early recovery, I am so locked up! But all in all Im ok and things will get better. RC
Tig said
Jun 6, 2018
That’s fabulous! I agree with your doc, live life and have fun. For now, your test results are stellar and I have to believe they will stay that way. You were given a gift and I know you’ll take care of it. Even if the obstruction worsened, I want to believe there are options available before retransplantation would be required. My recommendation? Dispense with those thoughts, continue your recovery and enjoy every day!
PS: I would be happy with 40, ha!
sailing shoes said
Jun 6, 2018
I had my 18 month doctor visit this morning - With my hepatologist instead of transplant surgeon. Everything is good with a couple of wrinkles. First, here's my labs:
Tacrolimus 5.7
AST 17
ALT 10
Total Bilirubin 0.9
Albumin 4.4
Creatinine 1.1
Platelets 169
Reds/Whites/blood chemistry, calcium and minerals, are all in line and unremarkable.
However, a new thingy was noted on the MRI report that I did not notice before, but the doc did:
" .... T1 hyperintensity, probably early cast at the biliary confluence." Here's the link for BCS - Biliary Cast Syndrome:
Layman terms, it's a buildup of bile-crud at the confluence of the left and right biliary tubes in the liver, where they splt. Could be the result of the donor liver being without blood for a period of time. It shows up in one out of six liver transplants. Difficult to treat. If it grows, they will use a catheter and balloon to clean it up. If that is unsuccessful, possible re-transplant.
Nothing to do but watch it. First sign will be a change in AST/ALT. So monthly labs and 6 month MRIs will continue.
That said, the doc said I'm doing very well, enjoy the gift, and go live a life. He says, with a twinkle, "What, you were maybe expecting to come out of this feeling like a 20 year old?"
I was thinking maybe a 21 year old - certainly not 20.
I'm going to take my doggie for a walk in the park and think about all this. lovin life
I sound more worried than I am. It's just that my new doc is very thorough - appointments last an hour and then I parse through his comments for a couple of days. That's the fun part. Can't just celebrate and celebrate, eh? Gotta do my part and pay attention. It's tough to ignore all the new data that pours in after these 6 month service calls. 'specially when it's all good news.
SS,
hm, the keys words striking out at me are ... "probably" (like maybe not very likely at all!), "if" - another big undefined maybe nothing!, "could be" which most usually gets disproven - "early" could be dead wrong, like ... as in you could be waiting decades and decades in following nothing! I know googling up on these conditions tells you a lot more, but um, aren't we getting a little ahead of ourselves here ... you might be very, VERY old before you will see the what if's and maybe's were all wrong, and that perhaps, at best, you possibly own a tad of crud, liver dust that's all! I agree with your doc, let you and happily functional liver live it up. Just walks, fun walks, not ruminating ones are called for.
So neat, we have RC coming in with good reports at 9 months, your 18 month miracle, and now Boxers brand new one! A-maz-ing!
Hi Observer
I still have the book.
sailing shoes, i love that quote from ram dass...... indeed "be here now" ; you have a great outlook. it's nice that you have your doggy to walk to get you moving
Great results and great attitude.
Be here now was a pivitol book for my siblings and me.
Boxers
I tell ya, RC, the walking ain't easy sometimes. Old knees and old legs. And gouty feet. But, I have one of those old Schwinn Airdyne stationary bikes. It will often loosen things up enough to walk.
I expect, RC, you'll be passing me somewhere down the road ... once you get your motor running.
Meanwhile, like Ram Das said in the 60's, "Be Here Now." Its a miracle we're able to do that.
WoW SS, You have such a great outlook on your Transplant and your Life. After what you have been through and at 18 months post you are the tail lights I will follow in the dark!! Showing us the way!! I dont feel 20 myself, not even 21- 62 going on 80 perhaps? I will be in deep thought often with my higher power discussing your liver and healing. I just had my 9 month check up and everything is good. I just wish I would have kept my body moving in early recovery, I am so locked up! But all in all Im ok and things will get better. RC
That’s fabulous! I agree with your doc, live life and have fun. For now, your test results are stellar and I have to believe they will stay that way. You were given a gift and I know you’ll take care of it. Even if the obstruction worsened, I want to believe there are options available before retransplantation would be required. My recommendation? Dispense with those thoughts, continue your recovery and enjoy every day!
PS: I would be happy with 40, ha!
I had my 18 month doctor visit this morning - With my hepatologist instead of transplant surgeon. Everything is good with a couple of wrinkles. First, here's my labs:
Tacrolimus 5.7
AST 17
ALT 10
Total Bilirubin 0.9
Albumin 4.4
Creatinine 1.1
Platelets 169
Reds/Whites/blood chemistry, calcium and minerals, are all in line and unremarkable.
However, a new thingy was noted on the MRI report that I did not notice before, but the doc did:
" .... T1 hyperintensity, probably early cast at the biliary confluence." Here's the link for BCS - Biliary Cast Syndrome:
http://www.journalmc.org/index.php/JMC/article/view/2467/1828
Layman terms, it's a buildup of bile-crud at the confluence of the left and right biliary tubes in the liver, where they splt. Could be the result of the donor liver being without blood for a period of time. It shows up in one out of six liver transplants. Difficult to treat. If it grows, they will use a catheter and balloon to clean it up. If that is unsuccessful, possible re-transplant.
Nothing to do but watch it. First sign will be a change in AST/ALT. So monthly labs and 6 month MRIs will continue.
That said, the doc said I'm doing very well, enjoy the gift, and go live a life. He says, with a twinkle, "What, you were maybe expecting to come out of this feeling like a 20 year old?"
I was thinking maybe a 21 year old - certainly not 20.
I'm going to take my doggie for a walk in the park and think about all this. lovin life