Hey SS,

Thanks for the update. That‘s the kind of news I love to read. You and RC both are inspirations to us. It was riveting to see how you both dealt with the adversity and came out so far ahead. I continue to be amazed. 

Keep us informed and enjoy this miracle. You have a Merry Christmas and Happy New Year!

My miracle, RC, was how routine the whole thing was.  YOUR miracle, is that after throwing every possible complication into the soup, you made it through.  In good shape, apparently. We are both taking only one immunosuppressant, and the same dose is keeping us both at the same level.  Even the complications have become routine.  During my evaluation for the "list", the Transplant Surgeon said, "Rejection isn't really a problem anymore - we know how to deal with it."  Your story bears that out, RC - whatever the complication, they know how to deal with it.  Congratulations to you.

It wasn't that long ago that the treatment for HCC was, Go home and get your affairs in order.  Now, TACE keeps the tumors manageable till a liver becomes available, and transplants are routine.

A reminder to the cirrhotic members of Club Zero:  HCC is a real risk, even after the dragon has left the building.  My tumor was found 18 months after I was UND, during an annual blood test for the tumor marker AFP - Alpha Feta Protein.  It is often the first indicator. Get one every year. (A test, not a tumor)

Ahh, Iris - I'm afraid my sailing days are behind me.  I sold the boat years ago, after living aboard and cruising the East Coast and Caribbean for three years.  Now I take the bus.  And you too, Iris, send postcards from the different ports your life is taking you to.  I'm amazed how well you are dealing with ... well, life.  Thank you.

Y'all have a good Holiday.

You are an inspiration, what fabulous news!,!

Now its time to get on those sailing shoes and go for a trip around the world! Congratulations!! Send us post cards from all the ports

Blessed Holidays to you, Iris

We sure do appreciate hearing updates like this one SS. 

Boring and normals labs ...WHOOO HOOOO

Hey SS,

Great report to read.  You have a way about you in your ability to give us the whole of the picture, helps to give us a bit of an idea what it must be like to walk around in your lucky shoes. What you and RC have gone through, are going through, beating the odds like this has always just blown my mind. What, not that long ago, could have easily taken any of us out, you now describe so well - we are fortunate to be able to see  this   ... "The miracle, the gift of life, a complete cure of HCC, has become routine." ...  Unreal what we can do today! "Routine"! Boggles my mind. We are so, so lucky we have you and RC to share with us and to be our evidence of miracles. We now just need Boxers latest news.

You and your docs "subtleties"!! - ha!, the 50/50 rule - yes 1/2 the people could look at that level in the glass differently!

Glad you posted. C. 

That is so awesome sailing shoes!

Hi SS.   What a great Dr visit.  Your labs and scan came back  perfectly normal. Your labs look like mine except for the alka phos, mine is hanging at about 135 and they dont seem to be too worried about it.  You mention a stabbing pain, could this be scar tissue adheasion? I have heard of that and luckily I dont have any pains at all. Just the numbing below the scar. My Dr wants my Tac 4 to 6. So I take 2.5 am and 2.5 pm My last check 4 weeks ago I was 5.5. And thats all for rejection meds. Its a far cry from what I came home on.  Sounds like you and me are doing pretty darn well. We have both heard the stories of rejection and complications and we both have dodged those bullets.  No more HCC is a miracle for us both.  Thanks for the report, Im right behind you at 16 months post, Im following your tail lights!!   RC

Greetings sailing shoes.  Thanks for that update.  I'm so glad things are working out for you.  Wow, what a process. What a miracle, at that.

I love boring labs.  They make me feel like I got an a on my test.

Thanks for sharing this wonderful success story. Enjoy your good living.

Cheddy

Hi everyone,

I just finished my 2 year post transplant scans, labs, and doctor visit.  All is well .

LABS:  My labs are boring and have been unremarkable since they stabilized in the months after the transplant.  Everything (EVERYTHING) is in range: 

          Creatinine - 1.1        Bilirubin -   1.2        Alkaline Phosphatase - 45       AST - 13        ALT - 9    EGFR -  69     Tacrolimus - 5.8

MRI:  No change from previous.  We're still monitoring the "biliary cast" noted 6 months ago.  That's basically bile crud forming at the joint where the donor's bile duct was sewn onto my existing duct.  There was apparently some damage to the donor's duct from transporting the liver in the ice cooler which caused the buildup.  The cast was termed "minimal".  Duct is not obstructed and no restriction to the bile flow.  No mets.  Nothing needs to be done.

DOCTOR: I take these appointments seriously and don't go in unarmed.  I keep a list of questions, symptoms, concerns, and notes on my desk for a week before the appt, then prioritize and clean it up the day before. I realized that nothing on my list was liver related, except to note the incision was still sensitive and there was still stabbing pain.  Everything else was OTLTP - basically the aches and pains of an old(er) man.    I made a case to lower my Tacrolimus dose, since my serum level was 5.8.  He said they were looking for tacro level between 4 and 6 two years out.  I said You worked with Dr Starzl when they developed Tacrolimus and even Starzl said 50% of patients could be weaned completely.  He said I could be the 50% - don't change anything.    He told me stories of people 30 years out who changed meds and rejected.  A good visit actually.  When done, he said, see you in 6 months, labs every three months, scans in 6 months.  Then annually going forward.

So there you go, I'll keep taking Tacro, 3 mg in the AM and 2 mg in the PM, and try agin in 6 months.  

The miracle, the gift of life, a complete cure of HCC, has become routine.