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Comment by JAS on March 22, 2013 at 2:50am

Congrats Matt!  Have a great day to all Carol and Carlos on your for your upcoming milestones.

My 1st year wont be until Memorial Day!  All is well.

Comment by Matt Lawson on March 21, 2013 at 1:10pm

My 1 year anniversary (liver) tomorrow. well done to all you guys here esp at 10 and 22 years!

Comment by Carlos on March 21, 2013 at 1:02pm

Hello Carol, congratulations on 22 years!  I'll have 10 years 5/03 (I think it was 5/03, it was so long ago).  Many people have issues with depression. Just the fact of finding out you may die if you don't have a transplant can cause PTSD just as much as if you were in battle.  Surviving gives one compassion for those we have seen struggling and lose.

What has been the long term effect on your kidneys as Prograf is known for liver toxicity over the long term.  One thing that has puzzled me about liver transplants is how little is known about tapering from Prograf for those long-term liver recipients.  Livers, as opposed to other organs like kidneys, regenerate themselves and this is why partial livers can be transplanted and then grow.  I'm not a doctor, but I can read and the peer-reviewed medical literature indicates the possibility of ending dependence on antirejection meds for some long-term liver recipients.  This is not something easily discussed with transplant specialists because the clinic has rules that discourage candid discussion of this.  They may also be publishing papers on the basis of a 100% compliant population.  Of course, after 3 years of being very sick and 10 years of knowing those who have survived and those who have not I realize most must rely on anti-rejection meds and to taper would be foolish.  However, there appears to be some population which, after many years on low doses of immunosuppressants are able to live without meds. The fear of kidney damage, cancer, and any old germ that may take advantage of a lowered immune system may be reason to pursue this line of research.  Of course it's hard to argue with 22 years:-)

Comment by carol schutt on March 21, 2013 at 7:36am

Hello all Prografers,   I had my transplant 22 years ago.  my liver birthday is 3/31.  I have only been on Prograf, never anything else (except for the fist couple of months).  I take 1 mg 2x/dy.  I wrote to Dr John Fung at Pitts Med Ctr where I had my transplant to ask about getting off of it completely.  But,  that is for another day.

Live life on your terms.  Don't fear.  Learn what works for you & your iver & go for it!  I was chronically ill for 18 yr before transplant, so I might be a little more daring than some.  I became diabetic due to the Prograf.  Trust me:  the diabetes is more of a full time job than the liver.

take your meds, eat right, excersize, don't hang around really sick forkls for a long time.  then go climb mountains, go waterskiing, camping, fishing, go, do, live life to the fullest.

My step daughter got chicken pox.  I had cared for her that morning & was gone for the day.  My husband met me at the door & said Emily has chicken pox, what do we do?

I called Pittsburg, my nurse coordinator.  she was hysterical.  I was calm.  I could not undo my moring hours with my girl, so whatever comes, comes.  the nurse was hysterical, let me say that again.  I had to calm her down.  So, I went to my local hospital, got a BIG shot a immunoglobulin & went home.  We stayed in opposite sides of the house, waved at each other, blew kissed & we were both fine.

don't get hysterical, do what must be done, take it easy, but do it, do something!

I have chronic depression, I was sick from 18 - 35 befor the transplant & then depressed after transplant.  I have had to work on that since first grade!  SO, again, I do what has to be done & live!!

love, carol

Comment by Jan Ward on February 11, 2013 at 4:36pm

@JAS You're lucky your body is absorbing the meds so readily. Be happy! I started out much much higher and now down to 1 mg x 2 Prograf and 50 mg of immuran once a day.

@Karen: Totally right! Even after 3 years and getting my annuals with clean bill of health I have to watch myself getting worked up.

We were given a great gift...let's not ever forget!

Comment by Michael Strane on February 11, 2013 at 3:47pm

I don't recommend even considering ever being off the meds.   I don't know everything, but I highly doubt any do would ever consider it.

TC Admin Comment by Karen Weddick on February 11, 2013 at 3:25pm

Don't let your transplant run your life.  You were given the gift of life in order to live and enjoy life.

Comment by JAS on February 11, 2013 at 3:08pm

Not worried about them, actually happy they are such low . I was wondering if anyone else started out that low. Is it typical to start this low and they raise over time? Of course there is always the thought to of maybe getting off of them someday. Who knows, I am grateful to be alive and enjoying it, No worries. Just trying to connect with others.

Comment by Michael Strane on February 11, 2013 at 2:38pm

Worrying about your med list and your dosage  especially early on, is a sure way to drive yourself crazy.

Comment by JAS on February 11, 2013 at 2:07pm

So I got the call from the clinic today, keeping me at 1/2 mg twice a day on Prograf and reducing the Rapamune from 1 mg a day to 1/2 mg a day. They said they levels were supposed to be around 10 combined and they were running 12 to 15. They said when I am 1 yr post op, they only want it at 8 for the combined levels of anti-rejection. So I am hoping that means I can continue to reduce as things move along. Although I think after my 1 yr post op date they will try me again on the Hep C treatments. I tried them twice years ago, but my body couldn't handle it. once my counts got to low then the other time my breathing was affected. I was working then and not working now so I hope that makes a difference. They were going to try and get me through the treatements before transplant but I got the call for transplant before they could start them.

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