163305 tn?1333668571

Happy Hepatitis C Day !

Sounds kind of strange, doesn't it ?

I woke up thinking about walking around with a sign above me pointing down saying, 'hep C took my liver, don't let it happen to you, get tested.'
But I'd have to pull my shirt up and show my scar to everyone.
Not that I'm embarrassed but it's cool and foggy by the bay today. LOL.

Spread Awareness !
15 Responses
Avatar universal
I would definitely brave the chill to see that!!!
1652596 tn?1342011626
you are so awesome.  having a transplant must have been so hard and didn't your daughter donate some of hers?  you both rock!  i hadn't even thought about hep c day until i read your post.  best wishes.  belle
146021 tn?1237204887
I looked at your pictures, how cool! I'm so proud of you for spreading awareness, but not at all surprised.
168732 tn?1311712079
Good to hear from you "old" buddies.  I'm 18 mo. post transplant - kidney also plus PM, but was down at Northwestern (Chicago) two weeks ago and all docs say doing great.  Still frail, but working out and gardening like crazy. So glad to hear about other survivors.
163305 tn?1333668571
Wowee Zoweee, Ladybug and Gazebo !
Haven't heard from you two in ages.

Bug, I don't write but I do think of you often.

Glad to hear you're recouping Gazebo. It took me a good full year and I only had my liver out, only~ha! Send me a pm anytime if you want to 'chat'.

Yes, Belle, my daughter donated 66% of her liver to me. Hers was totally regrown in 3 months time. She's doing great. The only long  lasting effect on her is she doesn't have her gall bladder.

The experience was crazy more than hard. I was so fuzzy in the head by that time it was just placing one foot in front of the other. Also, I'd already dealt with accepting death. By the time they rolled us into surgery, I had no questions about coming back out of it.

Love to everyone and huge hugs !
168732 tn?1311712079
That is great that you had a living donor! Especially from family.  I may have posted once before - TX worked but poor liver never improved but I was just getting listed, MELD high 30's, when I had a bad fall.  Hematomas all over one side so liver said "enough" and went down hill within days.  Waited at NU for three weeks, told later I was perhaps the sickest patient in hospital - nearly de-listed because so sick. Kidneys totally failed and heart going next.  The lord came through just in time and had dual transplant same donor - 11 hours, died on table twice.  Yikes.
Afterwards was still so sick almost shipped to nursing home, but "came around" just before discharge and got into RIC next to Northwestern - another miracle since I never would have recovered without those angels - and strong family support.  Spent total four months in the two hospitals.
Took a couple more months just to walk again, lost 60 lbs, etc. Now stable and much stronger, go to fitness center, swim and GARDEN! (With gloves, wash well ... fungus bacteria and bad things for immune system live out there). I'll send you a couple pics of my gardens and gazebo - hot out here in N. IL this year!  

Again, like you I don't follow or post much but got the email notification, and so glad to learn you Hawk and others still doing well.

2147300 tn?1369689688
OH,  What is the difference in transplant from family member vs. matching donor.  Does the dna of your daughter affect the rejection med list?  3 months and regrown, fantastic factoid.  I learned something today.:)
163305 tn?1333668571
The liver's regenerative properties are amazing !

Removing patients from immune suppressions is a controversial subject in the transplant community.

They were able to withdraw immune supression medication successfully from children who had  related live liver transplants in research at USSF.
There is current research ongoing at UCSF with adults who had related live liver transplants from their children.

In theory, I think it simply makes sense that the genetic link could make it a better match. Having said that, sometimes matches happen that work perfectly between strangers. One man on a transplant forum I frequent is 9 years out from his transplant and stopped taking his meds, 5 years ago.

Research has shown that about 20 percent of adults who’ve undergone liver transplant can maintain normal liver function without immune suppression. Research is ongoing to determine the immunologic profile of these people.

If Dad's the Liver Donor, Jr. May Not Need Immune Suppressants
By Crystal Phend, Senior Staff Writer, MedPage Today

Published: January 18, 2012

Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco and Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner

Action Points

*    Explain that many children who receive parental living donor liver transplants can safely discontinue immunosuppression therapy.
*    Note that the seven patients who developed acute or borderline graft rejection with gradual withdrawal of immunosuppression completely recovered with re-initiation or an increase in dose.

It's possible for children who receive a liver transplant from a parent to safely discontinue immunosuppression therapy, a preliminary study suggested.

Among 20 such children without early signs of graft problems, 12 (60%) maintained normal graft function for at least a year without immunosuppressive drugs, Sandy Feng, MD, PhD, of the University of California San Francisco, and colleagues found.

The seven patients who developed acute or borderline graft rejection with gradual withdrawal of immunosuppression completely recovered when it was started again or the dose was increased, the group reported in the Jan. 18 issue of the Journal of the American Medical Association.

"Although withdrawal of immunosuppression therapy in liver allograft recipients can precipitate rejection, most episodes are reversible without long-term consequences, rendering this patient population appropriate for drug minimization, discontinuation, or both," they wrote.

Lifelong immunosuppression puts children at risk of renal dysfunction, opportunistic infection, cancer, and other problems.

The high rate of tolerance off immunosuppression came as a surprise, Feng's group noted, because prior single-center series suggested only 20% of children would do well without it.

The researchers noted that their pilot study included only highly-selected children who had received a living-donor liver transplant from a parent at least four years previously, for reasons other than viral hepatitis or autoimmune disease. They also were stable on a single immunosuppressive drug without any evidence of chronic or acute rejection or significant fibrosis on liver biopsy.

In contrast, most prior evidence came from atypical patients who had to stop immunosuppression due to severe complications or who were nonadherent.

The study also used a strict protocol for drug withdrawal over a minimum of 36 weeks.

Follow-up biopsies more than two years after finishing immunosuppression withdrawal showed no significant change compared with baseline in the 12 children who tolerated it with normal graft function for at least a year.

One child was excluded early on for having violated exclusion criteria. Two developed acute rejection; five had indeterminate rejection.

Tolerance of immunosuppression withdrawal was associated with:

    Initiation of withdrawal later after transplantation (median 100.6 versus 73 months, P=0.03)
    Less portal inflammation (91.7% versus 42.9% with no inflammation, P=0.04)
    Lower total scores of the antibody response marker C4d on screening liver biopsy (median 6.1 versus 12.5, P=0.03)

No incidences of death, graft loss, or opportunistic infections were observed in either tolerant or intolerant children, suggesting that withdrawal was feasible for both groups, according to the investigators.

That was despite serious adverse events in many of the 12 tolerant children, such as biliary obstruction or cholangitis, portal vein stenosis, and bacterial or viral infections associated with increased levels on liver tests.

None of these events required re-initiation of immunosuppression therapy.
Avatar universal
   The fact that you found out you had Hep C, only after a cirrhosis dx, is very alarming, and could have happened to any of us Baby Boomers.
   It would make a good best-seller, and raise Hep C
Awareness, for a book to be made, about liver-giving.
163305 tn?1333668571
When I returned from Taiwan after my transplant, I thought about writing a book. I typed daily about my experiences.

There's a lot more to my story~ I didn't have insurance, couldn't get pre-transplant testing without insurance etc.
I became the first Westerner to have a transplant in Taiwan. ( live liver from my daughter) The experience was wild, to say the least, between cultural differences, language misunderstandings and my having surgical psychosis in the ICU.

The reality though is I can write a good letter or possibly a good short story.
For a book, I need a co-writer. I tried it once before ( about my travels).
If you know one, send them my way ;)
Avatar universal
Wow I was just reading about Taiwan's national health care system. They say it's wonderful. I guess you got to experience it first hand.
163305 tn?1333668571
Um. . . I guess. My experience was unique.
I did talk to many Taiwanese in the hospital who did have good things to say about the health care system
When I arrived there  I was living on 8% of my liver and according to the surgeon. I spent a lot of time sleeping and my what was left of my  mind was on other things.
The transplant surgery was excellent. The after care was archaic.
It's a long strange story. Find me a co-writer and I'll get to work on it !
( I'm not kidding )
789911 tn?1368636783
'hep C took my liver, don't let it happen to you, get tested.'

I love that.  Great story and conversation.  I would love to hear all about your experience from your diagnosis to post transplant.   to now.  
163305 tn?1333668571
Right, well sweetie, I'd have written the book by now if I did that.
Send a co-writer my way, and I'll get to work on it !
163305 tn?1333668571
Hope I didn't come across as too flippant. The story is a good one but getting old, to me.
I want to move  forward while still helping people if I can.
Once, I had more info about my history on my profile but deleted it in a panic when I thought I might get booted off the forum.

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