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Author Topic: If you are a liver transplant, let me know. Changing experiences?  (Read 20995 times)

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Offline Anette

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  • Posts: 61
  • Soon just transplanted, not transplanted with Hep
I have no one in Sweden who are transplanted as I can share experiences with. and I mean anyone who takes treatment Olysio / Sovaldi.
Tomorrow is the last day of the eighth week On Tuesday I will take blood samples to late to get the answer on Friday. I hope that I practice is completely clean from viruses.
Genotype 1a

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #1 on: August 16, 2014, 02:49:39 pm »
Hoping with you!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Mike

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #2 on: August 17, 2014, 02:18:00 pm »
Hi Anette,

Your friends in America are pulling for you.

I hope you get great news on Tuesday!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Anette

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  • Soon just transplanted, not transplanted with Hep
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #3 on: August 17, 2014, 02:31:49 pm »
Thanks  Iporterrn and Mike for your support! I really appreciate that, very much!
Genotype 1a

Offline Picnic

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  • Posts: 110
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #4 on: August 18, 2014, 02:02:58 pm »
Aneete,
I am a liver transplant patient on S/O. I am on week 2. Now have normal liver enzymes and viral load went from 2.5 million to 700 in 5 days. Transplanted in 2005. Thanks Larry
Larry

Offline Anette

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  • Soon just transplanted, not transplanted with Hep
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #5 on: August 18, 2014, 02:20:54 pm »
Hi Larry...great to hear that im not "alone" here. Did you try any other treatment before? I think of Rib/Inteferon? I tried two time. Last time was exactly a year ago. It ends up with a HUGE rejection. All ppl thought i should die. Even the doctors. really scary but i hang in and survived. So this time im very anxious that it will happend again. So far everything went smoth. I started 9 weeks ago with 23. Milion, last bloodtest (week 4 ) it was undetectable. Im gonna see my doctor tomorow and i think he will let me be on the 24 week program. We see what he say. Once again, nice to hear feom you.
Genotype 1a

Offline Picnic

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #6 on: August 18, 2014, 02:52:31 pm »
Anette,
Good luck! I was on three interferon treatments prior to transplant. I was  a non responder. After the transplant the Hep c was mild so they said I should wait for the new medications . 11 weeks to go! Larry
« Last Edit: August 18, 2014, 02:54:25 pm by Picnic »
Larry

Offline Anette

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  • Soon just transplanted, not transplanted with Hep
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #7 on: August 18, 2014, 03:09:06 pm »
Do you eat Tacrolimus? Cortison? I do, and also one pill that named Cellcept, dont know if its same name in USA.  Since last week i got headache every day, and i also feel my memory is bad. I forgot things and name. Dont know if its the meds that do this to me, or just my age hehe
Genotype 1a

Offline Picnic

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #8 on: August 18, 2014, 04:15:34 pm »
Anette,
I am only on Cyclosporine now. I stopped Cellcept a while ago. Hang in there!!
Larry

Offline Mike

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #9 on: August 18, 2014, 05:48:46 pm »
I'd like to thank both you and Larry for sharing your insight. It can really help others in similar situations.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Finbar

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #10 on: August 18, 2014, 06:49:30 pm »
Hi group I was transplanted in 2010 and have waited for this day. I'm presently on S/O but just started 3weeks ago and don't have any numbers from my last blood work can't wait to see my viral load which was 13 mill I'm so happy I can finally get rid of this monster which has been with me for over40 yrs .

Offline Anette

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  • Soon just transplanted, not transplanted with Hep
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #11 on: August 18, 2014, 07:32:38 pm »
Hi Finbar...another one transplanted, welcome. Make sure to write here when you have the testresultat, i bet it good news for you and us! Did you also tried the old treatment with Rib/interferon ? Are you also on Cyclosporine? I had that too, but after my rejection they change to Tacrolimus. I had much more sideeffects with Cyclosporine . Btw i was transplanted 2011-11-11.
Genotype 1a

Offline Finbar

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #12 on: August 19, 2014, 04:48:32 am »
Yes I tried the poison combo and didn't last a month it almost killed me. I was on celcept and prograf but they took me off due to rise in creatine levels, and now taking Rapamune and have been on that for about 3yrs with no problems. I'm getting little side effects from S/O like aches and pains some lip swelling but that may be from the sun but that's it . I wish I knew about that side effect ,I would have started my treatment in October lol

Offline Anette

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  • Posts: 61
  • Soon just transplanted, not transplanted with Hep
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #13 on: August 19, 2014, 05:17:13 am »
Just came home after doctors visit. He told me if my bloodsamples still are zero he gonna make my treatment time to totally 16 week. Just incase. Im in 9:th week now and my bloodsamples will be done this friday. So i cross my fingers it will go in my way=zero again.
He also said...IF just if the virus will be back after 4 week when i stoped i will get imigently new pills, probably dactlasavir. But i dont think it will return again. I wont make that happend, my mind is strong about that!
He did also a fibroscan, im in lever 6.2 that is very good..no sign to cirros or anything.
Genotype 1a

Offline Mike

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #14 on: August 19, 2014, 08:04:27 am »
 A big congratulations, Anette!

I'm so happy for you! I don't think the virus will come back.

Another dragon slayed!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #15 on: August 19, 2014, 07:41:53 pm »
Anette - that is fabulous news. It is a good day here in the Hep Forums!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Anette

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  • Posts: 61
  • Soon just transplanted, not transplanted with Hep
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #16 on: August 20, 2014, 08:20:51 am »
Hey guys and gals....nurse just called.....im done...its zero again, so i stop Olysio/Sovaldi oktober 12. Im crying of happiness and relief. Omg my life is back, now i dont care about the sideeffects anymore, its worth it. Bye from the happiest woman in Sweden right now. And a big good luck to all you  that fighting to get well.
Genotype 1a

Offline Mike

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #17 on: August 20, 2014, 08:32:34 am »
Hi Anette,

I'm so happy for your tears of joy. It's been a long road for you, but the journey is almost over!

I'd give you a big hug if I could! ♪♫♪ (insert favorite ABBA song)♪♫♪


Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Anette

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  • Soon just transplanted, not transplanted with Hep
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #18 on: August 20, 2014, 09:05:23 am »
Haha...thx Mike. I can almost hear the ABBA song....its Dacing Queen huh!
Genotype 1a

Offline Picnic

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #19 on: August 20, 2014, 09:36:53 am »
Anette,
Sooooo Happy for you!!!!! Your liver is finally on a vacation after all these years. Rest well liver and Anette please celebrate this fantastic event!! Larry
Larry

Offline Anette

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  • Soon just transplanted, not transplanted with Hep
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #20 on: August 20, 2014, 09:43:08 am »
Thank you too Larry. I will follow your reports from your testresultat too. Im so convinced that you will join me in the zeroclub soon.
Genotype 1a

Offline Picnic

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #21 on: August 20, 2014, 09:45:48 am »
Thanks! I hope to get results today or tomorrow!!!
Larry

Offline Anette

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  • Posts: 61
  • Soon just transplanted, not transplanted with Hep
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #22 on: August 20, 2014, 10:06:18 am »
I cross my finger and toes for you. Please write here as soon as you can to let me/us know! Deal?
Genotype 1a

Offline Krissy

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  • Posts: 35
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #23 on: August 20, 2014, 10:42:20 am »
Annette, I am so incredibly happy for you!
Gen 3a, VL 3.4 mil, TX Naive, CURED!!!

Offline Anette

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  • Soon just transplanted, not transplanted with Hep
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #24 on: August 20, 2014, 11:08:02 am »
Thank you Krissy. I found myself walk around in the apartment smiling whole the time. I even talked to myself in the mirror and say loud tomyself....Anette...get it, you are cured!!!
I dont do  that other times hehe...just today!
Genotype 1a

Offline Mike

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #25 on: August 20, 2014, 06:20:52 pm »
Hi Anette,

Yes I was thinking of Dancing Queen. What a great song for this day! The only problem: I can't get it out of my head ♪♫♪♫ (lol).

I'm so happy for you an hope you're dancing a jig!

https://www.youtube.com/watch?feature=player_detailpage&v=xFrGuyw1V8s

Best wishes, Mike
« Last Edit: August 20, 2014, 06:24:55 pm by Mike »
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Anette

  • Member
  • Posts: 61
  • Soon just transplanted, not transplanted with Hep
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #26 on: September 12, 2014, 01:54:54 pm »
Sunday i have made a 12 weeks session of treatment. My doctor said i shall do 4 weeks more, just to be sure. Im still zero but he want me for 4 weeks more anyway. Lately i got a devils headache. Dont like it at all. Sometimes it will stay for 3 whole days in a row. Under this circumstances i found a job!!! So please pray i can do what im supposed to do so i can keep the job. I hope the sideeffect will disapere. 12 october is my last day.
Genotype 1a

Offline Krissy

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #27 on: September 12, 2014, 05:32:54 pm »
You can do it Annette!  Think positive thoughts.  Congratulations on the new job and best wishes!
Gen 3a, VL 3.4 mil, TX Naive, CURED!!!

Offline Krissy

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #28 on: September 12, 2014, 05:33:37 pm »
You can do it Anette!  Think positive thoughts.  Congratulations on the new job and best wishes!
Gen 3a, VL 3.4 mil, TX Naive, CURED!!!

Offline Mike

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #29 on: September 12, 2014, 07:07:27 pm »
Hang in there Anette,

Sounds like you've slayed the dragon and the doc just wants to make double sure.

Congrats to the new job!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Anette

  • Member
  • Posts: 61
  • Soon just transplanted, not transplanted with Hep
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #30 on: October 13, 2014, 11:42:17 am »
16 weeks=im done!!!!! Now lets se how long i shall wait until my headache say goodbye to me for good!
Genotype 1a

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #31 on: October 13, 2014, 12:05:13 pm »
Congratulations Anette.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Mike

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #32 on: October 13, 2014, 12:14:03 pm »
Congrats, Anette!!!

I know it's been a long road for you. Looks like the journey is coming to an end!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Krissy

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #33 on: October 13, 2014, 11:01:45 pm »
Congratulations!  You did it!   Now you can start the rest of your (healthy)  life.  Hope the headache goes away now. 
Krissy
Gen 3a, VL 3.4 mil, TX Naive, CURED!!!

Offline Anette

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  • Posts: 61
  • Soon just transplanted, not transplanted with Hep
Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #34 on: October 14, 2014, 01:50:41 pm »
Thank you so much! It feels better today, maybe i imagine that or maybe it is so. Im so happy this is over. I take a new bloodsamples in 4 weeks an last 3 month test in 12 of january. After that if everything looks fine i be kicked out from the infectiondepartment in the hospital for ever! Once again, thx for your suport! And good luck to you all too.
Genotype 1a

Offline Mike

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Re: If you are a liver transplant, let me know. Changing experiences?
« Reply #35 on: October 14, 2014, 04:14:16 pm »
Hi Anette,

I know the wait for the 12 week post treatment results can be a bear.

But the treatment is done, the virus is undetectable and it should remain undetected from henceforth!

What a great day!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

 


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