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Hep C Discussion Forum -> General Discussion -> liver
Post Info TOPIC: liver
Cinnamon Girl


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RE: liver
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Hi again William, just wondering which hospital will be doing your transplant, will it be one of the London hospitals?  I know there aren`t many NHS transplant centres in the UK, 6 or 7 I think.

By the way, the British Liver Trust is a good resource for information regarding transplantation.  I`m sure you`ve been given plenty of information and will continue to receive it, but here`s a link to their website anyway.  This page includes a downloadable publication...British Liver Trust - Transplantation

. 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
basser


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i want to thank everyone for their reply to my post.it has really lifted my spirits.i do feel blessed finding this forum.it has helped me so much.god bless you all                                                      william



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 william.61 yo.lives in uk.geno 1b.started sol/dac/riba sept 2014 12wks.am now svr and now had liver transplant on 19/07/ 16
Linuxter


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Hi William,

Wishing you the best here as well, our thoughts are with you as you move forward.

May all go smoothly and I hope we find you feeling better soon.

 

Be Well,

Dave



__________________

63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 
Shadowfax


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I am with the rest of them William and wish you all the best.

The fact that we can have living donors is a bit of a comforting thought to me. I am F4 and foresee that is the future as well.  Keep the faith, I have a step-daughter that had a double lung transplant coming up to 11 years now and then a kidney transplant just last year. The kidney was also a living donor. I only mention this because they really know what they are doing these days so you should be in good hands.

Our thoughts are with you and please keep us posted.

 

SF



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
Cinnamon Girl


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I`m sorry to hear this, William, you`ve come such a long way achieving your SVR and coping with your recovery and you`ll get through this with the same courage and determination you`ve shown all the way through, I`m sure.  You know you can count on getting as much support from us as we can give you, and we`ll do all we can for you during this process and beyond.

You`re a fighter and a seasoned dragon slayer, and a new liver will offer you the chance of a fresh start and a new lease on life, so do your best to stay positive and take it one step at a time.

Keep us updated, we`ll be with you all the way... smile

 

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Ari-anna


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I agree with others that a transplant category on this site would be useful, particularly as we know each other's stories making it easier to continue the journey.

I am under the local Liver Transplant Unit although not currently in line for a transplant I have been through the initial process. Like Syd has said, it is hugely confronting and challenging process. I found the thought of placing an organ from someone who has died inside of me so I could live  to be just downright weird and difficult to get my head around.

Aroha

Ari

 



-- Edited by Ari-anna on Sunday 6th of March 2016 07:58:50 PM

__________________

Genotype 1a diagnosed 2005, Cirrhosis.

Pyglated Interferon/Ribavirin 2006, non-responder 

Viekira Pak/Ribavirin 24 weeks, virus undetected EOT 12 weeks SVR Feb 2016

New Zealand 64 yo
wmlj1960


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Hi William.

 I'm sorry to hear this news in a way but happy for you to have the chance at getting a healthy liver and the many benefits that go with it. I know a few people who have had transplants that are living a healthy life without the problems that go along with a badly damaged liver. I wish you well with a successful procedure and a better life afterward. Don't forget to enter 'transplant' in the search function on this forum to access 13 threads focused on transplant issues. Keep us up to date as you progress with this. smile



__________________

60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

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Tig


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Hi William,

Hey my friend, do your best to keep your spirits up. I was hoping that the cirrhosis would improve as well, but it wasn't in the cards. Try and look at it this way, you have achieved SVR and the extra hepatic complications from further HCV progression have ended. You are fortunate (yes, fortunate) to be able to have this chance, many are not able. That doesn't make it easier, but it gives you continued reason to fight. It also gives hope to your family there and your family here. It's your chance to live the healthy life you started when you sought HCV treatment. You destroyed your Dragon and now you'll simply have to destroy it's old breeding grounds by replacing it. Clearing the virus pre transplant is a monumental achievement, right? You don't have that to do post transplant, what a plus!

Nothing is easy, but I know you will prevail. Cross all the T's and dot all the i's. You will have our never ending support. I have added a couple links to support groups in the UK and will see about establishing a specific section for transplantation info. Hang in there my friend. You'll make it through this, there's no reason to go negative now! Look how much you have accomplished!

http://www.pscsupport.org.uk/support-groups-transplant-units

http://ipsite.org/3fiv



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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JoAnneh


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Bassar,

I think if you start a category for transplants on this site many will benefit from it.

I would certainly like it as I am F4.

Wishing you the very best! 

JoAnne



-- Edited by JoAnneh on Sunday 6th of March 2016 01:46:39 PM

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
Sydhanrahan


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Hi William,

sorry to hear you may need to go down this path. On the plus side liver tfans plants have one of the best survival rates of any organ that needs transplanting.

i had my appointment at LiverTransplant Clinic three weeks ago. Just so I would be in the  system if my liver continues to deteriorate. Do you have something called a Meld score in the Uk? here the cut off point for eligibility is 15. I was 13 when I started and have currently gone down to 10. this is great news and I am pleased but basically they don't know why some people get better after treatment and with cirrhosis and others continue to get worse. They think it's a genetic thing but not known for sure yet.

this is a great site. Why don't you start your own transplant category? You may find many others with similar experiences,will come forward.

i found the idea that I might be sick enough to need a transplant, very confronting and can only imagine the turmoil of emotions you must be going through now. 

Good luck  your journey.

Sincerely yours,

Syd.

 

 

 



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Contracted Hep C 1969. Genome Type 2, treatment naive. Began 12 week RIBA/sof/Dac on 12/11/15. Cirrhosis. VL before treatment 4m. Treatment extended another 12 weeks without Riba. No virus detected at 9 weeks.
mallani


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Hi William,

Sorry to hear your news. Cirrhosis can be a disease in itself and rumble on even when the cause is removed.

The classification of cirrhosis at start of treatment leaves a lot to be desired. If we had a better grading system it would help distinguish between those who should get some reversal compared with the 20% for whom SVR does not help. It mostly depends on how much damage has been done by the fibrous scars.

Best of luck with the transplant and hope you can find a Forum.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
wendyo


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so sorry to hear this William. But let's keep the faith that you will get a new liver and will gain improved health in the not so distant future. You are in my prayers.



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 
basser


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would a great help to some people to have a post for persons like me who have cleared the virus but have sustained so much damage that a transplant is the only option.was only told on wednesday that it was the only way.after tx things looked a lot better liver wise.my system was not having to battle the virus.was hoping that i would not have to go this route.am still coming to terms with the news.have the medical to go yet and they put aside an afternoon for family and friends to answer any questions that people ask.thanks for all your swift replies.all the very best health to you all                                                                                                                        william



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 william.61 yo.lives in uk.geno 1b.started sol/dac/riba sept 2014 12wks.am now svr and now had liver transplant on 19/07/ 16
Gracie


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Sorry to hear the news William. This stupid virus has been slowly damaging all of our livers. and while SVR stops further damage, the old damage is still there. It's something that some improve and some don't. I wonder what the deciding factors on that are. I hope you have a turnaround, and it does start to improve. I know it can take years to do that. There are others on here who need transplants and some will need them as well in the future, so start a new post as I'm sure it's needed here. 



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
Groupergetter


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Hi William, hoping and praying everything works out the best for you. 



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Ari-anna


Veteran Member

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Sorry to hear you have not been able to recover your health post treatment, it seems most unfair.

All the best with getting a liver transplant - bloody marvellous you have this opportunity. Hope you can find the support you are looking for. It's possible the transplant unit will put you in touch with others in your situation.

Kind regards

Ari



__________________

Genotype 1a diagnosed 2005, Cirrhosis.

Pyglated Interferon/Ribavirin 2006, non-responder 

Viekira Pak/Ribavirin 24 weeks, virus undetected EOT 12 weeks SVR Feb 2016

New Zealand 64 yo
basser


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been 15months since eot.am svr.liver though hasn;st got bettet.stayed stable for a fair while due to getting rid of virusbut last few months has been going down hill.so everything going good when i go for 5 days to hospital for complete medical will be put on transplant list.i was f4 cirrhotic when i went on tx.did hope that liver would get better.shame but to much damage done.so hopefully all going well have a good future.just wondering if anyone knows of a good forum for people waiting for transplant or have had one.cant find one in uk.best of health to you all                                                                                                                                                                     william



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 william.61 yo.lives in uk.geno 1b.started sol/dac/riba sept 2014 12wks.am now svr and now had liver transplant on 19/07/ 16
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