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Author Topic: Is it time to be on a transplant list?  (Read 9159 times)

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Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Is it time to be on a transplant list?
« on: August 13, 2015, 02:43:51 pm »
Hi all
I was wondering what the next step for me should be
Lately I have been having a lot of pain in my liver area that radiates to my back.  It feels like my insides are inflamed and swollen so I am thinking maybe it is time to find out more about liver transplants.  I know I am probably not at that stage yet but how does one go about getting on a list?
Does anybody know what the requirements are?

80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Is it time to be on a transplant list?
« Reply #1 on: August 14, 2015, 02:14:44 pm »
It starts with a diagnosis of cirrhosis. If you aren't there, then you aren't anywhere near the listing process. If you are there, then ask your doctor to refer you to the closest liver transplant center for evaluation. Pain, in and of itself, is generally not a predominant symptom of end stage liver disease.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Is it time to be on a transplant list?
« Reply #2 on: August 15, 2015, 08:33:02 pm »
Thanks for your reply.  I have been diagnosed with cirrhosis .  I will talk to my doc next time I see him. Glad to know that the pain may not be what I'm thinking.
Thank you for all that you do.  If it wasn't for one of your articles I never would have found this forum  :)
80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Is it time to be on a transplant list?
« Reply #3 on: September 09, 2015, 03:52:39 am »
Do you know your MELD score?

From what I understand you have to have a MELD of at least 12 and more likely 15 to even be on the liver transplant list depending on the transplant center and most people being transplanted have a MELD around 30.

That being said with having cirrhosis a liver transplant center is best equipped to follow patients with advanced liver disease so it is a good idea to get on the radar of a liver transplant center even if you are not to the point of needing a transplant. My liver doctor is part of a liver transplant center in Seattle.

Good luck
Lynn
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

 


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