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Infections Rejection Vir…

53 members
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Better Labs

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HCV LIVER TRANSPLANT

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BirdGirl's Discussions

Hep C Treatment post transplant

Started this discussion. Last reply by BirdGirl Nov 13, 2012. 2 Replies 0 Likes

Hi there,My husband has been experiencing a rejection episode that is now looking like a Hep C situation that could/may be out of control. In my previous post about rejection, it details the…Continue

Tags: high, virus, count, transplant, post

Post Liver Transplant- Rejection episode question

Started this discussion. Last reply by BirdGirl Sep 12, 2012. 6 Replies 0 Likes

Hi there,I've been my husband's support & advocate during his battle w/ liver cancer, secondary to HCV, prior to transplant, and continuing post liver transplant.He was doing EXCELLENT until the…Continue

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BirdGirl joined Hostess Risé's group

Infections Rejection Viruses

Please join our group and share any experience you have had dealing with infections -rejections. When sharing please mention the type of transplant that you had.This is the place to discuss EBV, CMV, BK virus and rejection and whatever information you think would help others. Thank youSee More

Dec 30, 2012

8 Comments 2 Likes

BirdGirl commented on Hostess Risé's group 'Cholesterol Concerns'

"ps... Omega 3 helped & is still a very good go-to"

Dec 30, 2012

BirdGirl commented on Hostess Risé's group 'Cholesterol Concerns'

"Hi Susy, My husband experienced a very bad liver transplant rejection episode starting in late May. In August, when all else failed, they put him on rapamune. In only a few weeks his legs were solid as a rock ( with what I call concrete fat ), and…"

Dec 30, 2012

BirdGirl joined Hostess Risé's group

Cholesterol Concerns

Do you know your numbers? Has diet or medication help to lower your lab numbers? See More

Dec 30, 2012

8 Comments 0 Likes

BirdGirl replied to BirdGirl's discussion 'Hep C Treatment post transplant'

"Dear Maverick, Thank you for sharing your experiences. The Dr. said my husband is surely "not" a good candidate, but wanted to "try" for the sake of the "liver".... to which my husband said... "Hey... let's…"

Nov 13, 2012

maverick replied to BirdGirl's discussion 'Hep C Treatment post transplant'

"I know this is a very hard decision. AFAIK the viral count is not that important unless on a treatment. I tried once and it felt like I was going to die. (I have taken the treatment 5 times pre and post transplant) I will not take the treatment…"

Nov 12, 2012

BirdGirl replied to Dave's discussion 'Question about Interferon/Ribavirin treatment post liver transplant'

"Hi Mary, My husband and I can surely relate with what you are dealing with. Please keep in touch. It sounds like admitting you for observation during the initial treatment for Hep C is a very wise move, & they should be able to monitor and…"

Sep 25, 2012

BirdGirl and Gene T. are now friends

Sep 25, 2012

BirdGirl left a comment for Laurel

"Hi Laurel, Thanks for the comment. We live 3 hours from SF, thus we don't go to support groups, but thank you! It's not a very good time for my husband to be treated. Rejection vs. Hep C is really tricky. We shall see what happens over the…"

Sep 25, 2012

Laurel left a comment for BirdGirl

"Hi. Welcome aboard. I have everything your husband has. I got my transplant almost 3 years ago. My hep c count is over 7 million. It has been for at least 9 years. I was a non responder.I am waiting to get treated again for Hep C. I do not know…"

Sep 24, 2012

Ono left a comment for BirdGirl

"I had a live liver transplant with my daughter as my donor, and it wasn't at CPMC. However, I had my followup care at CPMC from about 2 months post transplant. I like Dr. Frederick, he's smart, personable and always available via email in…"

Sep 24, 2012

BirdGirl left a comment for Ono

"Hi again, Ono :) Thanks for being so kind. I wanted to ask, did you receive a live Liver transplant? I've read that a live donor liver reacts better to ribavirin/interferon treatment that those from deceased donor's, like my…"

Sep 24, 2012

BirdGirl left a comment for Ono

"Looks like we have the same Dr. He is the 3rd we've had at CPMC. Seems smart, but we haven't gotten as direct of a diagnosis as you, probably because it's , from what he said, a "rare situation," yet added "we have 10…"

Sep 24, 2012

Ono left a comment for BirdGirl

"Do you mind my asking who is his hepatologist ? I'm seeing Dr. Frederick. "

Sep 24, 2012

BirdGirl left a comment for Ono

"Hi Ono~ My husband was transplanted 9/2012 - CPMC as well. Since then he has had about 9, maybe 10 biopsies. They are not being upfront w/ the results. CPMC was, in my opinion, much better run in 2010. They did say he has mild ductopenia (the…"

Sep 24, 2012

BirdGirl replied to Dave's discussion 'Question about Interferon/Ribavirin treatment post liver transplant'

"Hi Ono, Thanks for your insight and relating your experience. I'm not sure if my husband will fair as well as you did. His Doc says it's going to be really hard on him, & really hard on me as a caregiver, and he wants him to start in…"

Sep 24, 2012

Profile Information

Were you a member of our Forum on http://TransplantBuddies.com ?: No

Where did you hear about Transplant Friends?: google

Are You Male or Female?: Female

Share - which illness lead up to you needing a transplant?: advocate for husband who had transplant due to aggressive Hepatocellular Carcinoma , End Stage Liver Disease, & Cirrhosis, secondary to Hep C

Which Organ(s) did you receive? If you are on the waiting list, please share.: Liver

How many years have you had your Transplant for?: 11 months

I am Interested in Transplant Friends because...: I am a support person to a transplant patient who needs support in a community experiencing similar situations

Comment Wall (12 comments)

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At 10:28pm on September 24, 2012, Laurel said…: Hi. Welcome aboard. I have everything your husband has. I got my transplant almost 3 years ago. My hep c count is over 7 million. It has been for at least 9 years. I was a non responder.I am waiting to get treated again for Hep C. I do not know anything about rejection. aybe I will see you at the meeting at UCSF tomorrow from 1-2 on the 9th floor of Long Hospital.

At 7:34pm on September 24, 2012, Ono said…: I had a live liver transplant with my daughter as my donor, and it wasn't at CPMC.

However, I had my followup care at CPMC from about 2 months post transplant.

I like Dr. Frederick, he's smart, personable and always available via email in emergencies.

The one post-transplant problem I had the first year was with my bile duct. I had to have three ERCPs, due to the problem.

Dr.F does like to keep his patients thinking positively but I've never had him deny to answer any question I've asked.

At 4:29pm on September 24, 2012, Ono said…: Do you mind my asking who is his hepatologist ? I'm seeing Dr. Frederick.

At 1:01pm on September 24, 2012, Ono said…: My hepatologist at CPMC in S.F. explained that they try to get the patient out as far as possible ( away from tp date) before doing hep C treatment. This of course, has to do with biopsy results. My two year biopsy showed fibrosis bridging to stage 2 on the 0-4 scale) which is why he said it was time to do treatment.

Has your husband had a recent biopsy ? I would insist on one prior to doing hep C treatment.

Best regards~

At 9:59pm on September 5, 2012, eddie said…: Hi i am 8 months post with a new liver im sure ur husband and i and u n my wife can share lots of war stories congrats to both of you and i am here if either of u wanna vent or ask questions.

At 9:52pm on September 2, 2012, Cisco said…: Hope you had a great b'day. Sorry I missed wishing it for you this morning.

At 5:46pm on September 2, 2012, Hostess Risé said…

At 12:16pm on September 2, 2012, Mr. T said…: Helloo BirdGirl, Happy Birthday. I hope you have a Good Day and your husband is doing much better.

Mr. T