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Author Topic: Transplant with Hep C ?  (Read 6131 times)
Jenna2007
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« on: September 22, 2007, 07:09:14 AM »

Hello All :)

Does anyone  had a transplant along with Hep C infection ?

Please share you experience about this

Thanks :)



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paris
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« Reply #1 on: September 22, 2007, 09:16:36 AM »

Read "Amanda got the call day before my wedding"  Could be helpful.
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
frankieb
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« Reply #2 on: September 22, 2007, 10:33:17 PM »

:waving;  Hi Jenna,
Yes,  Hep C positive a long time.  First diagnosed in '85 was told I had non-A/non-B,  later it was renamed(hep C).  I had my first transplant in '91 lasted until this past July.  No problems with the virus(still dormant).      Treatment as you may know is "interferon", a strong drug with wicked side-effects.  I was told that  it would be worse for me being immuno-suppressed and there was a small chance that the treatment could damage my kidney. Thats ALL I needed to hear, I decided against treatment and my doctor agreed.  Let sleeping dogs lie I say.   
In the meanwhile  :beer1;
My beautiful sister is donating a kidney to me next week, so I hope my hep c stays dormant for at least another 20 years.
 
peace, Frankie
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FrankieB


ESRD DIAGNOSED 10/20/82                                                                                         
Dialysis- 12/20/83-5/18/91
Kidney transplant  5/18/91-7/18/07
Dialysis- 7/18/07- 9/24/07
Kidney transplant date 9/25/07 from my Hero, Donna
Thank You God for my SISTER,  Love you Don
Jenna2007
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« Reply #3 on: September 25, 2007, 05:41:43 AM »

thank you paris & Frankieb!

Frankieb .. hope everything went well today for both of you !
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Sluff
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« Reply #4 on: September 25, 2007, 06:14:57 AM »

Good luck Frankie B.
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Jenna2007
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« Reply #5 on: September 26, 2007, 09:10:25 AM »

Any news about Frankieb and Donna?
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #6 on: September 26, 2007, 09:17:02 AM »

Any news about Frankieb and Donna?

Their surgery was scheduled for yesterday, so hopefully we will know more in the next few days!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Jenna2007
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« Reply #7 on: March 09, 2008, 01:10:15 PM »

Hello Frankie ...
Hope u r doing well ..

You said your virus is "dormant", does this means the virul load is zero ? (PCR Quantitative = 0 )

Thanks


:waving;  Hi Jenna,
Yes,  Hep C positive a long time.  First diagnosed in '85 was told I had non-A/non-B,  later it was renamed(hep C).  I had my first transplant in '91 lasted until this past July.  No problems with the virus(still dormant).      Treatment as you may know is "interferon", a strong drug with wicked side-effects.  I was told that  it would be worse for me being immuno-suppressed and there was a small chance that the treatment could damage my kidney. Thats ALL I needed to hear, I decided against treatment and my doctor agreed.  Let sleeping dogs lie I say.   
In the meanwhile  :beer1;
My beautiful sister is donating a kidney to me next week, so I hope my hep c stays dormant for at least another 20 years.
 
peace, Frankie
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Amanda From OZ
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« Reply #8 on: March 11, 2008, 07:50:02 PM »

Jenna, dormant does not mean your viral load is 0.

If your viral load goes down to 0, it's safe to start to think you are either in remission or have fully recovered from hepatitis c. (depending on the time frame you are on remission for).

You would consider the disease "dormant" if you show no signs of symptoms and if your liver enzymes are all stable and okay.

Amanda
xxoo
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frankieb
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« Reply #9 on: March 12, 2008, 09:51:23 AM »

these are my lab results are from last month

HCV RNA IU/ml     ---    605000    (291000 back in 2001) ..............   Normal is  <50 IU/ml

HCV RNA,QN,PCR     ---    5.78      ..............    Normal is   < 1.70   1og  IU/ml

And what Amanda said... TRUE,  but sadly there still is no cure for Hep C.   Alot of people on the hep c forum swear by milk thissle(sp?) but I've never tried it. 

Just got your PM,   Sorry about your friend, glad she got another transplant.  Do you know her PCR? / Genotype,subtype?  I think the genotyping determines the severity of the Hep c

you have,  mine is genotype 1 subtype 1a.    :cuddle;  for you and your friend

peace,  Frankieb



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FrankieB


ESRD DIAGNOSED 10/20/82                                                                                         
Dialysis- 12/20/83-5/18/91
Kidney transplant  5/18/91-7/18/07
Dialysis- 7/18/07- 9/24/07
Kidney transplant date 9/25/07 from my Hero, Donna
Thank You God for my SISTER,  Love you Don
Jenna2007
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« Reply #10 on: March 13, 2008, 12:30:10 PM »

Do you know her PCR? / Genotype,subtype? 

Thank  you Frankie & Amanda ..

PCR = 7.431
Normal Liver Function & no symptoms
Don't know Genotype !

Have you had a biopsy before ?

 :cuddle;
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st789
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« Reply #11 on: April 14, 2008, 08:48:13 AM »

How to keep the virus in dormant for such a long time?
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annabanana
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« Reply #12 on: April 14, 2008, 08:40:22 PM »

st789...I think the best way to keep HepC at bay is to have a very healthy lifestyle. Take extra-good care of your liver. My husband has not done that, and now he has all kinds of problems related to HepC. But everyone is different. Some people never even have one problem with it.   
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caregiver to Randy:
HepC and stage 4 ckd
1 kidney removed (cancer)Aug07
kidney4traci
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« Reply #13 on: April 14, 2008, 09:02:13 PM »

I don't have much to add, have not had transplant yet, but through the work  up they saw elvated liver enzymes.  I never knew I even had Hep C.  I have been lucky in keeping my numbers low too, and still on the transplant list post treatment with the interferon. 
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Married - three children.
Alports female, diagnosed ESRD 10/04
11/04  Hemo in clinic
6/07 hemo at HOME! 
2/3/09 - Transplant from an angel of a friend!!!
annabanana
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« Reply #14 on: April 15, 2008, 06:58:17 AM »

Here's info I got on MedHelp HepC site: a HepC positive on the transplant list can take either a healthy kidney or one that has been infected with HepC, so really you have more "choices".
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caregiver to Randy:
HepC and stage 4 ckd
1 kidney removed (cancer)Aug07
Jenna2007
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« Reply #15 on: April 19, 2008, 07:21:35 PM »

Here's info I got on MedHelp HepC site: a HepC positive on the transplant list can take either a healthy kidney or one that has been infected with HepC, so really you have more "choices".

annabanana , can you post the MedHelp link ? I'd like to email it to someone ..

Thanks  :waving;
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Jenna2007
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« Reply #16 on: April 19, 2008, 07:24:17 PM »

I don't have much to add, have not had transplant yet, but through the work  up they saw elvated liver enzymes.  I never knew I even had Hep C.  I have been lucky in keeping my numbers low too, and still on the transplant list post treatment with the interferon. 

kidney4traci,
For how long did you get the treatment ? 48 weeks ?
what is your viral load post treatment?

Thank you  :waving;
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annabanana
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« Reply #17 on: April 20, 2008, 06:26:15 AM »

Jenna, here is the forum I go to:

http://www.medhelp.org/forums/show/75

MedHelp also has a transplant forum that's great. This one might suit your needs better. Go to the MedHelp home page and you'll find a list of forums to join.

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caregiver to Randy:
HepC and stage 4 ckd
1 kidney removed (cancer)Aug07
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