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Author Topic: going back on the list?  (Read 2911 times)
gkcoley
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« on: December 05, 2012, 08:30:07 AM »

I've had 2 failed transplants.  Once when i was 6, which was a cadaver and rejected in less than 2 weeks and one when i was 18 from my uncle, which worked great for a month before the BK virus shut it down.  For that transplant i had my spleen out and had plasma pheresus for 6 weeks before to demolish my immune system.  I was in the hospital from feb-july of 05 and it still got shut down by the BK virus so it was useless.  Now, at 25, my new dialysis unit keeps approaching me about going back on the list(havent been on it sicne 05) because BK virus never goes away and isnt treatable.  It is dormant til you get a transplant then it kills the new transplant.

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jeannea
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« Reply #1 on: December 05, 2012, 09:23:49 AM »

I guess my question is what are they telling you? Do they just dismiss the BK? Do they not understand? I can understand why you worry. I don't understand why they seem so glib.
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MooseMom
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« Reply #2 on: December 05, 2012, 12:08:24 PM »

Perhaps your new dialysis unit don't understand the risk of tx with the BK virus lying dormant.  They are not the people to advise you.  If you are really interested in a third tx, perhaps you could be referred to a proper tx unit that will have more knowledge in this regard.

It is always possible that there are now better strategies to preserve a transplanted organ in a recipient that is BK positive.  Perhaps there are anti-virals that are available now that were not available in 2005.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
gkcoley
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« Reply #3 on: December 05, 2012, 10:06:54 PM »

this actually auto posted on me before i was done lol, i was also gonna say my doctor said she would research it and see if there is a cure or treatment now.  I just wonder if it will be a repeat of last time.
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jeannea
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« Reply #4 on: December 06, 2012, 10:15:40 AM »

I haven't heard of anything new for BK but if they tell you something please share. I had a BK scare over the summer and I was really scared.
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Riki
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« Reply #5 on: December 08, 2012, 05:45:04 PM »

What is BK??  You know, besides, Burger King... I've never heard of it
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
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gkcoley
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« Reply #6 on: December 09, 2012, 06:03:30 AM »

What is BK??  You know, besides, Burger King... I've never heard of it

It's a virus in your body that can activated when your immune system is suppresssed(like with a transplant) and it will shut down and destroy any newly transplanted organ.  It shut down my kidney i got from my uncle before i was even out of the hospital in 05.  The only treatment that i know of is to stop anti rejection drugs so your immune system can fight it.  Either way, you lose the kidney.
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okarol
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« Reply #7 on: December 09, 2012, 01:13:49 PM »

What is BK??  You know, besides, Burger King... I've never heard of it

here's some info http://cjasn.asnjournals.org/content/2/Supplement_1/S36.full
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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 -
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Riki
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« Reply #8 on: December 09, 2012, 07:34:26 PM »

I didn't understand a word of that
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okarol
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« Reply #9 on: December 15, 2012, 08:05:19 PM »

OK here's the wikipedia version, pared down:
The BK virus was first isolated in 1971 from the urine of a renal transplant patient, initials B.K.
The BK virus rarely causes disease since many people who are infected with this virus are asymptomatic. If symptoms do appear, they tend to be mild: respiratory infection or fever. These are known as primary BK infections.
The virus then disseminates to the kidneys and urinary tract where it persists for the life of the individual. It is thought that up to 80% of the population contains a latent form of this virus, which remains latent until the body undergoes some form of immunosuppression. Typically, this is in the setting of kidney transplantation or multi-organ transplantation.
Presentation in these immunocompromised individuals is much more severe. Clinical manifestations include renal dysfunction (seen by a progressive rise in serum creatinine), and an abnormal urinalysis revealing renal tubular cells and inflammatory cells.
It is not known how this virus is transmitted. It is known, however, that the virus is spread from person to person, and not from an animal source. It has been suggested that this virus may be transmitted through respiratory fluids or urine, since infected individuals periodically excrete virus in the urine. A survey of 400 healthy blood donors was reported as showing that 82% were positive for BK virus.
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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
Riki
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« Reply #10 on: December 15, 2012, 08:25:22 PM »

Is this why antibiotics are given after transplant?  though, I'm not sure if antibiotics would do anything for a viral infection... I'm allergic to sulfa drugs, so I couldn't have the regular drug prescribed.. i had to have an aerosol antibiotic once a month for nine months after the transplant
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
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MooseMom
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« Reply #11 on: December 15, 2012, 10:13:02 PM »

Is this why antibiotics are given after transplant?  though, I'm not sure if antibiotics would do anything for a viral infection... I'm allergic to sulfa drugs, so I couldn't have the regular drug prescribed.. i had to have an aerosol antibiotic once a month for nine months after the transplant

The aerosol antibiotic...was that pentamidine by any chance?
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Riki
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« Reply #12 on: December 16, 2012, 02:23:27 PM »

to be honest, I don't remember what it was.. it was almost 12 years ago, so it could have been anything
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Dialysis - Feb 1991-Oct 1992
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dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
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