BKV AFTER TRANSPLANT.

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BKV AFTER TRANSPLANT.

Postby Grey » Tue Sep 29, 2015 11:30 am

BKV After Transplant.
So there you are, so excited about your new kidney, (in my case 5 months after transplant) the thought of no dialysis and hoping to get a semblance of normal life back when BANG, your bloods start going haywire. Creatine starts rising, white blood cells start dropping and it is clear something is wrong.

In my case by chance a registrar (junior Doctor) noticed that my white blood cell count was very low and as a precaution asked for a series of different blood results. At the same time, although typically the Creatine level worsens gradually, mine jumped from 140/150 to 250 between two 3 week tests.
That was just 10 days ago and I remember sitting there opposite the kidney specialist while he picked up the phone to call the specialist transplant ward upstairs to see if there was a spare bed to admit me. Man my life fell apart in those few seconds. Over and above that I had become a bit lax on the water front, only drinking about 2 L a day. Big shock and wake up call.

Anyway a bit on the epidemiology of the virus.

Humans are the natural host for BKV, JVC and SV40 and it is thought up to 80% of the population carry it in it’s dormant state. The way we get it is varied and may be faecal-oral, food prepared by someone who has not washed their hands for example, respiratory, transplacental, or from donor tissue.

BK virus infection is considered to be contagious between people. Generally the infectious agent may be transmitted by saliva, air, cough, faecal-oral route, surfaces, blood, needles, blood transfusions, sexual contact, mother to foetus, etc.
Begs the question which I will ask at my next clinic visit, why is more separation not given for patients visiting the clinic with this virus? It just so happens that a lady I know who has also just had the virus, sits next to me and chats every time we go to clinic, did catch it from her?
BKV is the consequence of modern potent immunosuppression aimed at reducing acute rejection and improving allograft survival which suppresses the immune system so well that dormant and or caught viruses can take hold.

BKV infections lead to kidney allograft dysfunction or loss.

Decreased immunosuppression is the principle treatment but predisposes to acute and chronic rejection. The only way to treat BKV is to reduce the immunosuppression allowing the immune system to fight the virus but as we are aware this also predisposes a transplant patient to rejection. It becomes a tightrope situation, too little suppression = rejection, too much = BKV killing your kidney.
There are no antiviral drugs that can help.

Just by way of incidence, the emergence of polyomavirus nephropathy (BKV) has coincided with the use of new potent immunosuppressive medications. It is usually associated with BKV, affects up to 8% of recipients, and frequently results in allograft loss or permanent dysfunction. However as already mentioned dormant BKV in one study was found in 80-88% of pre-transplant patients.

A bit about the treatment of BKV virus.

The principal treatment for BKV nephropathy is reduction in immunosuppression.
Various strategies include reduction or discontinuation of any calcineurin inhibitor and/or adjuvant agent, changing from MMF to steroids and in really bad cases from tacrolimus (Prograf) to cyclosporine or commonly known as Gengraf or Sandimmune or Neoral.
The net result of this should be an improvement in your creatine levels, then stabilisation and an increase in your white blood cell count.
When BKV nephropathy (worsening performance of kidney measured by creatine level) is diagnosed early within the first 6 mo after transplantation and the creatinine is stable, survival is improved compared with when the diagnosis is made later and the creatinine is elevated.
In my case the noticed my white blood cell count was very low, after investigation realised my creatine had worsened badly, did more tests and found the BKV traces. Immediately stopped the MMF (cellcept) and started me on a steroid, which by the way is also a form of immune suppression but less aggressive with a side effect of encouraging white blood cell growth necessary to fight the virus.
I will keep adding as and when new developments happen.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
Grey
 
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Location: Chester

Re: BKV AFTER TRANSPLANT.

Postby wagolynn » Tue Sep 29, 2015 2:39 pm

Hi Gray,
I like your post, it should be a big help to others.

I hope you are soon clear or at least have it under control.
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Re: BKV AFTER TRANSPLANT.

Postby AmandaClare » Tue Sep 29, 2015 5:46 pm

Grey, sorry to hear about this complication. It's cruel it happened just when you were getting your quality of life back. Hope its soon under control.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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Re: BKV AFTER TRANSPLANT.

Postby MandyA » Tue Sep 29, 2015 6:11 pm

Hi Grey,

I was diagnosed with BKV virus in January.

I stopped taking MMF.

By August, the virus had receded, and I was able to start taking my MMF again.

However, I do seem to remember that there was one member of the forum who took about a year to clear the BKV virus.

Regards,
Mandy
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Re: BKV AFTER TRANSPLANT.

Postby Grey » Wed Sep 30, 2015 9:24 am

Hi Mandy Yes After doing a bit of research, reading peer reviewed articles, which I need to read many times each before understanding, anyway it seems it firstly depends on at what stage the virus is when they detect it, there are 3 basic stages, Viruria then viremia then nephropathy. It also depends on weather the virus is detected within the first 6 months after transplant or later. Again depending on circumstances it can take anywhere between 1 month to more than a year and we do well to remember what we are talking about is simply suppressing the virus, not eliminating it. It remains dormant and can re-emerge at any time during a weak period in our health. Lots of fun hey !
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
Grey
 
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: BKV AFTER TRANSPLANT.

Postby chessnut » Wed Sep 30, 2015 3:16 pm

thank you for the detailed post grey. this sounds like something all of us waiting for a transplant should be aware of. I don't think I had come across BKV before.

I hope you soon have things back under control.
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Re: BKV AFTER TRANSPLANT.

Postby SKM23435 » Thu Oct 01, 2015 4:22 pm

Grey

Sorry to hear about this.
Brilliant synopsis.

It's a reminder that despite our transplants we never really get free of our kidney failure and "back to normal". We are always at risk of things that don't affect other people.

It's just starting to sink in that a transplant is really just another form of treatment and not a cure (I know we've been told this all along). We are renal patients for ever.

Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
SKM23435
 
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Re: BKV AFTER TRANSPLANT.

Postby Grey » Fri Oct 02, 2015 10:53 am

Sue my dear, you are right, but even with all my problems past and present I feel treatment certainly improves the situation and remain very grateful for it (as I am sure we all do) Keep smiling !
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
Grey
 
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: BKV AFTER TRANSPLANT.

Postby sporti » Tue Oct 06, 2015 3:53 am

Hi Grey

Really sorry to hear this. It seems they are very much on top of this and here's hoping things will get back to how they were before. Thank you for the synopsis. I had heard of the virus and am tested but I had no idea how we got it. It certainly has made me think as I have been getting a bit lax. All the best to you and keep us informed. Btw still having problems with the dreaded :roll: Prograf
sporti
 
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Re: BKV AFTER TRANSPLANT.

Postby Grey » Fri Dec 18, 2015 8:41 am

Well Wednesday the clinic confirmed, I now also have CMV. Never had it before transplant, donor was positive, now I also have that hurdle to climb. Feeling quiet down right now. Never-ending saga of problems.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
Grey
 
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: BKV AFTER TRANSPLANT.

Postby rheaybou » Fri Dec 18, 2015 9:28 am

Not the best way to start the Xmas period!

It is true, thransplant is not a cure, just a switch of one set of problems for another. Hope this doesn't impact on you enjoying the holiday period, you are in good hands and they have plenty of experience in dealing with this, look after yourself and good luck.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
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Re: BKV AFTER TRANSPLANT.

Postby sporti » Fri Dec 18, 2015 1:48 pm

Hi Grey - Sorry to read your news. Positive thoughts sent to you xx
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Re: BKV AFTER TRANSPLANT.

Postby AmandaClare » Sat Dec 19, 2015 11:48 pm

Sorry to hear it Grey.

If it's any comfort I had EBV and CMV after transplant, and it's still going strong at nearly 28 years out. I'm not sure about BK - I think they may have started monitoring for that more recently.

In fact they were much more blasé about viruses back then. In retrospect catching glandular fever (EBV) within a few months of my transplant was a close call, since it can cause post - transplant lymphoma, but no-one seemed to realise that. Maybe the link was discovered later. When I had a recurrence of EBV a few years ago I got a recall to clinic, careful physical exam and a chest xray.

Hope you're not feeling ill with the CMV. It can make you low and exhausted.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
AmandaClare
 
Posts: 648
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: BKV AFTER TRANSPLANT.

Postby arpitbansalujjain » Wed Apr 06, 2016 2:13 pm

Hi Grey,
a useful post. can you please help me if you have knowledge . its around 4 years of my transplant all of sudden cretinine is rising . CMV and BKV is normal. what could be the reason .
arpitbansalujjain
 
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