after a year with new kidney

[bountyhunter_ga]

 Hello friends, well we are still fighting the awful BK virus. My doctors are at their wits end, everything like the book only it won't go away.
I was scheduled for a biopsy on my kidney last week but during the process they noticed my bladder extended somewhat and stopped.
Sending me back to the clinic at Piedmont Hospital in Atlanta,Ga. The doctors did another damn catheter on me and to empty fluid, during the testing they looked at blood flow and determined the kidney was fine it was either the bladder or prostrate causing all the problems now.
 I go back in Sept 29 to do labs again and see urologist now.
I guess I'm still lucky even with other problems. Thanks guys

[tyefly]

Ok   I need to know what a BK virus is..... they are wanting a urine sample to test for that.... I have not heard of that...   

[The Noob]

my real personal question, decline if you want and i will not be offended..
would you do it over again? 

[C904]

Well it is not much consolation, but at least the kidney seems to be ok.  Hopefully they can get everything in check.  Good luck going forward.

[C904]

Ok   I need to know what a BK virus is..... they are wanting a urine sample to test for that.... I have not heard of that...   

This is debatable, but for my money it is the number one thing I am scared of getting after transplant.  The reason is for some it can wipe out the kidney and it can be very hard to fight off.  I was tested for it routinely the first three months.  Too much to type out about it and if you do a Google search on it you can learn a lot.  Also searching this site has some info and transpalntbuddies site. 

For my money what makes it so scary is that it can easily be missed or misdiagnosed and for some by the time they catch it the kidney has been wiped out.  The key words are FOR SOME, but still educate your self on it and be vocal about testing for it down the road if you have some symptoms that could possibly point to it.

You will sometimes see in the new member section someone mention casually in their introduction that they had a transplant done and lost the kidney to BK.  Don't want to make you paranoid but try and read up on it, because sometimes it is missed by docs.

[lmunchkin]

Have no clue to what BK is, but hoping it does not get you, Bounty hunter!  Sending Hugs & prayers to you.

lmunchkin

[Marina]

My  center  checks  me  for  BK  monthly.         Big  sign  that  something  is  going  on is   low  WBC.
A  friend of  mine had  it,  and  as  soon  as they  lowered  her  drugs,   she  got over  it.

http://en.wikipedia.org/wiki/BK_virus

The BK virus was first isolated in 1971 from the urine of a renal transplant patient, initials B.K.[1] The BK virus is similar to another virus called the JCV since their genome sequences share 75% homology. Both of these viruses can be identified and differentiated from each other by carrying out serological tests using specific antibodies or by using a PCR based genotyping approach.

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.[2] 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.[3]

In some renal transplant patients, the necessary use of immunosuppressive drugs has the side-effect of allowing the virus to replicate within the graft, a disease called BK nephropathy.[4]
It is thought that 1-10% of renal transplant patients progress to BK virus nephropathy (BKVN) and up to 80% of these patients are reported to have lost their grafts. The onset of nephritis can occur as early as several days post-transplant to as late as 5 years.
It is also associated with ureteral stenosis and interstitial nephritis. In bone marrow transplant recipients it is notable as a cause for hemorrhagic cystitis.

This virus can be diagnosed by BKV blood & urine testing, in addition to carrying out a biopsy in the kidneys. PCR techniques are often carried out to identify the virus.[5]

The cornerstone of therapy is reduction in immunosuppression. A recent surge in BKVN correlates with use of potent immunosuppressant drugs, such as tacrolimus and mycophenolate mofetil (MMF). Studies have not shown any correlation between BKVN and a single immunosuppressive agent but rather the overall immunosuppressive load.
No guidelines or drug levels and doses exist for proper reduction of immunosuppressants in BKVN
Most common methods:
Withdrawal of MMF or tacrolimus
Replacement of tacrolimus by cyclosporine
Overall reduction of immunosuppressive load
Some cyclosporine trough levels reported to be reduced to 100-150 ng/ml and tacrolimus levels reduced to 3-5 ng/ml
Retrospective analysis of 67 patients concluded graft survival was similar between reduction and discontinuation of agents.[citation needed]
Single center study showed renal allografts were preserved in 8/8 individuals managed with reduction in immunosuppression while graft loss occurred in 8/12 patients treated with an increase in therapy for what was thought to be organ rejection.[citation needed]
Other therapeutic options include Leflunomide, Cidofovir, IVIG, and the fluoroquinolones. Leflunomide is now generally accepted as the second treatment option behind reduction of immunosuppression.

[okarol]

More info here: http://cjasn.asnjournals.org/content/3/Supplement_2/S68.full
I learned this, "The term “BK” originated from a patient's initials, in whom it was first detected in 1971."

[tyefly]

wow...   I was never told about this risk..... never...  well tomorrow is the urine test for it.... guess its just a routine test.... all my labs look good.... 

so much to learn.....

[bountyhunter_ga]

I wish there was more attention paid to this and a couple more viruses. You can get the virus through the donner as well.
Lets keep up the fight to get better.

[tyefly]

I heard of the CMV  thing.... I was positive and my donor was neg.....   so I guess I cant get that or wont have to deal with that....   today I had a urine test done for the BK virus which came out neg....but they said that they do the test every couple of weeks and then monthly.....   

I hope you get rid of it....   and I am wondering can a person catch it again.....  or after you have it you have the antibodies and then no more problems....??

[Marina]

I heard of the CMV  thing.... I was positive and my donor was neg.....   so I guess I cant get that or wont have to deal with that....   today I had a urine test done for the BK virus which came out neg....but they said that they do the test every couple of weeks and then monthly.....   

I hope you get rid of it....   and I am wondering can a person catch it again.....  or after you have it you have the antibodies and then no more problems....??

Most people have  been  exposed to  CMV  at some point in there  lifes.        The  virus  remains  dormant,  for most  healthy  people.
If you're  positive, there  is  a  chance you  might  have to  deal  with  it  at  some point in your  life  due to a low or suppressed  immune system. 

  Take  care!

Marina

[bountyhunter_ga]

Labs again today, BK Virus is dropping, last week when they put the catheter back in something that looked like a string came out,covered with blood. The doctor sent it to the lab and they never said what it was it was about 10" long. ever since then I have felt a whole lot better,lost over 10lb of weight/fluid I guess. sounds like a suspense. Hang in there it will get better one day.