I'm three weeks post transplant, everything looks good and I'm feeling good, no obvious side effects from medication. However this morning, I was told they found BK virus in my urine with 5 log/ml. If this keeps increasing it make eventually leak into the kidney and hurt it, and there is no effective way to fight the virus except tapering down the immunosuppressants to wake up immune system a little bit. This could hurt the new kidney as well if rejection happens.
I don't have idea about the number, I was just told it's not a lot at this time but they will keep an eye on it. My current medication is 1000mg Cellcept twice a day, 10mg Prednisone/day and 7mg Tacro/day (4 morning and 3 night). Does anyone know if it's common to have that much of BK virus in urine or anyone experienced the same thing?
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Colin_CX
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Hi Colin. I don't know how to put a question and ask for advice so sorry in advance if this isn't appropriate. I haven't been on here for 7 months. I'm desperately asking advice if you or anyone knows if my kidney symptoms are kidney related,? If you could help me please reply first. Thanku!!
I am 10 months past transplant. I accepted a kidney with Hep C and did a 12 week program of Mavyret to which I no longer show any signs of Hep C. I remember during my visits I was given the BK vaccine 3 times over the year and grateful it hasn’t shown up. If BK virus does show up I know they reduce the meds so the immune system can kick in. It is a risk but the transplant team will monitor you. Also keep your family Dr. informed as well. Watch your diet and drink lots of water. Ask questions of your transplant team. I had my blood draws twice a week and was monitored very closely. Eventually it went to once a week, recently twice a week and now I am once a week. After blood draw results the transplant team always called to tell me meds remained the same or they were changed.
I remember when I first had my transplant I was on CellCept 1000 mg twice a day and prograf 1 mg in the am and 2 mg in the evening. Now I am on 750 mg of CellCept twice a day and prograf 1mg in the am and 1.5 mg in the pm.
During some episode I remember they reduced my Cell Cept to 500 mg twice a day and introduced 10 mg of prednisone and still on the same prograf dosage.
Your meds will change based on your blood draws.
I was having issues with vomiting and extreme sweating to which I would sweat so much my hair would be soaked which started four months (June)after transplant and although I asked questions of my transplant team it wasn’t until I spoke with my family Dr. where I saw things moving for a diagnosis. I saw a GI specialist who monitored my symptoms and told me on the next vomiting episode they would do an endoscopy to find out the results.
A month before my nephrologist ordered an ultrasound of my liver and gallbladder. My liver enzymes were still high. I never heard the results from my nephrologist. Of course my next episode happened on a weekend (Friday the 13th). I went to the ER and problem was finally resolved. I had an endoscopy which found I had stones in the bile duct and the gallbladder duct.
So now I had an endoscopy and my gallbladder removed. I am happy I survived both of those operations.
Try not to stress, although I know it’s frustrating and of course we all are worriers. It’s our new normal but just stay positive and watch your diet and water. Wishing you the best and keep us informed.
Thanks for the information! My transplant team is watching closely on everything, the kidney is doing fine now, I will have a lab draw tomorrow and meet my doctor, hopefully I'll have some update tomorrow. Also, congrats on your transplant!
I am 10 months post-transplant, and have BK now at a concerning level. I am off CellCept and on Prednisone. Same tacrolimus dose.
As I understand it, BK virus is common; we get it as children; it looks like a cold and our immune system kicks it aside. However, the virus lingers latent in our body, and the immune system kicks it aside again if it tries a comeback. However, our post-transplant immune systems are not at full strength, and the BK can come back. So, the plan is to let the immune system rev up some by stopping the CellCept, so it can kick the BK aside again, and the Prednisone helps prevent rejection until you get back on the CellCept when the BK is gone.
I started the process two weeks ago, and am going tomorrow for the first set of tests to see if the BK is going down. Others here on group have said it takes about 2 months to knock it out, but it is not uncommon.
Congratulations on your new kidney. I am so much better now than a year ago, and this BK episode has been my only bump in the road. Good luck!
Yep, they told me if the amount is more than 9 log/ml in urine, they will have to reduce some medication so my immune system will kick in, the worry is my donor's kidney is so tiny, so if there is a rejection, the kidney will be damaged very quickly. At least now it's only 5 log/ml. I'll have an appointment tomorrow along with lab draw. So I'll just keep watching on it closely. Thanks for the info and congrats on your transplant!
I had BK 6 months after my transplant. My doctor took me off immunity suppression myforic for two weeks. My body killed it off then the immunity suppression drug went back to normal dose. BK still gone and hope to never see it again!
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