Hi - my dad received a kidney transplant about 4 months ago and at first everything looked great. But recently it showed he had the BK virus. First they lowered his CellCept dose and two weeks later the virus had increased. So they removed CellCept completely and his virus levels were coming down. However, his creatinine increased from 1.2 to 1.6 so they decided to start him on IVIG which he currently is at the hospital doing.
The other worrisome part is I noticed his WBC has been lowering every week since his transplant. He started at 6.0 before transplant and now he’s at 1.15.
I’m just so worried for him on all fronts and anxious what this means. Sometimes we feel like dialysis was almost easier since he’s been so immuno suppressed we can’t even go anywhere and he’s at the doctor so often now.
Would love to hear everyone’s experiences with this. Thank you!
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Nyc147
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Howdy,Sorry to hear of your dads troubles. I’m just about 1 year post with a living donor kidney. Similar to your father I’ve had both BK and low WBC (eg neutropenia). In first week of July my virus levels were 6500 copies. As of Thursday is wasn’t detectable in my blood. They reduce my TAC from 3.5 to 2 in order to fight infection. During this period my creatinine went from 1.2 to 1.4. But as of Thursday in went back down to baseline of 1.2.
Also, I watched my WBC decrease every month until my nuetrophils were extremely low. They removed my anti virul and snd stopped bactrim. WBC and neutrophils bounced back almost immediately. Im now on bactrim ds 2x weekly.
From a overly anxious patient perspective, the prospect of having Bk and low wbc was scary for me. However, my doctor loudly said it seems like every other transplant patient gets BK.
It’s sounds like your a good advocate for your dad. Cool! Everyone needed an advocate. Also, make sure to follow the doctors orders to the letter. As many questions as I ask I believe they think I’m nuts. Nonetheless, apparently they really know what they’re doing. They have not led me astray as of yet.
I’m nervous as they decided to do an allosure test to just check for any possibility of rejection. Even though we’re w very good from last weeks labs it still makes me nervous.
Sending positive vibes your way. And, as my wife would say, make sure you take care of your own self as well.
Thank you for your reply and I’m glad everything worked out for you! fingers crossed for my dad as well. Hopefully his Bk virus will be gone after the IVIG!
He is seen at a major institution in NYC so unfortunately it has its pros and cons. The cons is that we barely get more than five minutes with the doctor and the nurse is not amazing and takes forever to get back to my questions. Sadly this means I have to google and go on forums to get a lot of answers! So thank you so much for taking the time to reply.
Oh my gosh! Are stories sound similar. We are in Chicago at a busy university hospital.
Pre transplant nurse was amazing. We had her for nine months and she is still an advocate for me snd wife. First, post transplant nurse was terrible. NEVER returned my calls or answered questions. I finally complained. Voila! Finally have a new post nurse, while not like our pre nurse, at least calls me after ever clinic visit.
Since I’m the fourth person to have kidney transplant in my family — we all have PKD — I know that asking questions is vitally important to advocating for one self.
I live in Peoria area and my team is great. I can not imagine being unable to make contact when you have important questions to ask. Thanks for sharing.
I’m fairly lucky with my transplant nephrologist. He is the director of the program and an MD and dr of pharmacy. I suffer from anxiety and depression so he suggests my wife and I try dancing as a cure.
I'm two years out and things do generally get better in terms of immunosuppression and the amount of doctors appointments. I can't speak much to the WBC or BK virus but it abounds like his doctors are monitoring him closely. Often times with immunosuppression therapy it takes a while to adjust the meds and get the recipient to a stable place. Hope it all works out!
Hello I’m 9 years post transplant be careful with Bk it can come back. Your dads count for bk isn’t to bad it will go down but his WBC seems extremely low I’d be asking about that. I know when I had BK they did give me a transfusion of whole clean blood as I was low. I did have several biopsies to make sure I wasn’t rejected. Read about Bk it’s a virus your sonar had in their body and once you get it you are susceptible to it and should test until it’s gone and then make sure your coordinator tests it every year. It’s not bad no side affects but you need to watch it don’t miss a year that’s how I got it back. Once it’s found your doctor will play with your meds until it’s gone just follow instructions and it will go away but it does take a few month. I don’t this I big will get rid of it but maybe. Good luck and watch the blood count it’s low. God less and stay cool and calm just be there for dad and make sure he follows the dose changes until BK goes away.
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