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BK Virus

Katie79Katie79
in Early recovery

Hi there

Does anyone have any insight into BK Virus please? My son (18, day 34+) has it.

He was having difficulties passing urine, painful and not feeling like he’s emptied his bladder. However that has subsided but his urine is still dark orange/red.

He’s feeling really unwell, he’s sweating but his temp is fine, he also has sickness and diarrhoea.

Just wandering if anyone else has experienced these symptoms. I wonder if it’s related to the BK or just a coincidence.

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Comments

  • chelle_16chelle_16

    Hello Katie

    First of I want to introduce myself, I'm Michelle one of the Online Community Champions here at Anthony Nolan and stem cell recipient.

    I'm so sorry to hear your son has the BK Virus I can imagine this is causing you both a lot of anxiety. It sounds as though he is really going through the mill. Whilst I can't offer specific advise regarding the BK Virus we do have nurses that are on the forum that can help with your question regarding if the virus is causing any of the symptoms you mention.

    I, myself didn't experience the virus but I did have the sweats when I had a normal body temperature and it is something I have heard other patients experienced. The cause is unknown I believe but it does subbside over time.

    The sickness and diahorrea, if it is not directly related to the BK Virus, could be delayed treatment side effects or GVHD.

    I had bowel GVHD which lasted a few weeks post SCT but I want to reassure you if it is GVHD with the right management it can be controlled and resolved early on.

    I hope you are able to get the information you need and your Son's symptoms settle.

    All the best,

    Michelle
    Online Community Champion

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  • Hayley_Anthony Nolan Hayley_Anthony Nolan

    Hello Katie,

    Thank you for your post, I am the lead nurse in patient services.

    I am sorry that your son has BK virus, this is one of the more common viruses experienced after transplant and as your son is experiencing can be painful and uncomfortable. Its good that it is subsiding and is normal for his urine to be dark/orange or even a mild red for a while, if it becomes more red or more painful he must let his team know. It can take some time for all the symptoms to completely resolve but there is no reason that they shouldn't over time.

    Vomiting and diarrhea are not directly related but the treatment for BK virus can sometimes cause these symptoms. He is also very early post transplant so its normal to have these symptoms as side effects from the chemotherapy and radiotherapy. There is always the potential for it to be gut GVHD as Michelle as mentioned, but it is quite early and I imagine he is still on high doses of immunosuppression which makes it a bit more unlikely. However his medical team will be monitoring for GvHD all the time and will let you know if they are concerned.

    I am sorry that he is having such a tough time, it must be distressing for you both. As horrible as it is everything he is experiencing is normal but over time it should all improve.

    If you have any other questions please do not hesitate to post on here or give us a call.

    Best wishes
    Hayley

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