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norma

my partner had a transplant for myelofibrosis nearly five years ago. His counts have always been on the low side except red cells and his spleen has stayed enlarged. The doctor seems to think his spleen is collecting the cells. At his last clinic visit he is severely anemic. The doctor seems to think this could be caused by an internal bleed so ct scan tomorrow. Neutrifils low so should we be taking precautions like when he first came home from hospital five years ago?

Answers

  • Hi Norma, welcome to the forum. I'm one of the community champions here and had a transplant myself just over 5 years ago, but in my case it was for Leukaemia.

    I'm afraid I can't comment on what might be happening with your partner or whether it may be a problem with his spleen, but hopefully one of the Anthony Nolan team might be able to help with some info.

    How did his CT scan go yesterday? Have you got the results yet?

    If his Neutrophils are low it does sound like you need to be cautious about infection to avoid making the situation worse.

    Please update us with news as this may be relevant to others now or in the future.

    I hope the medical team get to the bottom of this and he is able to get back to better blood levels soon. I imagine it's quite worrying for you both.

    Best wishes,

    Steve
  • Thanks Steve
    CT scan showed blood clot in splenic vein so spent yesterday at Leicester royal now on injections.
    But worse they have found suspicious area in small bowel so more tests.
  • HI Norma

    Thanks for posting, I am the specialist nurse in patient services. I am sorry that you and your husband are having a difficult time, it must be a worrying time for you both. At the moment I am sure you feel in limbo until you get the results and know what is happening. Its good that your husband has had 5 years in remission so if it is bad news he should have treatment options, so try and stay positive. I would be happy to discuss your concerns with you as sometimes its easier over the phone, my number is 0207 284 8229 or 07824139246.
    Otherwise please keep us updated.

    Best wishes
    Hayley
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