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Worried

Hi,
I’ve not been on for a while, my partner had ALL and received total body radiotherapy and matched related donor in aug 17. After he struggled terribly with gvhd and led to him being in hospital for months, he was discharged in nov.
Since then he’s been doing amazing, in remission and managed to stay away from the hospital until recently he’s felt really unwell.
The last few weeks he’s had a headache, cough and so tired. Took him to a&e Saturday as he spiked a temp and cultures confirmed a bug in his Hickman line. They don’t want to take the line cause it’s shown it will respond to antibiotics? Has anyone experienced this?
His oxygen sats have been fluctuatig and they have queried a viral infection with the cough, I just worry so much cause the symptoms are very similar to when he was first diagnosed & I know I shouldn’t think like that but it’s always at the back of my mind. He only had a pet scan less than a month ago & his bone marrow biopsy which showed no concerns!
Any advice will be welcome!
Thanks x

Comments

  • Kitty

    It's only natural to worry and we all understand that it doesn't matter how much you try and rationalise what's happening, it will always be at the back of your mind.

    I had my transplant for ALL towards the end of 2015 and have had a couple of occasions where I experienced symptoms very similar to those I had pre-diagnosis and got unnecessarily concerned, but ultimately it just turned out to be viral infections. The most recent was towards the end of last year, two years after transplant where my red and white blood counts both fell significantly for a couple of months with the obvious breathlessness and fatigue. In the end the doctors could only put it down to repeated viral infections.

    Wishing you both all the best. I hope he continues to respond to the antibiotics and can shake off the viruses soon.

    Tony
  • Hello Kitty

    I had a Hickman and a Picc line and was fortunate not to have any infections in them, however I knew a number of patients who did, it's not usual. I can imagine how concerning this is, the doctors have spotted the problem and all being well a good dose of anti-biotics will sort it out.

    Don't forget that your partners immune system is very young and if he is still on immunosuppressants, bugs etc will knock him about more than they would normally knock a healthy adult. Rest, good nutritious food, the anti-biotics along with some TLC will probably see him back to good health asap.

    Rachel
  • Thank you for both your advice!
    They’ve done more cultures as he spiked a temp again whilst on the antibiotics and they was due to finish! They’ve also found on swabs the flu virus, paraflu I think they said so started some anti virals! His platelets have dropped which they have said will be in response to the infection! They are meant to be starting line locks but not sure what’s going on now as they had a meeting yesterday about him with microbiology! I just hope it clears up quickly as he so fed up now, good thing is he’s been isolated in the hospital now as I was scared he would pick up other bugs! He was meant to come home today but spiked another temperature yesterday, so no idea what is going on really!
    Thanks
  • Hi Kitty,

    I'm sorry to hear of your partners problems and hope the medical teams are able to get on top of his infections and get him back on track soon. I think there's been a lot of nasty flu bugs around this year which can be very harsh on us when we are still fairly young in terms of transplant. I've had a chesty cough since before Christmas which turned into pneumonia for a short time but is still lingering even now, and I'm five years post transplant.

    I would have thought by now if he had his transplant in August, it shouldn't be a problem to have the Hickman line removed as I don't imagine it will be as necessary now, and if anything is likely to be a source of infection. Mine was taken out about 6 weeks after my transplant as there was an infection in the line, and it was not replaced.

    I think the infections he's had are most likely to have caused the drops in his counts rather than problems in his bone marrow, so hopefully once he has a good rest with antibiotics to beat the infections he will start to pick up. I know it will be hard for him to be in hospital, but until his infections stabilise it's probably the best place he can be.

    Sending best wishes to you both,

    Steve
  • Thanks for your advice, the line is now out but he’s had a few temps since of around 37.6 and headaches! He’s so low and fed up, and his bloods have all dropped slightly which worries him including his WBC and neutrophils which have been in range for so long.
    The plan is to put the line back in for ECP but that’s going to be discussed again in a few weeks. He still has a cough and is really tired! I’m hoping he will pick up over the weekend and get him home next week to help him feel better!
    This forum has really helped me!
  • Hi Kitty,

    I guess the cough and temperatures caused by the flu virus might be affecting his counts. Hopefully when those infections clear up his counts will recover.

    I was interested that they might put the line back in for ECP. I had ECP too to get rid of skin GvHD but my line had been taken out well before this started and I didn't have another fitted. I guess it depends on the frequency of the ECP cycles as to whether it's worth putting a line in.

    I have seen central lines being used for ECP with other patients, but for me a needle was used. The machines can use on or tow needles. In the case of a single needle the same line is used to withdraw blood and to replace it after cell collection, whereas a double needle uses the second needle to return the blood, so is marginally quicker. Generally the collection needle was inserted into a large vein in the inside of my elbow and the return needle (if one was used) into a cannula in my hand.

    If your partners veins have recovered it may be adequate to use needles rather than a new line?

    Regards,

    Steve
  • Thankfully his counts have come back up & he was doing well was planning on being home Monday, but has come out in a terrible rash which seems to have worsened! They aren’t sure what’s caused it, whether it’s gvhd, infection or a drug allergy as it looks very much as a allergy rash, raised and hot!
    His line is going back in as they’ve said at ECP his veins aren’t good enough so would have to stop the ECP treatment which his consultant doesn’t want!
    Nearly 4 weeks he’s been in hospital now, seems to be one thing after another! Just hoping he hurry’s up home!!
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