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RSV

Is anyone else struggling with this? I am 16 months post transplant and have been super lucky with my health post discharge, but am floored by this, so fatigued, temp for 7 days, sleep interrupted etc, worse is my anxiety about relapse,as the last time I felt this I'll immediately preferred my diagnosis? Does anyone have any advice please??

Answers

  • Hi Trudi, I had RSV twice within the space of three months in my first year post transplant. The second time round was crippling. I didn't get a temperature but was just exhausted and had a persistent cough and cold like symptoms. I had returned to work at this point and I remember the kindly HR lady sending me home saying that she had never seen anyone look so ill! I was put on a course of ribivarin (I think) and had some IV gamma globulin but I don't remember the treatment bringing much benefit (I had naively imagined that it would be an instant cure). The exhaustion went after a couple of weeks of rest but the cough dragged on for 3-4 weeks afterwards. I was having regular blood tests at the time which were all normal but similar to you I had some black thoughts as a lingering cough was my main symptom prior to my initial leukaemia diagnosis. Try and get as much rest as you can, eat well, keep hydrated and try and stay positive - I am sure it will clear eventually.

    Regards,

    Rob.

    Dieseldrinker62
  • Hi Trudi,

    Thanks for posting, I am the lead nurse in patient services. I am sorry that you have RSV, it is an infection that can make you feel washed out for a period of time and is one of the more common respiratory infections we see post transplant. Even after 16 month as its the right time of year and although you have had a good recovery your immune system will still be vulnerable for a while. As Rob has said it can be treated but you will feel fatigued so all of your symptoms are normal and his advice for staying well is really important.

    Its understandable that you worry about relapse, I am sure everything is absolutely fine but it might be useful to discuss this with your transplant team so you can talk through blood results and how they monitor for relapse which hopefully will provide some reassurance.

    Look after yourself
    Hayley

    Dieseldrinker62
  • Thank you both for answering, I did end up admitted on IVABX and nebs and my immunity seems to have taken a massive hit, but I am home now and do feel much better although very fatigued. It's like going back 9 months!

  • Hope you are beginning to recover some energy. January is a very long month, especially when you are under the weather. Enjoy holing up when it's dark and wet, then try to get out in the sunshine (if we have some!) when you can. All the best.

  • Thank you, just beginning to feel normal again, now I'm worrying about Corona virus! X

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