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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Recovery from a viral infection

Now some 18 months after transplant I am just recovering from a viral infection picked up a few weeks ago.
The virus was identified as RSV a fairly common virus about at this time of year and one common with very young children, it's the one with the runny nose and hacking cough.
Young children do recover quickly but in my case having had a stem cell transplant from an unrelated donor it became more of an issue, it lingered on for weeks. I had seen my GP and been given antibiotics which did not help.
Luckily my local cancer clinic identified the virus and were able to offer treatment by way of a Ribavirin nebulizer given as an inpatient over seven days in isolation.
This was done recently and it appears to have worked but I am still trying to get back to previous energy levels and sleep patterns. I am assured things will improve but that the effects are always likely to be worse having had a transplant. I am told things will improve as the immune system gets stronger.
Has anybody else been affected in this way do you find it takes longer to recover from similar things.

Comments

  • Hi, I had RSV at 4 months post transplant and was kept in for the weeks nebuliser treatment, I slept a lot the first week home but was quickly over this and my recovery since has been better and better, I still get a bit breathless but I think this is just transplant related.
  • I'm actually an in patient at Kings College at time of writing (T + 470) having treatment for exactly the same thing, a combination of nebulizers and IV. Have to say the change in just over a week is remarkable, I could barely string six words together without dissolving into a coughing spasm when I arrived - agree with hanloumac that the breathlessness is transplant related, I think in my case due to the cocktail of meds stepping on Hb levels. Bizarre to think that a soppy little bug that hardly troubles an infant can knock us all sideways.
  • I had a virus – Influenza B (ie flu) – diagnosed in the days after my transplant, and now I'm on Day +78 and only recently seem to have shaken it off. They gave me Tamiflu at the time; then another course of it a couple of weeks later when it was clear it hadn't done much.

    I asked at the time how I was ever going to get rid of it, given that the Tamiflu didn't seem to be doing much and lymphocytes (which fight viral and fungal infections, if I've got it right) take a long time to build up after a transplant – they didn't really have an answer, and sure enough, it's been a long slog!

    I was given another Tamiflu-like medication later on, too, which again didn't seem to do much – so perhaps it was my new lymphocytes finally mustering the strength to kick the flu. Although it was annoying to be snotty and have to wear a mask when going into hospital for check-ups for so long, it could have been a lot worse, so I'm grateful that was pretty much the extent of the side-effects.
  • Diagnosed today with a virus, adenovirus.
    Had persistent cough for about 5 weeks, had been given 2 lots antibiotics early May with little effect, last weekend cough spasms got worse and high temp flu like shivers, called hotline and went to clinic Monday, blood levels all good, chest sound good, x-Ray ok. Throat and nasal swabs taken. Contacted Tuesday to say virus identified and to go back today with overnight bag!
    Checked out again, levels, sats okay. Bloods taken for additional culture test to check whether or nor virus affecting blood, won't know for a couple of days, continuing with antibiotics and not admitted.

    As said above its another common virus that most people can catch and soon get over especially children.
    I agree with above comments that we are more exposed to these viruses following transplant and it takes longer to recover. I'm reassured that these hiccups are taken seriously and dealt with.
  • Further check up Monday this week and told blood test for virus was borderline. Another blood sample taken for culture tests, before any anti viral treatment given.

    Informed today that the recent blood test was negative and the virus was not detected. So a good result, looks like the antibiotics may have done the job. Cough virtually gone and appear to be getting back to normal. No anti viral treatment required.

    Still have the support and reassurance of the Hotline if and when required.
  • That's great....glad to hear you're improving!
  • Hi everyone,

    Just to let you know, our next patient and family enewsletter contains an interview with our post-transplant nurse specialist about dealing with infections after transplant. I'll post it on here when it's up and you can sign up to receive the enewsletter here: http://bit.ly/ANpatientenewsletter

    Amy
  • Hi Amy

    That should be really helpful.

    Wish it had been out this week, I was hit literally on Tuesday afternoon with a fever and temp of 38.8. We got onto The Christie Hotline and was admitted without delay, dosed with antibiotics and many tests. Discharged yesterday with course of antibiotics and an appointment for next week to check progress.
    It's really important to deal quickly with any signs of infection.

    Peter
  • Hi Peter,
    We're so sorry to hear that you've had such a tough week. It sounds like you got to the hospital quickly and they were very helpful at the Christie. We're glad you're now back at home and hope you have a peaceful weekend.
    Amy
  • Sorry to hear about your fever and admission, Peter. I've got parainfluenza 3 now – symptom-wise it's mostly a heavy cough, but temperature and breathing have been fine, so doctors aren't too worried at the moment.

    The registrar did say that this flu would have been far more too dangerous to me than the influenza B had I had it back in March/April, which is a good reminder of how far I've come! I came off the ciclosporin just over a week ago, so hopefully my lymphocytes will start showing up to help knock out the flu...

    Hope your appointment this week goes/went well.
  • George

    Sorry to here you also under the weather. Saw a photo of you recently at the Family Day, you looked well.
    I had the para influenza3 in May, I was given antibiotics and an anti viral and it did ease off slowly, like you I was told it would run its course and docs not overly concerned.

    Think you will start to feel a lot better after the ciclosporin, I couldn't stand the smell of them.
    Pleased to say check up today was positive and antibiotics doing their job. No further appointment until next routine check up in December. Feeling much better too.

    Peter
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