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Can anyone help

Hi just wondered if anyone had any advice, my husband is post 99 days stem cell transplant from a 10/10 donor, was doing really well walking about 2 miles every day feeling well.
Last week got GVhd rash all over the body and legs this was treated with creams and steroids and rash has now gone.
On Thursday night he had a seizure I can’t begin to tell you how awful this was we called 999 and he is back in hospital they have found something on the left side of his brain and we are waiting for the results of the MRI scan
Has anyone else had this happen we are so scared

Best Answer

  • Hi Rusty

    I am the nurse specialist in the patient team, thank you for posting on the forum. This must be a very difficult time for you and your husband.

    Although your husband is 3 months post transplant and doing well, he is still early post transplant and will still have ups and downs. His immune system will still be recovering and so he will continue to be at risk of infections. Infections can affect any organ, including the brain and this could be the cause. The MRI will help decide on a diagnosis. Sometimes some of the medications can cause seizures, although if he has not started on anything new this is more unlikely. Although its not common to have seizures after a transplant I have seen this before and most of the time it is infection. The most important thing is that the infection is identified and the right treatment is given. This can take a bit longer to identify and treat than a more routine infection so you need to be aware of that.

    Its great that your husband is doing well otherwise and I am sure that once the cause is identified he will be back on track.

    By now you might have some answers so please keep us updated. If you have any questions you are welcome to contact me on 02072848229.

    Best wishes


  • Hi Rusty, that does sound very scary and I can imagine how worried you are.

    The GvHD rash is something I have experienced and it's good that it's gone through just steroids and creams. It took nearly two years of photophoresis treatment to get rid of mine.

    I haven't experienced seizures, though I went through a spell of fainting probably earlier in my recovery than your husband is now. I went for a checkup one time and whilst I was sat in a chair scale being weighed I just passed out and the next thing I knew I was laid on the corridor floor surrounded by doctors and nurses. As a result I was admitted to hospital for all sorts of checks, including ECG, MRI and chest X-Rays. In the end nothing showed up as unusual, though during chest X-Rays on two separate occasions I passed out. The first time the radiographer caught me and lowered me to the floor but the second time I dropped to the floor and banged my head really hard on the terrazzo floor of the X-ray room which wasn't good.

    I hope your husbands MRI doesn't show anything untoward and I'm sure his medical team will be doing everything they can to find out what caused his seizure. Fingers crossed it doesn't reoccur.

    Hayley or others in the Anthony Nolan team may have heard of this before so hopefully they may be able to help.

    Sending best wishes to you and your husband and I hope he can continue his recovery without any further complications.

    All the best,

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