Myleofibrosis

My husband has myleofibrosis has had this since 2009 he requires three units of blood every two weeks and is on exjade for iron overload. His white count is around 1. I am finding it difficult to understand the difference of pv and others, also we would like to go on holiday but the haematologist says it will be ok but I am concerned. My husband also has Lung Fibrosis can anyone help.

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  • So sorry to hear of your plight. I have been diagnosed with PMF for 5 years, but it is being satisfactorily managed by ALPHA-INTERFERON injections every other day. I was on Exjade when receiving transfusions, but this has now corrected the ferratin levels.

    I consider myself lucky, but have friends - and you guys on this site - who suffer more than I do.

    I know nothing about lung fibrosis and the additional side effects.

    I hope you find some better advice from more knowledgeable people than myself. Good luck and every best wish. Tony.

  • Hello Ardpatrick. My hubby has Primary Myelofibrosis. This was diagnosed in May 2010. I am not sure that I understand what you mean by the 'difference of pv'. Hubby had transfusions every week for a year or so, and then in May 2012, had a stem cell transplant at the Royal Marsden. This has worked to a limited extent, but he has a lot of problems including lung infections. I know how it feels to be the partner of someone going through this - everyone on this site is a sufferer - God help them - but we have our problems too! In answer to your particular point, we haven't been abroad since the diagnosis as the insurance would cost more than the holiday. I am not sure how we can communicate directly, but if you would like to do so, then please say, and I will put my direct email address here for you. It is so hard being a partner of someone with this disease. C

  • Hi C my email address is ardpatrick@hotmail.co.uk for me it would be a relief to have contact with someone like yourself

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