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.

3 Replies

  • 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 for me it would be a relief to have contact with someone like yourself

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