What is the possible end of life scenario for sufferers of myelo fibrosis?

[shukar786]

My mother has myelo fibrosis. She was diagnosed 13 years ago. She has had regular blood transfusions for the past three years. She is getting weaker and is suffering from breathlessness & anxiety. Her tranfusions seem to be getting less effective. At some point she may prefer not to continue with transfusions which obviously would make her even weaker & increase her difficulty in breathing. Has anyone had family members go through this end of life scenario & how did they manage? We have recently established contact with our local hospice.

[harleydavidson]

Hi Shukar 786. My dad died of MF in March 2000, 7 years after diagnosis. He wanted to stay at home and so for the last 2 or 3 days we had a Marie Curie nurse help us take care of him. He had been in and out of hospital for the previous 9 months, with different complications but kept fighting back to health and was incredibly brave. The last 3 days of his life he was very out of it on morphine and his breathing was awful. Watching someone you love die is the worst thing in the world and my prayers are with you and your mother. You are welcome to contact me if I can be of help or support. Be strong, take care. Melanie x

[shukar786]

Hi Melanie,

Thanks for replying. Condolences to you & your family.

Assuming that your father had blood transfusions, did he continue with them to the end? Did they become ineffective? My mother has them every 10 days - 2 weeks. She has had some complications like a rapid heart rate which they brought down with medication for it to then go too low & now she's off those. She is getting more breathless & weaker & has become very anxious of being left alone. She has mentioned in her weaker moments of discontinuing with the transfusions. I suppose it is this scenario that troubles me the most. As you say it is extremely difficult watching someone you love die.

Thank you for your kind words

Saleem

[Aime]

Hi Guys, I am so sorry to hear of your troubles. I watched both my mum and dad die last year (not from MPDs I hasten to add) but I found I did my grieving and went through the worst time when they were struggling - at least once they had passed away, they weren't suffering any more - they were at peace and that brought comfort to me. Thinking of you, Aime x

[harleydavidson]

Hi Saleem

As far as I remember the transfusions ended about 1 month before he died and by then they were very frequent and less effective. I don't remember him being short of breath till the last couple of weeks but his liver was huge and his spleen had been removed 5 years before. Your mother's consultant will advise you and her, as to if and when there is no point to the transfusions, but some relief is better than none . Be led by what your mother and her consultant want. Be strong! Melanie x