My dad (65) was diagnosed with MF after 3 years of being told it was thrombocytopenia and on a watch and wait , his platelets have decreased and now at 10. He was put on steroids and nothing was working, thank god his consultant retired as the new one right away did bone marrow biopsy and confirmed it was not thrombocytopenia! He now has an enlarged spleen (23cm) and collapsed at home due to low blood pressure. His hb is a stable 99 and all other bloods are fine! He is currently in hospital having investigations as to why his bp is so low, they say they’ve not come across this before! He started on jakafi two weeks ago but has since had This stopped until they find the cause . Sad to see my dad deteriorating, seems like a tricky beast this MF
Hi @Linzmd and a great big welcome to our forum, I am so glad that you have found us.
You really show so clearly how tough it is to be a relative/carer. You go through so much emotionally, physically and practically with your dad but you are completely powerless to make things better.
I am not a medical person so I cannot comment on your dad medically but as you said it must be really sad for you to see your dad like he is at the moment.
What I have found though is that many of us share the same fears, thoughts, feelings and practicalities and that is why I find this forum so supportive.
However if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at firstname.lastname@example.org.
I look forward to hearing more about what is going for you.
Hi @Linzmd. That sounds like a very worrying time but I’m sure having you around is a great comfort. I’m glad you managed to get a better consultant and things are being investigated properly. Let us know how you get on.