Hi, my father in law has Essential thrombocytheamia diagnosed a few months ago. After a lot of confusing appointments he was put on hydroxycarbamide.
He is 81, diabetic and has trouble with his feet through diabetes. I feel they have really messed him around and had him going to appointments at several places and not being clear where he has to go. My husband has taken over, along with a neighbour and have been going to appointments with him as he is very confused and cannot retain information.
He gets very tired and very confused and has now got high blood pressure too. His confusion was worrying as it has made him like a different person, almost like he has dementia, but doctors say this is not a side effect. he cannot understand anything and finds it difficult even to speak sometimes and not like himself at all.
When my mum was ill she had a district nurse come to the house to save her having to go for tests all the time, but she was housebound. We find it hard that they expect him to go all over the place for these appointments and my husband has to take time off work for it. He is ringing up every day, forgetting things and getting distressed, is this normal do you think? Should there be a better way to contact the medical team without having to be on hold, go through options etc? We are struggling keeping track of everything as he is having eye appointments too and he has to go back to show blood pressure results to get tablets for that too. Some house visits or phone appointments would be more helpful right now.