Waldenström's macroglobulinemia
Discussion
Any hematologists on the forum? Long post sorry but I need advice and i'm not think straight most of the time.
My 78 year old father was diagnosed just before christmas. He had been in hospital previously for two weeks with pulmonary hypertension, edema, anemia, low sodium and a nasty chest infection.
Two weeks from being discharged and two days before christmas we seen the hematologist who gave use the news of WM.
So they gave him blood right away and began treating his edema with a view to start him on Rituximab, however my dad developed delirium. He was very confused and aggressive. They pumped him with Temazepam and haloperidol to try and calm him. Then he developed a bleed on the brain. It was just awful.
They then refused to treat him as they said he had developed dementia he would not co-operate and was too aggressive. They sent him to the dementia ward in another hospital and told us we should admit him to an EMI nursing home. They just couldn't handle my dads delirium.
Two weeks in the dementia ward they kicked him out as he didn't have dementia. He was given more blood and treatment in the medical ward and the consultant there pressed for hemotalogy to review his case (after much family intervention).
The consultant of the medical ward even requested my dad be given the treatment in his ward rather than hematology in the other hospital as my dad was fine in the medical ward (no aggression or confusion). Hematology have asked to see my dad again and my dad has an appointment next week with hematology.
My dad has been home now for 10 days. He is mentally alert and has made a great improvement and although he is certainly depressed and anxious there is no confusion or aggression.
The family is concerned though that Hematology will not offer the Rituximab treatment due to his last hospital "Psychosis".
We have had no prognosis just a Macmillan leaflet on NHL handed to us.
The entire situation has been just awful for my Father, the family and the medical team on the Hematology ward who did get it tough with my dad.
Any pointers or advice on how to deal with this? I don't want them writing my Father off.
My 78 year old father was diagnosed just before christmas. He had been in hospital previously for two weeks with pulmonary hypertension, edema, anemia, low sodium and a nasty chest infection.
Two weeks from being discharged and two days before christmas we seen the hematologist who gave use the news of WM.
So they gave him blood right away and began treating his edema with a view to start him on Rituximab, however my dad developed delirium. He was very confused and aggressive. They pumped him with Temazepam and haloperidol to try and calm him. Then he developed a bleed on the brain. It was just awful.
They then refused to treat him as they said he had developed dementia he would not co-operate and was too aggressive. They sent him to the dementia ward in another hospital and told us we should admit him to an EMI nursing home. They just couldn't handle my dads delirium.
Two weeks in the dementia ward they kicked him out as he didn't have dementia. He was given more blood and treatment in the medical ward and the consultant there pressed for hemotalogy to review his case (after much family intervention).
The consultant of the medical ward even requested my dad be given the treatment in his ward rather than hematology in the other hospital as my dad was fine in the medical ward (no aggression or confusion). Hematology have asked to see my dad again and my dad has an appointment next week with hematology.
My dad has been home now for 10 days. He is mentally alert and has made a great improvement and although he is certainly depressed and anxious there is no confusion or aggression.
The family is concerned though that Hematology will not offer the Rituximab treatment due to his last hospital "Psychosis".
We have had no prognosis just a Macmillan leaflet on NHL handed to us.
The entire situation has been just awful for my Father, the family and the medical team on the Hematology ward who did get it tough with my dad.
Any pointers or advice on how to deal with this? I don't want them writing my Father off.
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