Father's MDS
Posted: 02 Oct 2014 12:44
Hello all,
New poster here just after some advice about my dad..
He is 66 and was diagnosed with MDS in June this year - unfortunately, he wasnt told what type he had but was advised that he would need an immediate BMT which is due in November
He has been having having blood and platelet transfusions since diagnosis ( platelets every 3 days, 2 units of blood a fortnight) and has been relatively stable up until September.
His blood levels are not great, he is classed as neutropenic and has low platelets and his RBC levels are always low too.
In September he suffered a massive posterior nose bleed due to a bruise on the roof of his mouth and ended up in hospital for a week as they cauterized the bleed and his CRP levels were very high (395!) and as he is neutropenic, they pumped him full of every antibiotic going.
We got him home and he just hasn't been the same since - he has been weak, tired all the time, persistent cough and blood transfusions are no longer making a difference to how he feels (which they used to) we assumed it was because he had been through a lot etc... but now im not so sure - i think his MDS is progressing.
He is at hospital today having blood tests and platelets and he suddenly started having another nosebleed - he has also started having tightness in his chest and has his cough has gotten worse along with sweats and the shivers.
He is due in London to see Prof Judith Marsh on the 27th of this month as his Oxford consultant wanted her to confirm diagnosis - im worried he is too weak now to travel and this will all end up pushing his much needed transplant back.
He has seemed quite depressed and down in the dumps in recent weeks which is a mirror opposite of how he was before he had his nosebleed.The fight has seemed to go out of him and he seems visibly weaker and weaker...
I dont know the exact ins and outs of his consultant appointments and my mum goes with him and we get told second hand from them about what is happening - im getting so worried that we will lose him now...his counts are so bad.
Its horrible seeing someone you love so much getting so ill so quickly and there being nothing you can do to stop it.. In April this year he was fine, and now he looks like he is dying. Im due a baby early Jan and now im worried he wont be around to see it born....
Sorry for the essay, but im struggling to find anyone who understands as no-one seems to know about MDS - not even doctors it seems some of the time!
New poster here just after some advice about my dad..
He is 66 and was diagnosed with MDS in June this year - unfortunately, he wasnt told what type he had but was advised that he would need an immediate BMT which is due in November
He has been having having blood and platelet transfusions since diagnosis ( platelets every 3 days, 2 units of blood a fortnight) and has been relatively stable up until September.
His blood levels are not great, he is classed as neutropenic and has low platelets and his RBC levels are always low too.
In September he suffered a massive posterior nose bleed due to a bruise on the roof of his mouth and ended up in hospital for a week as they cauterized the bleed and his CRP levels were very high (395!) and as he is neutropenic, they pumped him full of every antibiotic going.
We got him home and he just hasn't been the same since - he has been weak, tired all the time, persistent cough and blood transfusions are no longer making a difference to how he feels (which they used to) we assumed it was because he had been through a lot etc... but now im not so sure - i think his MDS is progressing.
He is at hospital today having blood tests and platelets and he suddenly started having another nosebleed - he has also started having tightness in his chest and has his cough has gotten worse along with sweats and the shivers.
He is due in London to see Prof Judith Marsh on the 27th of this month as his Oxford consultant wanted her to confirm diagnosis - im worried he is too weak now to travel and this will all end up pushing his much needed transplant back.
He has seemed quite depressed and down in the dumps in recent weeks which is a mirror opposite of how he was before he had his nosebleed.The fight has seemed to go out of him and he seems visibly weaker and weaker...
I dont know the exact ins and outs of his consultant appointments and my mum goes with him and we get told second hand from them about what is happening - im getting so worried that we will lose him now...his counts are so bad.
Its horrible seeing someone you love so much getting so ill so quickly and there being nothing you can do to stop it.. In April this year he was fine, and now he looks like he is dying. Im due a baby early Jan and now im worried he wont be around to see it born....
Sorry for the essay, but im struggling to find anyone who understands as no-one seems to know about MDS - not even doctors it seems some of the time!