Hi Sheila! I have seen that happen once before.
What I understand, he is at a good hospital. Prayers!

Hi Dorothy. Yes we are Indeed lucky not to pay for these drugs.So far its been good to be able to return to R F anually. where they check the cardiac bloods and do an ecco so at least we can get a bit of an idea of any improvement or deterioration. It is a long trek to get there though. You mentioned another trial which you werent eligble for. He hasnt been offered any other trial yet. I think because of his other conditions he may not be eligble either.
Thanks . Take care to all. Sheila

Hi.Sheila.im in UK so&I'm with the Royal but I only get a phone call avery 12 months .the tablets Tafamadis take a while to kick in .I started on them in Aug.24 I was told it takes up to 12 months.we are very lucky we do not pay for them. My kidney s are almost gone so I may not get new triel.which get rid of any.what is already in the body . B Y the,
way I'm in Birmingham .
Best wishes Dorothyx

Hi Mary. I look at these threads often and find the site really helpful. Im not sure how it happened but we are actually in England UK, not Ukia . We live Cambridge and are under The NAC at Royal free hospital London where he is checked annually . He has just started Tafamadis last September. I'm not sure if its helping but he does have other conditions. We are hoping the Tafamadis will slow the heart damage. He has recurrent pleural effusions drained every 4 weeks but no other signs of fluid retention. He also has Chronic myeloid leukaemia which is currently stable despite treatment being stopped 12 months ago because he had a as stroke

Hi Sheila! Curious where your husband is being seen? I agree with MyAmyloidosis.
I see that you are in Ukiah, I know the area. Is he able to go to Stanford or UCSF?