jellybabyjan replied to the topic Fit due to low blood pressure in the forum AL amyloidosis 9 years, 6 months ago
Hi Eve
Thank you for your wise words. Mike is doing very well since I last wrote. He has very few low BP incidents now and the wheelchair is redundant. We feel like a miracle has happened! We know it is probably down to ‘no chemo’ and he will have to go on another one soon, but we are enjoying the moment. We are making the most of each day and…[Read more]
jellybabyjan replied to the topic Fit due to low blood pressure in the forum AL amyloidosis 9 years, 7 months ago
Hi Karen
Things have got worse since Sun. We’ve now been told by his consultant that this could happen any time and we might not be ‘so lucky’. Prepare for the worse, hope for the best. They have contacted our local hospice. His BP tablets have been doubled and we now have a wheelchair. So far so good. We are shadowing his every move and ‘hoping…[Read more]
jellybabyjan started the topic Fit due to low blood pressure in the forum AL amyloidosis 9 years, 7 months ago
Hi
We had a nasty shock on Sun night when my husband Mike had a fit due to low BP. He stopped breathing and I had to give him CPR for about 4mins until the paramedics arrived. Thankfully I got him breathing again but it has scared us shitless! (sorry). Thery’re seems to be no quick fix as Amyloid has damaged his nervous system. Every time he g…[Read more]
jellybabyjan posted an update 9 years, 7 months ago
Hi
We had a nasty shock on Sun night when my husband Mike had a fit due to low BP. He stopped breathing and I had to give him CPR for about 4mins until the paramedics arrived. Thankfully I got him breathing again but it has scared us shitless! (sorry). Thery’re seems to be no quick fix as Amyloid has damaged his nervous system. Every time he goes…[Read more]
jellybabyjan replied to the topic Stem Cell Transplant in the forum AL amyloidosis 9 years, 11 months ago
Will do. Thanks.
Jan
jellybabyjan started the topic Stem Cell Transplant in the forum AL amyloidosis 9 years, 11 months ago
Hi
My husband Mike has been in remission since Jan but his Amyloidosdis has come back bad. They are talking of a SCT if his heart is fit enough. He has stage 3 Cardiac Amyloidosis and is on Peritoneal Diaylsis. They have told us it’s a very serious and risky operation but is his best chance of a long remission. The other option is chemo for 18+…[Read more]