My husband has multiple myeloma for 5 years and is now on maintenance treatment (revlimid and dex). From the start he has very poor kidney function, bordering on the threshold for dialysis. He is treated by haemotologists and urologists. The kidney specialists have been putting pressure on him for several years to have a fistula fitted so if he succumbs to an infection and needs dialysis it can be done easily. We resisted until last year then gave in. It was a huge mistake and I am writing to warn anyone in similar circumstances to think about it very carefully. Gavin is left handed so they decided to put the fistula in his right arm in case there were problems. His right arm is also the one that blood has been taken from over the years and the veins were not great. The first attempt didn’t work causing painful swelling and difficulties with day to day activities. In particular using a mouse and jobs around the house such as holding a paint brush, chopping vegetables etc caused swelling in the wrist. They tried to fix it with a ‘splint’ but that got blocked and caused more swelling in a different place. They can’t do anything else. This gives an extra layer of difficulty on top of neuropathy, digestive problems, leg cramps and other side effects of the drugs. When he does need dialysis they will be able to do it in another way and by that stage he is unlikely to mind. The haematologists are hopeful he will have quite a few more years but they will be more uncomfortable than they need have been and what he can do is more restricted. Gavin will ask the haematologists to talk tot he kidney people about not pressuring myeloma patients into having fistulas unnecessarily. I thought I’d take this chance to alert the wider myeloma world to be very cautious about going down this route.
