So.... lung function has dropped more, FEV1% was 69% yesterday. My stupid immune system is scratching where ot doesn't itch ... bastard. So my Dr said our next step is photopheresis. Basically they treat your blood with UV light to put the T-cells back in their place before the blood returns to your body. It's "safe", so no real side effects and I've heard positive feedback about it on the lung transplant group I belong to on facebook.
The treatment is done at a Pretoria (city next to Joburg) hospital and I'm meeting the Dr who does it tomorow morning. Hoping the meeting goes well and that the plans can be set into motion. Will probably have to get some sort of catheter or port and this shouldn't affect my participation at the World Transplant Games but I will know more tomorrow.