Day 17, Napping and drugs from fungi

Posted by Becky

Discharge from the hospital involves a lot of discussions and information transfer, so Leif was awake most of the morning and early afternoon. Right around the time he was cleared to leave, he was overcome with the need to nap, so we left the hospital about 5:30 yesterday afternoon. After a couple of pharmacy stops and a run by the store for orange juice to take his ciclosporin in, Leif was able to get home and eat some freshly home-made food, rather than the food made a day or two before that I bring him in the hospital. Other than eating, he's been taking full advantage of this opportunity for uninterrupted sleep.

When he got home, he got to see the gorgeous quilt made for him by Rhonda's craft group. It arrived a day or two before he was discharged, and since they discourage bringing your own bedding into the HSCU, I saved it as a welcome-home present. Not only is it beautiful, it's very Leify, with fern fronds and artichokes in the fabric patterns. 



Leif feeling the love while napping. Quilt made by Rhonda and her craft group, afghan made by my mom, futon from the Danish Literary Society.



His medication schedule is pretty intense these days. Since he's had issues with ciclosporin and nausea, he takes his 15 other pills about an hour earlier and lets them digest before taking the ciclosporin. Figuring out which pills weren't digested yet after he throws them all up is a game we don't like to play.

It is not surprising that ciclosporin (also spelled cyclosporin and cyclosporine) tastes awful. Under normal circumstances, people should not eat the stuff. It's made by a fungus, Beauveria nivea, and suppresses T-lymphocyte activity. The story of its discovery and development is interesting. Leif is on a large dose right now, and as time goes by he will decrease the amount he takes, which will allow his new T-lymphocytes to become more active as they get used to his body. The more active they are, the better they will fight infection, replace his "fired" bone marrow, and fight lymphoma cells; but if they get too active too soon, they will attack his body. At every clinic visit, the doctors will check Leif's ciclosporin blood levels and adjust his dose if necessary, to make sure his levels are in the proper range for the current phase of treatment.  

Leif's other immune suppressant drug is mycophenolate; it's also derived from a fungus, Penicillium brevicompactum. Mycophenolate suppresses both T-lymphocyte and B-lymphocyte activity.