Well, I start each year hoping that my husband will suffer less attacks than the previous, and that we can have a calmer life. Unfortunately, 2015 is already not shaping out that way.
My husband has already been admitted with attacks 4 times. In January, he had his monthly IVIG. He had an episode a couple of days later and received more IVIG. Within 24 hours of being discharged...he had another episode and received more IVIG. Within 24 hours...he had a third episode.
As he had received three full doses of IVIG that month, we decided to forgo more IVIG and just monitored him in hospital until his hemoglobin levels stabilized. He lived episode free for a few weeks, and was admitted to hospital with another episode last Thursday. He might be discharged later today.
With the exception of this latest episode, all episodes he's experienced in the past year (maybe longer) have occurred right after an IVIG transfusion. It doesn't happen with every transfusion, but it happens enough that they suspect his body has developed an antibody to IVIG.
So, when he receives IVIG to shut down the immune response, this antibody starts it back up. Like this wasn't difficult enough to deal with. :(
In addition to not being able to tolerate IVIG, he also can't tolerate Theophylline. We just can't get it up to therapeutic levels without him experiencing some serious side effects.
So....things are not going well in our world right now. We do our best to keep on top of it, but we are seeing an increase in episodes year over year, and there seems to be nothing that can stop it.