Actually closer to six weeks of misery, scares and week long hospital stays. How to start? Better from today, a sunny cool summer day and Sue is doing much better. It all started with a high fever. Sue has been getting unusual infections, probably due to a form of immunotherapy that she got for about a year. Highly effective for many, it has a serious downside of compromising the immune system.
This time Sue went into the hospital and after a couple of days on IV antibiotics Sue was fever free. Then she was switched to oral antibiotics to go home. Also none of the tests came back with a conclusive source of infection.
Well it was after a couple days that Sue got a dangerously high fever. We sped to the hospital and they put her on very effective antibiotics to take care of almost anything she might have (and still with no idea of any specific infection). Again, Sue was fever free, but this time she would have to stay on the same antibiotics by IV and a new, powerful oral one. This involved getting an infusion every six hours for about an hour. Sue was wiped out by both the underlying issue and the heavy course of antibiotics.
Well, after almost a week, Sue started swelling up and feeling extremely weak. Panicked calls to the on call doctor over the course of a weekend, we finally packed to go straight to the emergency room. And not a moment too soon. Sue’s edema was dangerous and no one knew the cause. Well in the course of investigating it, there came a handful of suggestions, one of was a very dangerous condition. Very dangerous and with a dangerous cure. We braced for the final diagnostic by Sue getting a bone marrow biopsy.
Well, whew, the issue was probably due to the inflammatory response to the infection and the overall edema, due to the powerful oral antibiotic. So back home for rest and recuperation.
Till the following July 4th weekend. And Sue, although getting stronger, had a visual problem. Perhaps minor, we waited for the Tuesday checkup. Well in the doctor’s office, the possibility of a neurological cause. Oh, did I mention that Sue was off her highly effective targeted drug for just over a week due to the problems. The doctor sent her for a quick CAT scan to just check. Well, contemplating a possible relapse was just one thing too much for Sue to handle. Probably going into shock, Sue began to have more serious problems that might be caused by a stroke.
Moving very quickly, Sue was transferred to a hospital room for the fourth time in a month. Pretty out of it, Sue was given some children's chew-able aspirin. The neurologist came in and said that although it was probably not a stroke, the possibility of a relapse precluded the new stroke buster drug. Well, it was a few hours later that Sue was given a brain MRI...
No stroke, no relapse... but a condition called PRES, with the R standing for Reversible. Like the edema, PRES was probably caused by the strong oral antibiotic. Sue quickly mostly recovered and was doing much better. But then Sue got a mild fever...I think due to yet another new drug interacting with her targeted drug. So back on all the old drugs. And then on Sunday, yesterday, Sue was discharged yet again.
Of course, we are still worried, but are hopeful that rest and recovery will be all that is needed to get back to normal in a few weeks. I just was not up to updating the blog or most people due to the crazy nature of this rollercoaster ride with various ups and downs and misdirection.
And now for the sad, non-health related news. Sue’s monkey (stuffed get well monkey given by friends ten years ago when first in the hospital) got tossed in the hospital laundry. I am hoping monkey was given a new home (and finally cleaned). (see our photo album of monkey) Bye monkey!
And one day, Sue’s phone stopped taking a charge. So over to the store the next day to replace with another one.
And we missed the first play at the theater festival we had tickets for. Oh well. In the scheme of things, not a big deal.
Signing off after a long, long explanation of this past miserable month. Hoping everyone’s July is good and that ours is restful.
Much love,
Daniel