The TRALI Problem

Hi, Friends of Lori; this is Greg. 

Lori has requested that I write a quick update. It will lack the usual scientific clarity of Lori's posts, but she wanted to make sure people were updated on what's going on.

On Friday (10/16) Lori started having trouble breathing. This is likely due to either the fungal infection being in her lungs or a condition called TRALI (a bad reaction to the granulocyte transfusion). They moved her to ICU Friday night so they could keep a closer eye on her. 

Unfortunately, they had to give her a COVID test to rule it out (even though no one actually thought she had COVID). This ended up giving her a bad nose bleed, which, given her low platelet count, took a very long time to get under control. Her first night in ICU was spent dealing with that, along with her breathing issues. (For the record, the COVID test was negative.)

She was being given oxygen with a mask and was doing ok with it when she was awake and sitting up, but when she would fall asleep, her breathing would get rapid and her pulse ox would drop under 90. Saturday during the day she felt ok.

Saturday night was a rough night. She didn't sleep well and got panicky. It was hard to keep her pulse ox above 90. Sunday morning she was pretty miserable: exhausted and hungry.  They switched her from a regular oxygen mask to a BiPAP machine, which is similar to those CPAP machines they use for sleep apnea, except the air pressure goes both ways, so it really helps you breathe better. (Apologies to people I was messaging Sunday morning for incorrectly saying they were using a CPAP machine.) They also gave her some meds to help her stay calm and relaxed

The BiPAP worked very well in helping her sleep. She was able to sleep through most of Sunday. And has also been able to eat and drink a little.

We had a serious discussion with her doctor this morning. The longer this goes on without showing improvement, the less likely it is to be reversible. If it doesn't start showing improvement in the next day or so, we will transition her to comfort care/hospice.

I will try to keep you all updated through this blog, since this is where most of you look for information on Lori's condition (we aren't going to set up a Caring Bridge site, as a few people have asked about, since this is already here).

Cara was able to come home from grad school and I am able to go on FMLA starting tomorrow, so we are all together and we are ok (thanks to the many of you who have asked if we needed anything).  If Lori is moved to hospice care, we will all be able to visit her at once, which will make Lori happy. In a perfect non-COVID world, she would want to be surrounded by all of her friends as well, but we will be limited to immediate family. Please know that she feels your love and sends it right back to you all.