Me (in voiceover): So you’re probably wondering how I got here…
Here is, of course, in a hospital bed on the sixth floor of Ginsburg tower at Florida Hospital. I’ve been here for almost an entire week, but have yet to inform most of you because I didn’t really have any information to share. But now I do, so here we go!
It all started almost two weeks ago, when Joe and I were on vacation. I had been having a little cough since my last hospitalization in mid-April, but it started to get worse while I was in South Carolina. I was also getting short of breath after any sort of physical activity like climbing stairs or walking quickly. By Mother’s Day, I was also having chest and back pain. So last Monday, I went in for a Pulmonary Function Test as well as a chest X-Ray. Later that afternoon, my nurse coordinator informs me that I will be getting a bronchoscopy with biopsy Tuesday morning and will be admitted to the hospital after.
They started me on three antibiotics as well as an anti-fungal medication while they waited for cultures and the biopsy results to come back. By Friday evening, they had determined that my donor antibody count was high, which can lead to Antibody Mediated Rejection or AMR. I had AMR when my lungs were rejected two years ago, so getting that news obviously made me a little nervous. Luckily, they caught it early and the antibody count is not terribly high.
However, treatment for AMR will require treatment in the hospital for at least 16 days. Treatment involves a process called plasmapheresis, which is similar to kidney dialysis, except that it takes the bad plasma (with the antibodies) and replaces it with new plasma. This process takes about two hours, every other day. I will also be on a chemotherapy drug called Carfilzomib as well as an infusion of IV Immunoglobulin. They are continuing one of my antibiotics, Zosyn, and the anti-fungal medication Cresemba. So, in summary, I’ve got a lot going on.
Between the chemotherapy and the plasmapheresis, some days I will just want to sleep all day. The plasmapheresis can be very draining and may make me feel anxious, nauseous, and fatigued. Most days though, I should be feeling fine and probably bored out of my mind. If you want to come visit me, that’d be pretty cool, I guess. Just text me a couple hours ahead of time so I can let you know if its a good time. If you don’t want to visit, that’s cool too. If you want to just pop in and bring me food, that’d be awesome because hospital food blows. If you just want to text me, post on Facebook, or interrogate my family or friends to see how I’m doing, I’ll appreciate that as well. I’m going to try to keep everyone updated as best I can, but for the most part, things are going to be pretty boring for the next 15 days.
Thanks for reading! I know this blog wasn’t as nearly as fun as some of my others, but sometimes ya just have to be informative and technical and lame.
With Every Breath: My Life with Cystic Fibrosis 