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Last weekend I ended up in the emergency room. Saturday I started to get a headache but it wasn’t out of the ordinary, I have a history of migraines as a side effect of Tacrolimus (one of my anti-rejection medications). Headaches are one of the most common side-effects and according to one neurologist I spoke with could be in the 60% range if people who take the drug. Since 2017 I have been receiving Botox for this reason and have been maintaining the headaches well.

When I woke up Sunday morning, the headache had intensified, but still wasn’t the worst headaches I have felt. But shortly after waking up, I got nauseous and vomited. I felt better, and felt like drinking some water and taking a nap may help. If things didn’t improve I would start the process of seeking what I needed to do. After another couple of hours, I woke up and thought I was doing better, so I started getting dressed for the day and got sick enough and fast enough that I couldn’t make it to the toilet fast enough. So I went to the ER in Jacksonville, the closest hospital that has a solid record and a lot of my other doctors are associated with. They treated me for the headache but also found my chest film to look slightly cloudy. They took a CT of my sinuses and chest and said I had pneumonia on top of everything. At this point, I was in a ton of pain, despite numerous drug attempts to stop the nausea, vomiting and headache. They admitted me, to start treatment on the pneumonia and to try to control the other symptoms.

I must say that from that point on until the middle to later part of the week was a blur, of mostly sleeping day and night. While I was in Jacksonville, a lumbar puncture was performed to determine if meningitis was the cause of my problems. The tap came up immediately with very high pressures, which the PA told me was enough to cause a severe headache on its own. But the meningitis test came back negative.

Monday evening it was decided that with my complex case, they would need me to be transferred to Orlando, to be at the hospital where my transplant team could oversee my care easier.

When I got to Orlando, they redid most tests to get a second look at everything and determined that I did not actually have pneumonia. An MRI on my brain came up with results that pointed to PRES, a condition that shows up with areas of swelling. Most people on the team agreed with this finding, however one Neuro Radiologist said, it looked as though it looked more like damage caused from a stroke.

Ultimately by Thursday, my conditions seemed to be improving to the point where medicines were controlling my headaches. The team had decided they would run another test or two and if things were along the same trajectory on Friday Morning, it would be likely that they would release me. And on Friday morning, things were looking better, so they began the discharge process. As they finishing up on the discharge paperwork, and Ashley was already on her way to pick me up. Another headache started, but I figured that it would go away after some of the last medicine was given. That didn’t happen and the ride from Orlando to home, was not as pleasant as it seemed it would be from the looks of it on Friday morning. Luckily, that was the worst of it and things have been improving everyday since.

As I write this, I am back in Orlando, but this time it’s for the last scheduled cycle of Photopheresis. They will do some tests in the next 2 to 3 weeks and determine the success of the treatments. I look forward to getting the Hickman Catheter removed, by doing so my infection risk will be reduced, I won’t have to go through the process of sealing it to bathe, and can get back into water again!