Disneyland – Days 2 & 3

This particular visit to the Magic Kingdom left me feeling anything but having visited the happiest place on earth.

Day 1 was very uncomfortable as they pumped over 4 litres of the donor immunoglobin into my veins over the course of 5.5 hours. Sitting amongst the others in the medical daycare centre…. people getting dialysis, infusions, transfusions, everyone sitting for hour after hour in these hulking green recliners, a jiffy lube for people…

The first night I had a mild headache, and felt like I had a light flu, a little bit sore with aches and really really tired. I was uncomfortable but certainly tolerable and I thought perhaps I would get by as one of the few who had very minor symptoms. Stupid Me. Basically, the way I understand it, what’s happening is my immune system is being eliminated and replaced with the donor immunity – so your body starts working exceptionally hard trying to utilized the new antibodies – all the while asking where the hell the old familiar ones went… as it goes about sorting itself out, there is a violent storm within.

Day 2 – I went in and was given just over 6 litres over 6 hours and all during the transfusion I felt OK. You get flush and feel sort of weird with this concoction going in and you have to pee constantly. I finished just after 3Pm, went home and took a nap. Woke up with a headache much stronger then day 1. Throughout the evening it got stronger and stronger. By 8:30 last night, it was easily the most painful thing I had ever felt – by far. Just sitting there, my eyes wouldn’t stop tearing up from the pain, then I started getting chills with uncontrollable shakes, I couldn’t get warm. Then, taking a perfect 180, I would start sweating, soaking a tshirt in less than a minute. Back and forth, over and over, sweats, then chills. A fever of 102 set in and I started throwing up. My neck started to freeze up, I couldn’t move my head, it was like if you’ve ever slept funny and your neck is super sore, only worse – not that I wanted to move much because my head was in such profound pain that moving, looking, sitting, laying down were all equally excruciating. The pain made my legs weak and walking was difficult. I had been popping Tylenol like PEZ but it wasn’t making the slightest dent in either the pain or the fever. Then the A-Fib kicked in and now on top of everything else I was having trouble breathing, and all the medical goodies that come along with the arrhythmia.

I tried soldiering on but by 2am I couldn’t take it anymore so we went to Emergency. Even though it was so full – people were laying in the halls, I got admitted right away and was hooked up to yet another IV. More meds, painkillers, saline, etc etc followed – but mainly they were concerned that I had contracted the rare, but possible, side effect of IVIG, Aseptic Meningitis – swelling of the membranes of the brain… The ER Doctor said they were going to do a CT Scan on my head and a spinal tap to confirm or deny the diagnosis. This was concerning and really didn’t do too much for my already skyrocketing stress levels.

After 7 hours in the ER, and all the meds and fluids etc etc, my fever broke, the swelling went down and the pain finally began to recede. The on call neurologist decided the spinal tap wasn’t required and after my temperature went down they released me. My 3rd IVIG session was canceled by my Neurologist, with whom I’m to set up an appointment to discuss possible options. I need to monitor my fever, which has been steady at 100 – 101 most of today & this evening, I’ve been popping pills and draping my head and neck in ice packs… so far so good. If my fever goes higher or any of the other symptoms come back, I’m to get to emergency right away.

So that’s why no post last night…

I’ve got to see where we go from here.. I don’t know if 2 sessions rather than the full 3 of the IVIG will have any effect. So far I’ve been in far too much flux and discomfort to notice any difference but it can take up to a week to see improvement. Cardiologist is May 31st, Thoracic Surgeon was June 3rd but it’s been moved to June 9th due to some scheduling error on their part.

You’re up to date and I’m going to bed.

Have a Great Day