autoimmune, Behçet's, Behcet's Disease, chemotherapy, chronic illness, Health, port, vasculitis

Coping with pre-op fears

I’ve known for the last month or so that a port was going to be necessary for me to continue infusion therapy, and stay alive. The veins in my arms are shot after a year of getting pumped full of Infliximab every four weeks. Discontinuing infusions isn’t a option if I want to keep walking, and try to ease the symptoms of Behçet’s Disease on my body. The symptoms are quite severe for me, and seem to be worsening quicker than any of us suspected.

I’ve been on a liquid/soft food diet for over a month because of the swelling, and ulcers at the roof of my mouth. A 50 mg taper of prednisone, and a round of antibiotics has barely had any effect, and I’m on the max dose of Infliximab (10mg/kg body weight) already. Some of the veins in my arms have collapsed, others are too heavily scarred to be of use. So a port it is…

I’m not happy about it, although I’ve been told this will make things easier, and less painful for me in the long run. I have been distracting myself every way possible, and temporarily put on medication to keep me calm while I wait, since I was in utter panic mode. I’m a complete needle phobe, but I’m able to use meditative breathing to make it through IV insertion. A port however, is too much for me to breathe through with active PTSD. So after I breathe through getting an IV at 7:30 tomorrow morning, I’m going to be put under sedation for port placement.

Maybe I’m a fraidy cat, but me-ow, so my choice, and I’m not going to feel bad about it. Behçet’s symptoms are exacerbated by stress, so it’s better for me to ask to be put under, if it is at all a choice. 

Now, I just have to make it till the morning. 

19 hours, 44 minutes, and counting…