It’s hard to rest when you’re in the hospital. Not just for patients; but for families, doctors, residents, nurses, and really any staff member (especially Phlebotomists–those guys are like vampires and will wake you up at 4AM to take your blood). Of course I slept a lot, but my mind was starting to wake up. I started to say things like “I’m only 26, I’m supposed to get married and have kids.” I just remember constantly comparing where I was in my life to others and worrying that my time was up. There’s no timeline–things happen when they’re supposed to. I’m not a believer in “everything happens for a reason,” but I do believe timing is everything.
When I got to Chapel Hill, they scheduled 3-4 surgeries a week. My first scheduled OR trip was the day after I got there–December 2nd at 7AM, after my midnight CT scan. I never really got used to waking up from anesthesia. I was nauseous every time I got back to my room from surgery. I felt like I was withering away more and more each day since I could barely keep anything down.
The reason I was going to the OR so much was because of the wound. I needed debridements and wound vac changes each time I went in to try to get things moving and healing. It was never going to heal on its own, so they had to come up with a plan. The surgeons at UNC are incredible. Within a week of being there, they started to come up with a way to close the wound. They would eventually do a latissimus dorsi “flap surgery,” which involved taking the latissimus dorsi muscle from the right side of my back and using it to cover my open wound. We had to find a surgeon willing to try it because of how long it would take and how complicated it would be; especially because of my preexisting autoimmune disease, which causes inflammation of the blood vessels and arteries. Basically, there are always risks, but I had a lot of extra odds against me. That surgery wouldn’t be for a while and at this point, I didn’t even know they were talking about that.
My parents would join the morning huddle and my mom was able to chime in a lot. She’s a Clinical Educator in the OR, so she has seen and done a lot. My mom is the only reason I am able to chronologically write all of this down since she kept a personal journal throughout our time in the hospital. When she told the team I was starting to get really down, they asked if they could send a therapist in to talk to me.
The therapist was so sweet. She was around my age, and we just started to talk about my current situation. This was my first time ever speaking to a therapist, so I didn’t know how it would go. I just told her everything I was feeling; how I was scared, confused, sad, and terrified I would never be able to move on with my life. When your life flashes before your eyes multiple times, you panic about the things you haven’t been able to do yet.
I just remember the therapist starting to cry with me. That was a little confusing, but I gave her the benefit of the doubt because anyone who saw me (who wasn’t a doctor) got a little emotional at times. I remember one morning specifically–a doctor came in to check my tubes and monitors and I opened my eyes and asked him if I was going to die. I came to realize that doctors aren’t really allowed to answer questions like that. I met some doctors with great bedside manners, and not so great bedside manners. That particular doctor was not prepared for that question. At that point in time, it was still the first week I was a patient at UNC, so he truly did not have an answer for me; and even if he did, he couldn’t tell me. He just looked at me and told me he didn’t know which was not the answer I wanted to hear.
Dear Vasculitis 