Thursday, October 6, 2011

it's not over until it's over

As I was walking to Iz's curriculum meeting, I remembered this exact night last year. It was another warm fall evening. My brother was having his dialysis port unblocked at an outpatient clinic halfway between my apartment and Iz's school. I had been on call to take him home after the procedure, but it went so late his wife was on her way to pick him up. And so, I stopped by to say hello and spend a little time, expecting to see him in the waiting room, getting ready to leave.


The receptionist escorted me back to an examining room, where Dave lay on a gurney, his bandaged arm dripping blood onto the floor. There wasn't a soul in sight. He was in moderate pain and dizzy, as he hadn't eaten all day. I ran out into the hall, yelling that someone needed to handle the leak that was growing larger by the second. A nurse came in. A technician. A doctor. As they tried to staunch the flow, the room got really hot. Next thing I remember I was on a chair, my head between my knees, with someone offering me apple juice. I knew I couldn't be the one to fall apart but on the inside I was starting to panic.

He was in pain. Not terrible pain, but I could see from his face things weren't good. Again, I went searching for someone to give him meds but they said he had refused any, that he just wanted to wait until he got home. Looking at him, I couldn't imagine that he could possibly be released the way he was.

I thought food might help. An empty stomach to a diabetic is not a good thing. Scouring Union Square, I finally found fresh pineapple and watermelon, two things he was still allowed to eat. Kidney failure limits your diet tremendously. He ate a bit—I tried to cut the fruit into manageable pieces with a plastic fork. And then, pain washed across his face.

He started to sob.

He could barely talk it was getting so bad. Again, I ran through the clinic, looking for someone to help, at this point yelling that someone just needed to do something for his pain. A doctor handed me a script and I left to drop it off at the drugstore, to be picked up as he headed home. I found his wife sitting in the lobby, wondering what was going on. The reception desk was empty. A woman wandered by, complaining they were short-staffed, and asked if I could bring her back to my brother's room. We wandered back through the hallway maze and as we approached his door, I could see far more people surrounding his bed than had been there before. As I walked in, the doctor said, "He's in too much pain. You can't come in." He then shut the door.

By now I was running late. I flew out of the clinic, ran to my brother's drugstore, made sure they knew getting these meds ASAP was a priority, and then I headed to middle school, barely able to breathe. The principal and my co-PTA president were by the front doors.

I was shaking.

I burst into tears.

As they fed me milky way bars, I tried to regain some sense of calm but it was almost impossible. The scene I had just left felt dire. I should have stayed but I needed to be where I was. I kept texting, hoping someone would answer.

Not long after my brother posted on facebook that he was in an ambulance. Then that he was in the emergency room. There were pictures of his bruised and swollen arm than didn't look real. I got a text from my sister in law that they thought he might have had a heart attack. That his body was shutting down.

I was desperate to do something to help, but there was absolutely nothing that could be done.

I went to sleep afraid I'd wake up to find he'd died during the night.

That was the true beginning of our transplant journey. That surgery didn't fix the port in his arm, nor did the 3 subsequent attempts. 6 weeks or so later, he asked me if I'd be tested to be a donor.

That was where we were a year ago right now.

4 months ago today, he got his new kidney, which has changed his life more than I think any of us could have imagined.

As I was walking to school tears stung my eyes at how far he, how far we'd come. I finally found a way to help. And he finally feels better.

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