There's been seemingly endless waiting along this journey that's now been almost four months since my brother first asked if I was serious about being tested.
There was the wait for our initial appointment, about a week and a half after I decided I was in. At that point the experience was nothing but unknowns: a strange doctor's office in a neighborhood out of my comfort zone. Dealing with how I'd travel (my subway phobia was still steadfast). Nothing but imagining and worrying and spinning stories about what might be. I'm giving this a 6 out of 10.
Our first wait in the lab that turned into coming back the next morning to give up 6 vials of blood for cross matching tests—while there, the wait to find a viable vein in my brother's arm. Giving blood for him isn't easy. That first hour plus, knowing we only had so much time before our meter expired: 8.
One of the hardest waits was the two plus weeks after that to find out whether or not I was a match. The best of intentions would mean nothing if I couldn't continue. My life was going to change dramatically or stay exactly the same. And while part of me was committed to saying goodbye to my kidney, another part of me was silently hoping I wouldn't have to go through all that was necessary for that to happen. This was happening towards the end of December and I was going on a cruise over the holidays. I wasn't sure which would be harder—going away without a clue or spending a week dealing with the concrete fallout. I'm thinking this could only be a 10. Or even 11.
After that was another 2.5 weeks for my first big morning. Nephrologist, transplant coordinator, donor advocate, social worker. 9 more vials of blood. First pee test. During the first 5 minutes they thought my blood pressure was too high to continue. Turns out the machine wasn't working properly. Wait to find out the results of the manual reading: 9.5 (my heart was pounding).
Sitting still during the 3 hour glucose tolerance test: 4. I got to talk to some lovely people. But, finding out and then waiting for an improptu psych evaluation when that was over? 7.5.
The weekend after failing my 3rd urine test, hearing that colon cancer could be the culprit and waiting until Monday to find out if in fact having my period could have thrown the test: 27. And that's still out of 10.
The wait to find out if I'd passed my psych eval or if they'd deem me too unstable to continue . . . to be honest, I'm still waiting for an official thumb's up on that one. But, I'm assuming all was ok since all continued from there. At the beginning, taking my anxiety attack in the social worker's office and history of an eating disorder: 8.5. After a few weeks of hearing nothing: 3.
Waiting for the results of my 4th and 5th urine tests: 2 (I was pretty sure I'd been fine all along, I just didn't know how to properly do the test).
Lying on the cat scan table, knowing the dye was about to hit, causing waves of intense heat to travel from the top of my head to mid-thigh: 8.5. Waiting for the sensation to subside once it started: 12.
Waiting to meet the surgeon: 9. For some reason this was one of the most terrifying parts of this for me. It made it real, concrete. This person would be slicing into me when I was unconscious on a table.
Waiting for my brother's test results that he's getting at the hematologist today: 5. At this point I'm numb. Anxiety's been muffled by fatigue. I think my mind's protecting itself from letting the swings get out of control. But, as the day moves along, I know that number's going to keep creeping up. And so, right now, I'm going to take a nap, to kill an hour or so. I'll go to yoga when I wake up, to keep my mind off things. And hopefully, post class, there will be good news to share.
And then waiting for surgery will begin.