Sunday, May 15, 2011

with thanks to a stranger

Without sounding too non-committal, it seems as if a transplant could possibly be in my near future. Last week my brother passed both the hurdles in his path and as of now, all should be good to go. 

Been here before and this time I'm not jumping on any bandwagons. In fact, we even have a date - I have my pre-testing days on someone's master schedule but none of them have made it onto my calendar yet. 

So far I've been  getting psyched for (and let down from) 3/21, 4/18, 5/9, and 5/23. I've blogged, tweeted, emailed. I've sobbed, panicked, been filled with excitement. This time I'm working at balance. Observing. Surrendering. Being ok with what is. And accepting that it's out of my control.

Being better about sitting in unknown has been one of the silver linings of this experience. Another has been finding some truly remarkably people I never would have known before. I need to give a grateful shout out to someone who found this blog the other day and shared part of her own experience as a donor. 

She got it. The grappling with uncertainty. The inability to let go when you need to be in charge. The responsibility you feel for someone else's well being and the fears that come along with things not working out the way you think they should. 

The drama. The hardship. The relief. The intensity and sometimes insanity of the journey. 

I wonder is she too felt judged. I've been told here, to stop whining, to suck it up. I've been accused of scaring off potential donors with my negativity. I've been called brave, spineless, heroic, selfish. All I can say is that no one who hasn't been in this place can know what it's like. And every single experience is different - for every donor, for every recipient. 

As this new potential transplant date is in the offing, I can see that I'm shutting down. I couldn't meet a friend for coffee yesterday. I had to decline another's birthday party last night. My dreams are getting more vivid, fueled with anxiety. This morning I was in a plunging elevator, desperately trying to maintain calm by deep breathing while the other people in the car chatted away, seeming to not notice. 

But, it's ok. 

I'm trying something new this time. I'm imagining what it'll be like to be on a gurney, being wheeled to surgery. What the pain will be like when I wake up. How bad my hair will look. What I'll feel comfortable wearing home from the hospital. 

And how I'll feel hearing that my kidney is now happily working hard in its new home. 


  1. I understand the excitement and anxiety of the wait. My brother and I will celebrate the 8th anniversary of our transplant on June 25th this year (and yes my kidney seems very happy in its new home).

    One thing that Stanford did for me when I was getting ready to donate was put me in touch with a person who had already gone through the process and could answer non-medical questions for me. That was great because I learned that I wouldn't get to shower for days (so I cut my mid-back length hair to a short bob), the night before the surgery they give you an incredibly nasty drink to clean out your colon, and they take an unbelievable number of vials of blood the day before surgery and your recipient just might be out of the hospital before you are. Oh, and they have these lidocane pumps they can put in the incision that really help with the pain. Anyway, if you want to talk, you can email me at bentjen (at) frontier (dot) com.

  2. Susan, thanks! All things I didn't know. I've been wondering about the hair . . . mine's already short but it turns into a Flock of Seagulls style after a couple of shower-free days. This is my first surgery so everything is new to me. I'll be in touch for more info.

  3. Hey it's Joan, I was not given a colon cleanse the night before I think I couldn't eat after midnight, only water. I'm pretty sure that's how ST. Lukes sticks to it these days. I ate light that day anyway. The drugs are wonderful going into surgery and coming out, thankfully I was a hapy drunk. I would love to answer any and all of your questions. Pre and post-surgery. June 30th I celebrate 3 years as a living donor. And honestly Elissa the worst of it may be your hair the day after :) I am here if you need me. Joan