The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Thursday, June 16, 2011

What will life bring?


These past few months have been kind of crazy.  It's amazing how life can seem to drag on and stand still for so long, then all of a sudden a few things happen and suddenly the world tumbles to life again.

This whole upcoming benefit for me is crazy - crazy good.  I'm so humbled, really, by the outpouring of support.  People have come out of the woodwork to lend their good wishes to me, and it's incredible... sometimes it can seem like this world is a horrible place.  Bad things happen to good people.... good things happen for bad people.... life marches on mercilously... we worry about so many things... but it amazes me how people really can be loving, caring and supportive in massive amounts.  Yeah, there may be some crappy things in this world - but there is good.  There are good people, and lucky for me - I seem to have befriended many of them.

I really can't find the words at times... I get all quiet and shy about it.  Then I worry that people would think I was stuck up about it all or taking it for granted.  But that's the furthest from the truth.... I'm so overwhelmed.  It makes me want to go out and do good things for people... it starts, however, by being good to the people around you.  You can't save the world if you can't help those closest to you.  Or just people who are in your life everyday.  I try to remember to treat those around me and in my life well.  I'm not always perfect, but I try to remember that you catch more flies with honey than vinegar.

So, yeah, the benefit.... amazing.  And, I hate to admit that I need help, but it'll help so much.  Bills pile up... getting back on my feet after getting a transplant is going to be an arduous task.  But I'm really aching to go back to work - to do anything.  Just get out there, do something and earn my keep.  You get really plowed under financially when you get diabilitatingly sick like having kidney failure.  I don't want to be extravagant, but I'd like to be able to do the American Dream thing - new car, house, etc... I'll get there.

Also, spending another week in the hospital just reminds me of how fragile I can be.  I'm really tough for some reason, but it can be just a little thing like an infection that puts me in a bed with an IV for a week.  I feel like I'm a pro at being a patient.

And getting the call?  I'm waiting for the next one with such hope.... Jordan's waiting with so much hope.  That girl gives me so much..... I couldn't do it without her.  It's so funny.  When we started dating, I was so scared of her leaving because she couldn't handle my illness.... and I understood that.  It's a lot to put on someone.  But she wore than mantle.... maybe better than I have.  She's never stopped believing in me and loving me.  Even when I'm at my most miserable, mean, spitting, yowling, needing dialysis bad, bleeding, puking, dizzy..... she's stood there, wiped me off - reminded me of how strong we are and she pushes me to keep the faith.  I believe in us more than I've believed in anything else in my life.  The girl is my best friend.  And I love her.  And that's the most incredible thing I've ever known.

So, we wait.... what kind of future will the transplant bring me?  Will I be the man I've always wanted to be?  Active?  Responsible?  Capable.... Happy?  Will it work well this time?  I don't even remember what it feels like to feel good..... I wonder if I'll bound around like a Tigger when I get this kidney.  Will I bounce off the walls?  Can you stop me?  Can I stop myself??  I don' know.... but I'm so damn excited to find out.  I need the change.

And, after the transplant, I'll still require a lot of immunosuppresant drugs to fight rejection.  I'll always be kidney boy for the rest of my life.... but, dammit, it's my life and I'm going to live it and live it well.


Saturday, June 11, 2011

Any Day Now

So, I didn't get the kidney last time.  But I got a call!

A glimmer of hope!  After four years!

I almost forgot what real hope feels like.  You glide along in this "maintenance" mode for years just to get by.... I mean, I've been on auto-pilot for years now..... but this.... I could get another call any day now, and the prospect of that is exciting.

I just wonder what life will be like post-transplant; will I have complications?  Will I get a reprieve, and live a "normal" life?  What will I do with myself?

The future is wide open - and full of possibilities.  Some of that is scary, no doubt, but I've got so many aspirations I can't be held down.

Soon.  I can feel it.


Thursday, June 2, 2011

Getting "The Call"

I was up early this morning - I got into the shower around 7 AM.  When I got out, my phone was ringing.  I saw the number on the caller ID - It was the Transplant Clinic.

Oh.  Man.

I answered, and Ellen - my coordinator - said "Your number's come up!  You're a backup for a kidney we've got, but we need a current blood sample to cross match!"

My heart hit the floor and then the roof....  I told her I'd be there in a few minutes, as I lived down the road, and I woke up my wife, who almost fell out of bed with excitement.  We got ready in a hurry, and raced down to the hospital.

We waited in the lobby of the clinic; there was a little girl in the waiting room, too.  She was probably about 8 or 9.... just a sweet little thing.  I heard the excitement in her and her moms voice - they were waiting for a kidney too.  That poor little girl had a bunch of surgeries, she said.... I know how much I'm suffering from this, but at least I had my childhood.... this poor girl.... my heart just bled for her.  I hope she gets a kidney too.

So they took my blood, and said they'd know if I didn't cross match in about 4-6 hours.  Ellen said she'd call me either way to let me know.  I'm still waiting right now, and though I was cool about it all day - it's consuming me now.

Waiting is crazy.  But the hope... the possibility..... my life could change...... I'm hoping.