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.

Friday, October 28, 2011

I Would Be A Bad Billionaire

I drive my wife in to work every morning.  It's a rather nice ritual; we get to spend some time together, we listen to the radio and chat.  It's one of those things you might think would be a pain, but instead it's one of those little joys that make life bearable. 

Every morning for the past month, I pass a hospital on the way - and every day, parked outside of it along a corridor where many visitors park, I've seen an SUV with writing in the back of it's window.  It proclaims a mother's love for her son's High School Football team.   And every morning, I see it - sometimes on one side of the road, other days it's moved to the other.  But it's been there every day I go by.  And I wonder who she's in there to see, everyday.  I wonder what kind of tragedy has befallen someone she loves, and I think of her travelling to the hospital everyday to see them, early in the morning.  (The team referenced on her car is from quite a ways from Syracuse.)  I think about what she's going through - and I think of the lengths we can go for the ones we love.  How your own well being can be set aside, to be there - to provide support, comfort.... anything.  I don't really know why she's there, but if it's for someone who is badly hurt (as I think it is in my own little head), and my heart bleeds for her.  I wish there was more I could do.

I stopped at the grocery store after dropping my wife off; I was picking up a few things when nature called, so I excused myself to the bathroom.  When I went in, I saw that there was a homeless man in the stall, washing himself up - bags and bags of "stuff" that he was carrying around just laying around.  He looked rough; it was a cold, cold night in Syracuse last night, and I think he was cleaning up and getting warm.  I wished right then I was wealthy enough just to hand him a bunch of bills and simply say "Stay Warm."  I wouldn't care what he did with the money.  There's some out there who'd use it for some not so savory things, but I don't even care.  Whatever misfortune befell this man.... he was out there, living a rougher life than I.  I remembered to be thankful for my warm home, my loving family, my amazing friends, and my incredible wife.

I'd be a bad Billionaire, because I do have a bleeding heart, and I'd be throwing out my money to strangers like it was my job.  I know that's not the right thing to do, but I'd probably end up doing it anyway.  I don't know how some people can be so selfish - I'm not saying give money to bums, but I know people who are selfish towards their friends and family! 

I guess almost dying this year, and getting my miracle gift really made me think about all the things I love about life - the things I'd miss if I were dead.  I don't think dying with a bunch of cash to my name, and a long list of people who hated me would be the way to go.  I'm not monetarily wealthy, but what I do have.... I'm lucky for it.  I can't fault people for their greed, but I do feel sorry for them.  I just wonder if it will be worth it to them when it all ends - and it will all end for all of us someday.  Can you clutch your bank statement when you die, or can you hold the hands of the ones you love?


Saturday, October 8, 2011

The Guilt

Having had my new kidney for about two months now, I've really come to love and appreciate the simple ability to urinate again.  When you've been on dialysis for a long time, you forget what it's like.  Seriously.  It seems like such a basic (and slightly disgusting) part of life, but when the ability is gone..... you forget.

It's amazing.  Really.  And I feel great everytime I do it.

Yet, there is a sense of guilt in me - for my former comrades in dialysis.  The ones still stuck in the chair.  Still stuck with the needles.  Still stuck with the PD cath's. 

I wish you could all feel what I'm feeling. 

Kidney disease - dialysis - is horrible.  It's absolutely, soul drainingly awful.  You're just.... lingering.  Waiting... either for a miracle or for the final curtain.  Seriously.  Sounds morbid, but that's it.  And the shame of it is that most people really do not understand how diabilitating the disease is.  A lot of people think you just "go do dialysis" and you're all better.  It's just a machine keeping you hobbling along until the next treatment.  It never ends.  People languish for years - becoming former shadows of themselves.  And it's not just adults - there are CHILDREN on dialysis.  That thought breaks my heart.

So, yeah, I feel some guilt that I was given the luck of the draw, and I have a chance at a better life.  A transplant isn't a cure; as I've said.  It's just another form of treatment - a much, much better one.  But it's not a cure.

We need to support the sciences that will unlock keys to not only reverse nephrotic damage and heal the nephrons in the kidneys, but also sciences that would allow doctors and scientists to regrow kidneys for people.  Someday, probably long after I've sailed off this planet, they will be able to simply solve these problems.  But the work has to be done.  There's too many people suffering.

I don't know just what to do yet.  But I'll found out.  I will find out how I, and others, can support the promotion of kidney research.  I will find out how we can support the patients who are on now, and maybe ease their burden some.  I want to live my new life to the fullest for myself and my family - but I also feel that I need to give back, and help others find some peace.  Otherwise, I'd feel unworthy of the gift I've been given.


Friday, October 7, 2011

Sometimes I feel....


Sometimes I feel like my kidney failure robbed me of 10 years of my youth.

And, you know what - that pisses me off.

I feel like I've languished for 10 years..... 10 years.  10 years of the prime of my life..... I spent only being able to give life a middling effort because I was simply struggling to exist.

Then again, sometimes I look at that time and I think "Damn.  I did a lot with 10 middling years.  I did more than some people will ever do."

And that's true.  I did a lot of things, and I lived life the best I could.

But I can't help but feel robbed a little - and now? Now, I feel like I'm dumped out on my ass - thrown back into a real world that I haven't really been a part of for a decade.  I have to pick myself up by my boot straps, lick a few wounds, and start it-the-hell all over again. 

Getting the transplant was a gift; the miracle will be putting my ass back into this world, and doing something of value with myself.  I have to be honest, I'm not quite sure what the hell I am going to do with myself - I'm in my mid-thirties now, and I feel like I have no direction.  Where am I going to go?  I sure as hell don't have the naivety and uber-strength of youth to throw myself into some crazy, ladder climbing career and try to build myself from the ground up.   I've got a family to support now, so I'm not going to go chasing the dragon of some kind of artistic career.  I'm going back to school in the spring to finish up the degree I left behind almost 10 years ago, but what the hell am I going to do with a bachelor's degree? 

Yeah.  I'm human, I'm a bit uncertain, and I'm certainly a little scared.  I guess I'm just more mad.  You know, I get this new kidney, and I start to regain my health - but now I'm like "well, self, what do we do NOW?"  I guess on dialysis, you're just so worried about staying alive, you don't think about the after.  Well, maybe others did - maybe they had some kind of stable life before they got sick.  I didn't.  I got sick right when I was just starting to figure things out in my twenties.  Now, I'm on the other-side and feeling as whiny as some emo assbot in college. 

This is silly.  I'm sure everyone, even those I think have it together, have these "what the hell am I doing???" moments. 

Guess I just needed to vent - to write it down.  Sometimes, for me, putting the "words to the paper" helps it become real, so then I can just move beyond all that.  I know I'll find something.  I'll find me.  And I'll do right for my family.  But, everyone doubts and wonders sometimes.  Thanks for listening to me vent.


Wednesday, October 5, 2011

Recovery and The Big Move

My Wife and I moved into a new place last weekend.  It's larger than our last place, but most of all - it's a home away from where I did dialysis for four years.  I don't know - I had a lot of emotions during the move. 

I spent many a day lying in my bed, feeling like crap, yearning to be free of dialysis - and when things got their bleakest, I seriously thought that I was going to die in that house.  I thought that it would be my last place of residence. 

And with the move, suddenly, the world changed again.  I could move - I could pick up the pieces of my life (and all the furniture and nick-knacks!) and start again.  To be able to do that.... well, it was overwhelming.  You resign yourself to a certain kind of life when you're chronically ill, and to have all that change in a matter of months.... well, life throws you curve balls all the time.  I guess, for me, I'm still amazed when I keep swinging.  Especially because I tend to be hit by pitches all the time!

The move was nerve wracking for me - especially since I couldn't really carry anything heavy, or really do much.  I'd get tired and winded pretty easy.  I'm woefully out of shape - spending four years in a dialysis chair can bring you down.  And let's be honest, I've never been the peak specimen of physical fitness.  But I'm looking forward to slowly rocking me into that position.  I hope to be better physically fit in a years time.  Not too lofty a goal. 

But my new place is becoming a home; Jordan's so good at making our house a home.  She did it for us at our last home.  She made it cozy, warm, safe and inviting.  She's doing it all over again here, and with such gusto! 

Our new start, and my recovery continues.  Having a transplant is a miracle.  I feel so different.... can't wait to see how the next few months pans out for me.  Baby steps - I wanna go conquering the world, and lifting logs over my head, but I'm still a bit banged up.... heh.  Someday, though.  Someday.

To all my friends still on dialysis - hold on.  I know how hard it is.  I just want to be able to reach out, and heal you.... or give you some of the relief I have now.  I hope it comes for you.  I know you're often maligned and misunderstood by friends and family - even doctors and health care staff overlook ESRD patients from time to time.  Time will come when more people understand our disease, and the dire straits it puts people into.  I know it's hard.   But I wish you the best that I can.  Hopefully, in the future, I can do something to help all of us in our struggle.  I feel it's my duty.

So, here's to new starts, hope, and perseverance.  Sometimes, it's all we have.