Why Donate? A Guest Blog from Candi

This is the first guest blog from my friend Candi who I asked to make a case for why people should consider live kidney donation.


Candi's Story
I'm one of the lucky ones.  Yes, lucky - I have a good friend named Josh who is willing to be a living donor of one of his kidneys for me.  I've been on dialysis for well over 6 years now and although I've done very well on dialysis, I need a transplant.  Not only is being on dialysis inconvenient, but it also greatly increases my chance of getting heart disease and other joint and blood disorders.

Hi, my name is Candi and I have End Stage Renal Disease.  Without dialysis or a transplant, I would die.  Literally. There are two kinds of dialysis - hemodialysis (the one that most people are familiar with) and peritoneal dialysis.  I'm on the second kind of dialysis.  I have a catheter in my stomach and every night I hook up to a machine for 9 hours while the machine performs my dialysis for me.  It doesn't hurt, but after almost 7 years, I'm really tired of it.

I'm also tired of not being able to go swimming or to take a long leisurely bath.  I can take showers, but can't be in "standing" water - it can cause infection of the catheter entrance site.  It also takes me longer to hop in the shower, because I have to anchor my catheter and then clean it a special way after the shower.

Travel is another inconvenience.  When I go somewhere for just a couple of days, I not only have to pack a bag of necessities and a change of clothes, I have to pack my machine (the size of the largest suitcase you can fit in an overhead bin on a plane, with a weight of about 35 pounds), but I also have to take two bags of fluid (each 6000 ml which weigh 25 pounds total) for each night, plus drain bags, dialysis casettes, mini-caps, flexi-caps, masks, 2x2's, 4x4's, tape and about 12 prescriptions.  In other words, I arrive at the hotel looking like I'm either Paris Hilton or that I'm staying for 6 months!  In addition, I also usually have to rearrange the hotel room to accommodate the set-up required for my machine and bags of fluid.

Inconvenience aside, the biggest reason that I hope this all works out is that my risk of heart disease goes up with every year I'm on dialysis.  You see, most people with End Stage Renal Disease don't die from the kidney failure or dialysis; they die from complications to the heart and stress it puts on the body.  There's also a high risk of infection, anemia, electrolyte problems, etc.

I know things won't be perfect once I get a kidney - there will be challenges with the anti-rejection drugs and lots of doctor visits.  But I won't have to be in bed at 9pm (unless I want to!), I'll be able to take a long, leisurely bath, and I'll be able to travel without taking a U-haul.  And, because Josh is giving me a live kidney (vs. a cadaver kidney), my chances of having to go back on dialysis will be very, very low for another 15-20 years.

I've had four people try to give me a kidney - all from my workplace!  The first found out that she has the same disease I have (policystic kidneys), the second person that tried was on a medication that is bad for kidneys, and the third had a blood pressure problem.  The good news is that they all found out about their problems because of the extensive testing they went through to try to donate and are now being treated.  The bad news is that I didn't get a kidney.  I've also been called as a "backup" for kidneys 15+ times now.  I've fasted and waited, but I always got a call that said, "sorry, the kidneys went to somebody ahead of you on the list".  Now Josh has gone through most of his testing and things are looking good so far.  I'm trying very hard not to get too excited until we know for sure (which will be when I wake up from surgery and they tell me the kidney is working!), but I'm starting to believe it's real this time.

Yes, I'm one of the lucky ones.  And even if something happens with our last few tests and I don't get a kidney from Josh, he's still my hero and I'm so lucky to have such a kind, generous friend.