Time to get real...

On this date three years ago, Seth and I delivered balloons for a staff event at the kidney and pancreas transplant center at Cedars Sinai in Beverly Hills.  Even though I had kidney issues then, I had no idea that in three years, I would be in that exact same building as a patient.  I wonder if I joked about maybe being back there someday if I ever needed a transplant.  I bet I did.

I've been thinking about writing another blog post almost every day since the last one, but just haven't been able to muster the energy.  I am in bed as I type.  With each passing day, I get more and more fatigued, and closer and closer to kidney failure.  But because Seth is such a great partner, I didn't realize until a few days ago how much time I spend in bed these days, and how much more easily I get tired.  When I mentioned it to Seth, he said that he had noticed, too.

Although I look healthy, although I still have a sense of humor, although I can still do what is necessary, I am sick.  After years and years of not being affected at all by this disease, it is now on my mind every day, almost all day.  And it's gonna get worse before it gets better.  The train has left the station, and it's picking up speed.

The good news is that with my mammogram last week (it was clean, as was my Pap smear), I completed the pre-qualification checklist given to me by Cedars.  That means that as soon as this Thursday, my grandmother's birthday, my case will be presented to the transplant committee, and they will hopefully approve me to get on the cadaver transplant list.

While this is a great start, it's only the beginning.  There are  over 100,000 people waiting for a cadaver donor, and most wait many, many years for a kidney.  In the meantime, their kidneys fail, and they have to go on dialysis to live.  Make no mistake about it, DIALYSIS IS LIFE SUPPORT for people with kidney disease.  We cannot live without the functions that our kidneys provide.

Most people know someone who does dialysis.  Kidney failure is not uncommon.  But what you may not know is that even under the best circumstances, dialysis is like a second job.  Hours and hours a week must be spent hooked up to machines to do what broken kidneys cannot.  And as is true for most things, a machine cannot truly replace what nature does, and so one never feels totally well on dialysis.

THERE IS A BETTER WAY.  And that way is a living donor.  A living donor would allow me the possibility of receiving a transplant before my kidneys fail completely, meaning no dialysis at all.  Kidneys from living donors also tend to have better outcomes and last longer.  At the very least, a living kidney donor would minimize the time I would need dialysis, and therefore minimize the negative affects of dialysis on my body.

So how do you find a living donor?  How do you deal with the disappointment that comes when those closest to you don't seem to realize that they're the best chance for you, especially when you feel like you wouldn't hesitate to get tested for them?  I'm starting to struggle with this.  I've always been a balls-to-the-wall loyal friend/family member, and now that I'm the one in need, it's tough.  Do they not understand how sick I am and that I will be getting sicker?  Are they afraid of the thought of giving up a kidney?  Do they just not care about me?

Whatever the reason, I can no longer tiptoe around the subject.  I need a kidney, and the best and fastest way for me to receive this gift of a healthy life is through a living donor.  Friend, family, or stranger, it doesn't matter.

Here are a few simple facts about living donation from www.kidney.org:

• You only need one kidney to live a healthy, long life.
• Most donor surgery is done laparoscopically, meaning through tiny incisions.
• The recuperation period is usually fairly quick, generally two weeks.
• The cost of your evaluation and surgery will be covered by my insurance. The hospital can give you extensive information on this.
• You will have a separate team of healthcare professionals to evaluate you as a living donor. Their job is to help you understand the risks and benefits and look out for YOUR best interests.

ARE YOU A MATCH?  Several people have asked my blood type.  But here's the thing!  Blood type may have NOTHING to do with your ability to help me get a kidney!  HOW?  Because Cedars is a world class hospital that actually does incompatible transplants.  They can treat me with medicine that will keep my body from rejecting a kidney that is not a perfect match!  But wait, there's MORE!

If you were to be approved to be a donor but I was not able to receive your kidney, your kidney could go to someone else in exchange for their donor's kidney going to me!  There have been paired donations like this involving up to 30 people!  The bottom line is that ANYONE who is healthy enough to give a kidney can help me get a kidney.

I know, it's not a simple thing for everyone, considering donation.  But I have to ask.  For my future, for my husband, for my kids.  Have questions?  ASK!  Call the transplant team!  And if you decide it's not for you, I'll never know you even called!  As I mentioned in a previous post, HIPPA laws protect your privacy throughout the process, so you are protected. There's also a ton of information on the internet about being a living donor, and there are also facebook pages for living donors, where you can read about other people's experiences and ask questions.  I even have a good friend who donated a kidney in a paired exchange. who would be happy to talk to you about it.

LIVING DONOR COORDINATORS:

If your last name starts with A-K, call Jessica at 310.423.8463

If your last name starts with L-Z, call Miguel at 310.423.4718

AT THE VERY LEAST, PLEASE, SHARE MY STORY!  Even if you would never consider kidney donation, you may have a connection that will!  You could literally change my life just by sharing my story on your social media, at work, or wherever it comes up.  

I NEED YOUR HELP.  If I have ever been there for you in any way, be there for me now.  You CAN make a difference.  

And to those of you that continue to share my story, THANK YOU from the bottom of my tired heart.  I am forever grateful.

Wishing you health, happiness, and love,

Lisa

I know, I know, I look good!  LOL But my kidneys are failing and I need a donor!