The Big Project

This year starts a new chapter in my mom's life, and possibly mine.  Mom needs a kidney transplant, and I'm attempting to be a live donor.

Our family has a history of Polycystic Kidney Disease (PKD).  Polycystic means multiple cysts, so people with PKD have multiple cysts on the outside of each kidney. These cysts grow and multiply over time, causing the kidneys to get bigger. Ultimately, they shut down.  There's no cure, are there are only two forms of treatment:  dialysis and transplantation.  Here's a pretty picture of a polycystic kidney next to a normal kidney.  Nasty, huh. 

My Grandpa had PKD, and he passed it on to four of his five children.  My Mom is the oldest and has known she's had it since she was 22.  They discovered it when I was born.  The good news about PKD, if there is any, is that it works slowly.  Most people with it don't have problems until after they're 40.  My mom is 60, and throughout her whole life her kidneys have been losing their function.  Right now they're functioning at about 23 percent.  If it gets under 20, she'll most likely have to go on dialysis.

Her brother has already had one transplant and is on the waiting list for his second (the first one lasted more than 10 years).  Two of mom's three younger sisters have it.  Four of my 15 first-cousins have it, but most of them have not been tested.  My sister was adopted, so there's not chance she has it.

And me?  Well I don't know yet because I've never been tested.  I'm scheduling a sonogram (the only way to detect it) to find out.  If I don't have it, I move on to the next step in the process, which is a cross-matching of our blood to determine what antibodies we each have.  If I pass that test, I complete a full medical history.  If there's nothing in that history that disqualifies me, I attend a seminar -- yes, a seminar -- with my family to understand the risks/rewards of being a live donor.  The rewards are easy to understand.  The risk to me is, I can't see the future.  If for some reason I develop a medical problem that hurts my remaining kidney, I'm in the same boat Mom is now. 

We don't know what comes after the seminar because that's all the further my dad made it trying to be a live donor.  To protect his privacy, I won't say why he was rejected, but it wasn't because the kidney wasn't a match.  Most live donors are rejected because it could endanger their lives.  As you can imagine, it wasn't a happy day.

Of course if I do have PKD, this fun little process will most likely repeat itself in the future, but this time I'll be the one on the transplant list.  But I don't want to sound morbid -- some PKD patients never need a transplant.  Kidney degradation happens at different rates in different people.  And by then, who knows; there may be a cure.

Our local public radio station -- Kansas Public Radio -- ran a very interesting story about a new development in the quest for a cure.  It just so happens the world's foremost expert on PKD is Dr. Jerad Grantham, a nephrologist at the University of Kansas Medical Center.  He's also the co-founder of the PKD Foundation, which is located in Kansas City.  Dr. Grantham's, and the PKD Foundation's, work has advanced the search for a cure and promotion of the cause considerably over the years.

There will be a lot more to tell about this story as time goes on.  I plan on blogging it all.  I'm not doing it so people will feel sorry for my mom, or me.  I'm not doing it because I'm marketing for a kidney (but I will if it's necessary).  I'm doing it because it's my way of dealing with the situation.  Right now, I'm treating it like a project.  It's simply something we have to deal with, so I'm doing what I do in any "big project" situation:  get organized, get the facts, understand the problem, lay out a plan.  I know at some point this situation will get very emotional and my left-brain dominant, type-A personality will crumble.  And that's why I have the blog.  It's much easier for me to write about such feelings than discuss them.  Good or bad, right or wrong, that's me.

Comments

[Mason Cole]

Good luck with all this, Jeff. It can't be easy.

Good to have you blogging again.

[jenne]

Thank you for posting this. I love this post, and you know why. I love that you are going through this process. Even though I hate that you have to. I'm so proud of you. My goodness you are going to learn so much - about you, about your mom, about life.

Glad you are back.

J'

[Jodie]

My thoughts are with you & your family. I have at least a positive to add. My friend Susie was tested to be a match for her brother-in-law earlier this year and against all odds she was a great match. His family has diabetes and that disqualified almost all his blood relatives. Her experience was great. They did it at St. Lukes and she bounced right back, and so did he! I am in awe of someone who can be that self-less & brave!

[Jeff Risley]

I appreciate everyone's thoughts -- Mason, a faithly reader of my blog; Jenne, a faithly friend; and Jodie my good friend from years ago.

[Becky Loboda]

Wow. Jeff. First, I'm so, so, so elated that you don't have PKD. Double good stuff--you don't have to deal with this terrible disease personally and you could help your mom to live many, many more years.

On a personal note, my brother-in-law, Kevin, has known he had PKD for about 25 years. I think I've told you that before. Kevin's father and brother had it, and many others in the family had symptoms of PKD late inlife--But that was before they had really identified it. Dr. Grantham was Kevin's dad's doctor.

And, Kevin participated in a clinical trial in Florida a little while back to test a drug designed to treat the disease. He was there for three weeks and met many PKD patients. And, starting in December of last year, Kevin started a regimen of the drug (one of only 110 people nationwide who qualified) to test dosage, frequency and effectiveness.

Kevin always says that he doesn't think his participation will help his case--BUT he does it because he believes it could help someone else. Maybe it'll help some of your cousins!

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