Risley Ranch

Aunt gets a new kidney

As I've mentioned before, my family has a history of Polycystic Kidney Disease (PKD).  It's genetic, and on my mother's side.  Mom celebrated her one-year transplant anniversary in April, and she's doing very well. Her brother has had two transplants.  And then on Mother's Day this year, we got the good news that my Aunt Marietta was getting her transplant.  Her local paper had a great story about it (my Aunt is the one on the right).

I, luckily, do not have it, but many of my cousins do, and it's likely some day they, too, will need transplants.  For my family, and the thousands of other families out there needing kidney transplants, do one thing for me:  agree to be an organ donor when you renew your driver's license.  You'll save multiple lives, and you won't be using them anymore anyway :)

What a kidney-transplant scar looks like

My mom's a trooper.  She's doing incredibly well as she recovers from her kidney-transplant surgery.  She moves more slowly than normal, she can't lift anything heavy, and her energy level is low, but other than that, she's normal.

She's staying in Denver with our cousin, Rosemary, who is more than an awesome host.  I stayed with them two days last week.  What a fun time.  The one-on-one time with Mom was so good -- it's something I haven't done for some time, I'm sorry to say.  And I got to know our good cousin Rosemary better and get a family history lesson at the same time (more on that later).

Mom was a good sport and let me take a picture of her incision:

It's 8-10 inches long and is located on her right side.  It runs diagonly from her pubic area up to the bottom of her rib cage.  I didn't expect it to be stapled.  Makes it look a little Frankenstien-ish, doesn't it. 

That little hole is where they inserted a tube to drain fluid after surgery.

They did not remove her other kidneys.  They stay in and continue to function, although minimally.  The new kidney sits in a little pocket in her abdomen and works in concert with the other two.  In fact, her surgeon said as soon as they hooked up the new kidney, it pinked-up and began producing urine.  That usually doesn't happen for a couple of days.

The biggest dangers now are rejection and infection; infection because she's on immunosuppressive drugs to help stop rejection.

And boy is she on a lot of drugs:  two immunosuppresives, three different antibiotics, calcium pills, aspirin...she's taking between 10 and 15 pills each day.  The pharmacy bill for month 1:  $2,900, $1700 of which is the two immunosuppresives, Cellcept and Prograf.

A little side note to this story...Mom's brother, who had a kidney transplant 10 years ago, was on a transplant list in Kansas City to receive another kidney because the first had worn out.  Three days after Mom's surgery, he got the call and had his transplant.  He's doing well also.  Definite family karma going on.

I want to thank everyone who has emailed or commented good wishes for Mom.  It's clearly helped in some cosmic way.

A kidney for Mom

Exciting news!  My Mom, who has only been on the kidney transplant list for three months at Presbyterian-St. Luke's in Denver, Colorado, received a kidney.  Her surgery was yesterday morning, and she's doing very well.

Her transplant coordinator called her at 1 a.m. Thursday, April 20.  A perfect-match kidney (6 of 6 antigens) was available.  She needed to be in Denver that night to prep for surgery at 7:30 a.m. on Friday, April 21.  We haven't confirmed yet the donor's situation, but we've heard it was a young male from Tennessee.

Just to put it in perspective, 6 of 6 corresponding antigens is very, very rare.  My kidney had 5 of 6 corresponding.  And these days they're doing transplants with 1-3.  Pretty incredible.

We spent the day with her yesterday, but she slept most of the time.  Coming out of a three-hour surgery is no easy task.  Today she'll be up and walking around, and she's supposed to be able to leave the hospital by Tuesday.  Because my parents live five hours from Denver, they'll have to stay in the City for another three weeks for check-ups.  The key now is to make sure her body doesn't reject the kidney.

We're very thankful today.  Thankful for the family of the donor.  Thankful for the doctors and nurses who are taking care of Mom.  And thankful for the awesome power that brought this about.

Got soul?

Once a month our PR group has a Soul Event.  It's a chance for us to do something together that's fun and demonstrates the soul of our organization.  We've volunteered at Harvesters, acted like kids at Kaleidoscope, and just hung out at someones house, talking and eating pizza.

At yesterday's soul event, we painted.  We used real paint (courtesy of our client Golden Artist Colors) and real canvasses.  Our assignment:  paint how we felt that day.  Wow.  Feelings for me yesterday were right at the surface, so the assignment was easy.  Here's my work of art (and I use that term loosely):

Maybe. Maybe not.

I can't donate a kidney to my mom.  Our transplant coordinator called yesterday and said of the five antigens they check for compatibility, one was incompatible.  And one's all it takes.  (Small update -- I mis-understood the science.  They actually check 6 antigens, and for most donors all it takes is compatibility of 2 to 3 of the 6.  So in our situation, having 5 compatible was outstanding.  However, in our situation, my last one was actually identical to mom's, so that's bad!?.  It's a little complicated, and I'm probably still not getting it right, but the bottom line is, we were very, very close).

All things considered, my mom is taking it well.  She's a trooper.  I, on the other hand, am depressed about it.  I'm a problem solver.  I'm about solutions.  I want to fix things.  And I can't fix this.  So I feel helpless, and I'm not used to that feeling.

"There's a reason for everything," Mom always says.  And that works, whether you're a Christian and you believe God is calling this shot or you're an atheist and you believe it's simply biology and evolution at work.

Maybe.  Maybe not.  To be a donor, I had to first face my own issue -- do I have PKD?  I was tested.  I don't.  That's great.  I can help Mom.  Maybe, maybe not.  I do the blood test for compatibility.  I'm not.  That's bad.  Maybe, maybe not.

There is a Taoist story of an old farmer who had worked his crops for many years. One day his horse ran away. Upon hearing the news, his neighbors came to visit. "Such bad luck," they said sympathetically. "Maybe," the farmer replied. The next morning the horse returned, bringing with it three other wild horses. "How wonderful," the neighbors exclaimed. "Maybe," replied the old man. The following day, his son tried to ride one of the untamed horses, was thrown, and broke his leg. The neighbors again came to offer their sympathy on his misfortune. "Maybe," answered the farmer. The day after, military officials came to the village to draft young men into the army. Seeing that the son's leg was broken, they passed him by. The neighbors congratulated the farmer on how well things had turned out. "Maybe," said the farmer.

Robert Fulghum is one of my favorite authors/philosophers.  His book "All I Really Need to Know I Learned in Kindergarten" is the one that made him famous.  But he published another book in 1993 called "Maybe (Maybe Not)."  From the introduction:

"I do not believe that the meaning of life is a puzzle to be solved.  Life is.  I am.  Anything might happen.  And I believe I may invest my life with meaning.  The uncertainty is a blessing in disguise.  If I were absolutely certain about all things, I would spend my life in anxious misery, fearful of losing my way.  But since everything and anything are always possible, the miraculous is always nearby and wonders shall never, ever cease.  I believe that human freedom may be stated in one term, which serves as a little brick propping open the door of existence:  Maybe."

I don't know, maybe the fact that I can't donate a kidney means I'll have one available for another family member that needs it someday.  Maybe it means I'll really need both kidneys someday.  Maybe it doesn't mean anything at all.

Maybe is how I'm dealing with it.

My blood is in the mail

Or more precisely, in a FedEx bag on its way to a lab in Denver so it can be cross-matched with my mom's.  This is the next big step in the Big Project.  We're hoping for a negative result, which means the antigens in my mom's blood won't fight off my blood, and thus won't fight off my kidney, if I'm ultimately able to donate it to her.

Kidney month, day

March is National Kidney Month, and March 9 is World Kidney Day.  The PKD Foundation has materials available on its website to help promote the occasions.  But I'm a little un-impressed by their approach.  I know their primary mission is science, but science takes funding, and funding comes from fund-raising.  Their promotional approach is just so typical -- typical of most not-for-profit marketing efforts: no imagination, no big idea, no excitement, no motivation.  If any type of organization should be embracing new media and blogging it's not-for-profits.  They generally have small marketing budgets, lean staffs and little experience.  But what they do have is people like me -- their "brand loyal" members who are already talking-up the organization.  Engage me, please!  But I seriously doubt any PKD Foundation staff members will ever read this post.  And that's a shame.

Next step

My journey on the path to kidney donor is moving forward.  I received a package this weekend from Mom's transplant coordinator, Katherine -- a blood collection kit.  My blood will be cross-matched with Mom's to make sure her antigens won't fight off my blood, and therefore, my kidney.

If all is well with the blood compatibility, I'll then undergo a battery of tests -- "a full medical workup," Katherine said:  another ultrasound/sonogram of my kidneys; a full-body CAT-SCAN, to look at my arteries; a medical history; and I'm sure they'll throw in a hernia and prostate exam, just for fun.

As a side note, I found another kidney-related association:  The American Association of Kidney Patients.

Causenetworking

I've followed a spattering of new Web sites lately (discovered via Emily Chang's eHub) that are really interesting.  I'm categorizing them as a mashup of cause/advocacy sites & social networking sites -- "Causenetworking"?  My favorites so far:

8by1 -- a "wishlist" that lets you "evangelize your wishes for the world, and connects you with similar-minded people..."  I wished for a cure for polycystic kidney disease.  In my wish, I'm able to suggest actions people can take to help the wish come true and provide links to additional resources.  Since I signed up last week, one other person -- Dukie from Belgium -- has noted he/she wishes this, too.  I love the power of linking individuals worldwide via their wish/cause. 

Standpoint -- Like 8by1, but for beliefs.  I added a my belief that "Polycystic Kidney Disease can be cured" and linked to the PKD Foundation and a story about a recent discovery in the field.  Standpoint lets me subscribe to several different feeds to keep me up to date on who shares and is supporting my belief.

GiveMeaning -- I call it a "micro-funding" site.  They call it a site for the "$5 philanthropist" that is "based on the premise that many of us would gladly give a few minutes of our time and a few dollars if we knew it could actually affect someone or something we care about."  So far, there are no "GivingGroups" associated with PKD research or the PKD Foundation.

Are you starting to see a pattern here.

Cluckoo -- This is a site that lets neighbors talk over their virtual fences.  Cluckoo describes it as a place to help people in a neighborhood share information, experiences, etc., with each other (like if you get burned by a retailer in your neighborhood, or if you discovered a great restaurant, you can tell everyone in your neighborhood about it.)  We live in a fairly small neighborhood, so I just talk to my neighbors the old fashioned way -- face to face.  However, think about the application of this in bigger cities.  Or how local "happenings" can be followed by not-for-profits or companies.

If I were CEO of the PKD Foundation (or any charity or company), I'd be monitoring these sites closely and taking part in the conversations they spark.  I can think of all kinds of ways brands can get involved with these Causenetworking sites -- donate funds, provide information/advice, send free product, raise awareness -- and in the process, develop a relationship with the people in these communities.

No PKD!

I don't have Polycystic Kidney Disease!  I just got back from my sonogram appointment, and my kidneys are perfectly normal, according to the technician, Michelle.  She said technicians normally don't say one way or the other, but because it was clear my kidneys were fine, she told me.

I watched the screen as she did the sonogram...very cool.  The whole process took 15 minutes.  A normal kidney is 10 cm long, and mine is 10.06 cm.  She said a kidney with PKD would look like it was full of black holes (mine were not); plus, the kidney would be enlarged, especially at my age.

My doctor still has to confirm all this, which I hope she can do today.  Assuming she agrees, then I can move on to the next step as a potential live donor for Mom.  My world was in balance today.