Sunday, May 27, 2012

What I Learned While Watching TV

I recently read that Sarah Hyland had a kidney transplant. Not familiar with her? She's a 21-year-old actress on "Modern Family," one of my favorite TV shows, and has been battling kidney disease since she was nine years old. While those close to her obviously knew what she was going through, her health was not public knowledge.

Her father was a match (how cool!) and she had her transplant a few weeks ago.

I read several of her post-surgery interviews, and what I found most interesting was how she was able to work despite being completely exhausted from the disease. She talked about the tricks she used to conserve energy while on the set, and how she maximized her character's lazy teenager persona. All of that sitting around and texting that Haley (her character) does? Turns out that is strategic.

I watched a few episodes this week, paying particular attention to Haley's movements. And true enough, she is usually seen sitting down or leaning against something. It seems simple, really, but it's these little things that help her save energy and make it through filming.

I can learn a lot from Sarah/Haley. My job -- and the long commute it takes to get there and back -- takes a lot out of me. Most days I'm so fatigued that by the time I get home, I'm running on fumes. I make dinner and then crash -- only to have to get up and do it all over again. I've been working hard at managing my schedule, and while some adjustments have been easy -- like saying NO more often -- I still need to get better at pacing my day. The good news? I'm starting to figure out my own tricks for keeping myself rested and happy.

Who says you can't learn anything from watching TV?  

Saturday, May 19, 2012

Organs, anyone?

I signed up for the Michigan Organ Donor Registry tonight. I've thought about doing this for years, but I never took action. And yes, I have some organs that aren't worth a damn, but who knows? Maybe I have some random body part that could help someone else. And maybe the day will come when I'll need a new kidney. I can't imagine being OK with receiving an organ but not being willing to donate. So, I joined.

I'm wondering where other people stand on this issue, so I created the poll below. Have you signed up for organ donation? Have you decided against it? I realize that this is a very personal decision; there's not a right or wrong answer.

Friday, May 18, 2012

More Friday Fun with Kidneys

Sodium is my Kryptonite. I'm on a low-sodium diet, although my attempts at following the diet are laughable. That's why this cartoon resonated:

Wednesday, May 16, 2012

Stage 3

Chronic kidney disease, like many things, is most easily defined in stages. I'm at Stage 3. My nephrologist never talks about this -- I think she's more concerned with other specific test results than this overall labeling system -- but my glomerular filtration rate (GFR) does put me at the high end of Stage 3. So my kidneys still have some spunk left in them, even though they're not filtering the waste from my blood like they should be.

A few things to note:
  • Healthy adults have a GFR of 140, although anything over 90 is considered good. 
  • A GFR of less than 15 is kidney failure.
  • Stage 3 is in the 30-59 range.
  • I'm in the 50s. 
This by no way gives a full picture of what's going on -- the stages were developed so that doctors have a guideline for treatment. But it lets you know where I fall on this 1-5 scale. 

Wednesday, May 9, 2012

Up Next

The 2012 Grand Rapids Kidney Walk gave me so much.

It gave me a chance to talk about my disease in an open, honest way. It let me spend meaningful time with my family. It allowed me to give back to others. And it took my mind off of worrying about my next round of laboratory work. I'm grateful that I had something so positive and rewarding  to focus on these past few weeks.

Now it's back to staring at my lab order.

Dr. Harder has asked me to do more lab work in mid-June, and I already have the lab order in hand. It's the basic stuff:

Renal Metabolic Profile (Electrolytes, BUN, Creatinine, Calcium, Phosphorus, Albumin, Glucose)
CHD (Coronary Heart Profile - Cholesterol, Trigs, HDL, LDL)

Spot test for Protein and Creatinine Clearance
Urine Mineral Analysis (UMA)

I've included links for anyone who wants to better understand the tests and what they measure.

I'll probably go the week of June 11. 

Monday, May 7, 2012

We Did It

What a day! Team Giffy's Kidneys raised more than $1,000 for the National Kidney Foundation!!  Thanks to everyone who donated to the team and supported such a great cause. :)

Thursday, May 3, 2012

T-shirts Ordered!

The kidney walk is this Sunday! Big thanks to my nephew Drake and my sister Denise for collaborating on our team T-shirts. Drake came up with the initial concept -- my kidneys sword fighting (ha!). I then showed the design to Denise, who suggested a famous quote from John Paul Jones: "I have not yet begun to fight."

John Paul Jones was a Scottish sailor and the United State's first well-known naval fighter in the American Revolutionary War. Jones' ship was badly damaged during battle, and a British captain taunted him, asking if Jones had surrendered. Jones responded with "I have not yet begun to fight" -- and he and his crew then fought back and captured the British ship.

The quote is perfect -- it not only complements Drake's drawing but it also shows how I'm feeling about my kidney disease. Don't think that this disease has defeated me. I have not yet begun to fight.

What makes the quote even more relevant is that John Paul Jones died of kidney disease. He had interstitial nephritis. I wonder how much longer he could have lived if he had access to the health care options that I have.
Here is Drake's original drawing: 

The front of the T-shirt has a cool "Giffy's Kidneys" logo, also created by Drake, that uses a kidney to spell the G. I'll post pics of the actual T-shirts on Sunday.

Do I have a cool family, or what?