Wednesday, December 5, 2012

Who's Counting?

My nephrologist has me on a strict low-sodium diet: 1,500 mg a day -- which equates to less than one teaspoon of table salt. The diet is challenging but doable at home and nearly impossible when dining out at a restaurant. Do you realize how much sodium is contained in most restaurant dishes? It's unreal. 

Luckily, many restaurants have websites with easy-to-use nutritional calculators so that I can plan ahead. That's what I did the other night, when it was 7:30 p.m., I was still at work, and I knew I was never going to make my one-hour commute home without stopping on the way. I was determined to make a good choice, but I also wanted what I wanted. And that was Chipotle. 

I used Chipotle's calculator like a mad scientist, making choices, changing ingredients, and doing everything I could to keep my desired meal under 1,500 mg. My sodium count for the day was miniscule, thanks to Kashi Whole Wheat Biscuits Cinnamon Harvest sodium free cereal for breakfast and leftover baked chicken for lunch (no sauce or dressing).

My choice: a burrito bowl with rice, black beans, fajita veggies, sour cream, cheese, guacamole and tomato salsa that checked in at 1,490 mg. I should have ditched the salsa and the guacamole, but where's the fun in that?

I was over my sodium count for the day, but no one had to know. It would be my little secret.

Until my nephrologist walked into Chipotle and stood in line with her husband, about two feet away from me. I wanted to curl my arm around my burrito bowl, draw it close to me, and say, "Eyes up here, lady. No looking at the bowl." Or scream "FIRE!!" and hope she sprinted out before seeing me. I was having a hand-in-the-cookie-jar moment.

My panic was fleeting, thankfully. She immediately recognized me, gave me a big smile, introduced me to her husband, asked how I was feeling, and then went about her life. And I went about mine. 

She never once looked at my bowl of food.

And I enjoyed every bite.   

Wednesday, November 21, 2012

West, Meet East

I'll never forget the day my brother Rob channeled his inner Mike Rowe.

Now, these two men will never be confused. Rowe is the host of the Discovery Channel's Dirty Jobs, a show that profiles laborers and some of the greasy, grimy, and sometimes disgusting jobs that are necessary in our economy. My brother has the personality to host his own TV show, but all of that mess and dirt? Not a chance.

Hint: This is not my brother.

One day, Rob was telling me what he would do if he lost his job. He listed job after job that he would happily take -- all "Dirty Jobs" worthy -- if it meant providing for his family. I vividly remember our conversation because A.) he's not Mike Rowe-ish and B.) he was so earnest. He meant every word.

Mostly, though, I remember the conversation because I couldn't relate. I couldn't comprehend the drive and motivation to provide for a family. To feel a sense of obligation to others. To be willing to try new things and let life take me down a different path.

I used to think that the reason I couldn't relate is because I didn't have kids, and if I did, well that would change everything. Those kids would be the reason I would push and push and not give up. Those kids would make me scratch and claw and fight like crazy.

Turns out I was wrong, again. Having kidney disease has made me realize that I do have someone to fight for: ME. Somewhere along the line I lost sight of that. The disease has motivated me and awakened a resilience that I didn't know I had.

I do have an obligation, and it's to myself. And I owe it to myself to do whatever is necessary to feel better. That's why I am now embracing alternative medicine. I started supplementing my traditional western medicine treatment plan with a more holistic approach and now see a doctor who uses acupressure and focuses on my body's energy channels. It sounds kooky, but it's working. I've had several treatments and have noticed an improvement in my overall health. I don't feel so tired (the brain fog has lifted), and my stomach issues have subsided. I already knew that my body responded well to acupuncture, so it's not that surprising that the acupressure is working.

My favorite thing about this treatment is that it's drug free and doesn't interfere with anything that my U-M doctors are doing for my kidneys.

It feels good to be able to take care of myself this way. I can't control what's going on with my kidneys, but I can step up and do whatever it takes to keep myself as healthy as possible. 

Thursday, November 15, 2012


I was reading an article by columnist Scoop Jackson and was struck by his lede:

"Journeys. If we are honest with ourselves, we know that they never really begin where we think they begin and they hardly ever end when we think it's the end."

Jackson was writing about "Benji," a compelling 30 for 30 documentary on the life of Chicago basketball star Ben Wilson. (I highly recommend both the article and the documentary, by the way.) Jackson's sentiment about journeys had me nodding up and down in complete agreement. We really don't know where our journeys begin, and we rarely know or recognize when/if they're complete.

I often think about my journey with kidney disease. When did it begin? Was it the day my primary care doctor first flagged the blood in my urine? At the time, kidney disease wasn't suspected, since I didn't have any protein loss.

So was it a few months later, when the protein loss appeared?

IgA nephropathy can be familial. Was I born with this?   

Here's another theory: The antibody IgA (Immunoglobulin A) is found in the body's mucous membranes (respiratory passages, gastrointestinal tract, saliva, tears). It is thought that the body may produce too much IgA when fighting off an infection. IgA nephropathy sometimes appears after a major illness. Did my journey start in 1997, when I had a serious infection that left me hospitalized for eight days? Did that trigger my disease?

Or did my journey start the day I finally admitted I had kidney disease, stopped feeling sorry for myself, and started being an advocate? Was that the beginning?

All of this musing has led to an epiphany of sorts: IT DOESN'T MATTER. It doesn't matter what caused my disease. It doesn't matter how it ends. What is most important is the here and now. My journey is my journey. I don't have to figure out what it all means. I just have to trust. And live.  

Thursday, October 18, 2012

Going Cold Turkey

I'm on Day 2 of a fairly intense head cold, and frustration is mounting. Headache, sore throat, runny nose, sneezing. My medicine cabinet is full, yet utterly useless.

Having kidney disease means not being able to take over-the-counter analgesics like aspirin, acetaminophen, nonsteroidal anti-inflammatory drugs (ibuprofen, Motrin) and naproxen sodium (Alleve). All of these common pain relievers can be harmful to the kidneys; there is actually a form of kidney disease -- analgesic nephropathy -- caused by the overuse of these types of meds. My nephrologist has banned them all. Also on the "no-no" list are popular cold/flu remedies like Sudafed, DayQuil and NyQuil. There is not a single over-the-counter medicine that I've been cleared to take.

What am I supposed to do instead?

Rest, eat well, and drink a lot of water. In other words, what my Mom told me when I was a kid. :)

Here's hoping that I'm back at it soon.

Monday, October 1, 2012

Living with a Chronic Illness

I'm learning how to live with kidney disease, and I've figured out a few things along the way. I'm no expert, and what works for me won't work for everyone. But here are my tips for anyone who is forced to live with a chronic illness:

Be #1: Think of life as an airplane ride. Remember those pre-flight safety reviews we all ignore? The flight attendants tell us that, should the airplane lose cabin pressure, we should secure our own oxygen mask first before helping others. Makes sense. We won't be very helpful to others if we pass out from lack of oxygen. I put my oxygen mask on first every single day. Only then am I able to be there for others.

Talk: Let others know what's going on with your health.You don't have to share all of the gory details or overwhelm people with personal information. No one wants to see a picture of your 24-hour urine collection. I know this from experience. But it's OK to be open about your illness, to share how you're feeling, and to let people know how they can best support you.

Be a Sponge: Learn all that you can about your illness. Find credible online resources. Get copies of your medical records. Take a notepad to medical appointments, ask questions, and take notes. Never leave an appointment without having all of your questions answered. If you feel rushed, or if your doctor is not open to this type of dialogue, change doctors. Immediately.

Ditch People: Be willing to walk away from people who aren't good for you. This sounds harsh, but I can't think of a nicer way to phrase the sentiment. Living with a chronic illness means that you have less energy, less stamina, and less room for error. Don't let other people drain you emotionally. You don't have time for that.

Work the Plan: Follow your doctor's advice and guidelines. Cousin Johnny or Aunt Martha may have once thought about going to medical school, and they probably have great intentions, but the only people who should be making decisions about your health care are your doctor and YOU. Talk to your doctor, come up with a plan, and then follow it without fail. Take your medications every day. Adhere to dietary restrictions. Get enough sleep. Be willing to do whatever it takes to keep yourself as healthy as possible. And block out the other noise.

Be Gentle With Yourself: Understand that what you're going through is difficult. I have days when I'm frustrated with how much weight I've gained. Or I completely fall off of the low sodium wagon, then get angry with myself. These feelings and emotions are normal, yet my negative reaction doesn't get me anywhere. Beating myself up doesn't help me heal. The most important thing I've learned is the concept of being gentle and kind to myself. To be patient. To breathe. So follow my lead, and give yourself a break.

Tuesday, September 25, 2012

Who Wants to Hear a Good Report?

My kidney appointment went really well yesterday. I have a lot of updates so will do so in chunks:

  • My glomerular filtration rate (GFR) has improved and my kidneys are functioning better than they were six months ago! I went from a GFR of 59 to a 78 -- meaning that I'm now at Stage 2 of chronic kidney disease instead of Stage 3. This change is due to a reduction in my creatinine level; there's less chemical waste in my blood.
  • My diastolic blood pressure (resting heart rate) is still high. The systolic number (pressure when the heart is beating) is good.
  • I still have high levels of protein and blood in my urine. This, coupled with the high diastolic blood pressure, made my doctor decide to increase my blood pressure med; I'm now at the max dosage. I have another urine test in four weeks to reassess and see if this change is working.
  • There's some talk about doing a second biopsy if the proteinuria cannot be controlled. But we're in wait-and-see mode.
  • My file was changed to officially list my diagnosis as: IgA nephropathy (chronic). This was a change from the more generic diagnosis of mesangial proliferative glomerulonephritis. This may not seem like a big deal, but for me it's important. I like specificity.
  • I have (ugh!) gained 25 pounds since being diagnosed with kidney disease. (Did I say "ugh" yet?)
  • Quote of the day: "You put me to shame." -- my doctor, when I told her that I ran a 5K two weeks ago. :) 

All in all, not a bad visit!

Monday, September 17, 2012

This Sounds Fishy

One question I get a lot is: What kind of medications are you on?

And I think they're asking because of the kidney disease and not something else (", you're weird, are you taking anything for that?")

My nephrologist has me taking:

1. Lisinopril (blood pressure)
2. Spironolactone (diuretic)
3. Fish Oil. Lots and lots of fish oil.

It's the fish oil that people always find surprising. We've all heard about the benefits of omega-3 fatty acids, but lesser known is that fish oil has been shown to slow the progression of IgA nephropathy -- the type of disease I have. This was proven in a Mayo Clinic study in the 1990s and again in a 2004 study. The catch? Patients need to take a very high dose -- at least six grams a day. (The Foundation for IgA nephropathy has a thorough post that provides more information on this topic.)

Some nephrologists recommend fish oil for their patients. Some don't. When my doctor presented this option to me, we decided that it can't hurt to try. We opted for fish oil instead of other, harsher options -- like prednisone or an immunosuppressant drug.

My next appointment is Sept. 24, and I'm curious to know if we'll stay the course or if we'll try something new.

But for now, I faithfully take my fish oil.

And I just keep swimming.    

Monday, September 10, 2012

A Lasting Memory

Old friends. New friends. A very personal cause.

I participated in my second National Kidney Foundation of Michigan kidney walk last weekend in Ann Arbor. There were eight of us on the "Giffy's Kidneys" team, including the wonderful Pauline, who is also living with kidney disease. We raised $780, but that wasn't the highlight of the day.

The 1.2 mile walking path through the Concordia University campus led us to a gorgeous overlook, captured in the image below.

How could I ever -- for one second -- get down when I'm surrounded by friends and scenery like this?

Saturday, September 8, 2012

Holy **** I Ran a 5K!

I did it!!! I was able to run a 5K!

Rob and Denise joined me today to run this race -- and when I say "joined" I mean: coached, pushed, cajoled, encouraged, cheered and got me to the finish line in under 44 minutes. Denise did everything possible to give me confidence while Rob went into full coach mode and pushed me really hard the last mile. I think I needed these contrasting styles today. (And I definitely needed more cowbell.)

I can't believe how difficult this run was for me, and I am so grateful that they were willing to help me accomplish my goal.

A few highlights:

  • This was the longest distance I've run since being diagnosed with kidney disease.
  • I only stopped to walk three times.
  • I had a piece of my Dad with me; I wore a pair of his socks. I have no doubt that he helped give me the strength I needed.
  • The course had several small inclines that mentally kicked my butt.
  • I saw my friends Pat and Denny before the race, as Pat ran the 5-mile race at 8 a.m. It was GREAT to see them!
  • I always like seeing the finish line, but this time it was even sweeter because my Mom was standing there waiting for us and cheering like crazy. Love you Mom!
  • I slept for three hours when I got home. Tired, but happy. 

Thursday, August 30, 2012

Big Weekend Just Got Bigger

I now have a second reason to look forward to the weekend of Sept. 8-9:  my friend Trish has put together a Giffy's Kidneys team for the Ann Arbor Kidney Walk! The walk is on Sunday, Sept. 9 at 1 p.m. You can donate on line or join the team and walk with me. :)

So that's the 5K run on Saturday and then the Kidney Walk on Sunday. The fact that I have enough energy to do both of these things -- in the same weekend -- is very encouraging.

I feel renewed.

"We turn not older with years but newer every day." - Emily Dickinson


Sunday, August 19, 2012

Giffy by the Numbers

Here are a few interesting numbers from the last week:

14: Minutes I'm now able to run without stopping. My latest workout was 2 minutes walking/14 minutes running/2 minutes walking/14 minutes running/2 minutes walking.

2:  Number of siblings who are running with me in the Allegiance Race to Health 5K run on Sept. 8.

120:  My average systolic blood pressure last week -- exactly the number my doctor wants me to maintain.

3:  Number of times I forgot to take my meds this week. OOPS! This will definitely be an area of emphasis for the coming week.    

Friday, August 10, 2012

Why I Laugh


"In late 2006, The International Journal of Psychiatry in Medicine reported that people with severe diseases, such as chronic kidney disease, have better survival chances if they have a sense of humor and can laugh easily. The study was performed by scientists from the Nor­we­gian University of Sci­ence and St. Olav’s Hos­pi­tal in Trond­heim, Nor­way, on people with end stage renal disease who were on dialysis. According to the results, people who scored higher on having a sense of humor increased their odds for survival by about 31 percent."

Thursday, August 9, 2012

On Track

About a month ago, I announced that I would be training for a 5K run. Such a public declaration was a bit bold, considering that at the time I was only able to run two minutes without stopping. I've only posted once since then, so if you're thinking that I'm avoiding the topic because I'm not training, you would be..........WRONG!

I am now up to eight minutes of sustained running. My current program is a 2-minute walk followed by an 8-minute run -- repeated 3 times. It's slow and ugly, but it's working! I do this on Wed/Fri/Sun.

The 5K run is Saturday, Sept. 8, so I have another month to prepare. Race information is here in case anyone wants to run with me or come and watch. So far I think I have one fellow runner who will be by my side, my sister Denise. She has qualified for the Boston Marathon before -- so she's a real runner -- but how cool that she's willing to plod along with me for a few miles!

Sunday, July 22, 2012

Learning about Dialysis

I visited a dialysis center for the first time. I wasn't sure what to expect, and I was definitely nervous, but it was an important day for me. And it was completely humbling, since I was there with eight kids who showed a type of bravery and dignity that sometimes escapes me.

I was up in Flint visiting a Kids Camp put on by the National Kidney Foundation of Michigan. The Foundation makes it possible for 25 kids with kidney disease to go to camp each summer, and I was there to see the camp in action. The kids who are on hemodialysis leave camp twice during the week for treatment.

What struck me:

  • The way the Davita staff interacted with the medical team from the camp -- a U-M doctor and a nurse from Children's Hospital of Detroit. They were true pros.  
  • The different vascular access points the kids had. There were arteriovenous fistulas, arteriovenous grafts and one venous catheter.
  • The way the kids knew the routine and could answer all of the questions the staff asked about their specific treatments. This center typically serves adults -- not kids -- but everyone collaborated beautifully so that these treatments could happen.

As I stood there and observed, my knees were a bit wobbly, and my breathing was shallow. I won't lie. I've been very afraid of dialysis. Will I ever need it? And if I do, what type of treatment would be best for me? I may never get to the point of needing to make those decisions, but if I do, I hope I handle it as well as those eight kids did. They reminded me that courage doesn't always roar. Sometimes, courage is quietly doing what you need to do, even though it's not all that fun.       

Sunday, July 8, 2012

I'm Going to Walley World

There's a scene in National Lampoon's Vacation (1983) where Clark Griswold (Chevy Chase) stands at the edge of a hotel pool -- naked -- contemplating what he's about to do. His wife and kids are back in the room, yet he's moments from jumping into the pool to skinny dip with a woman, played by Christie Brinkley, that he just met on the road.

He swings his arms wildly in front of his body and manages to say, "This is crazy. This is crazy. This is crazy." before jumping into the water. Like most events in the movie, it doesn't end well for ole Sparky.

I've had my share of "This is crazy." moments in my life. Some were borne of peer pressure. Others were the result of stupidity. And a few were because I thought I was invincible.

Example: In 2009 I ran a half marathon (13.1 miles) without training. I was out of shape and had no business pushing my body that way, but a friend said "hey you should run this race seven days from now" and I somehow thought it was a great idea. On race day, I stood at the starting line, thought "this is crazy," and then made it the entire 13.1 without walking. 
I hadn't been diagnosed yet, but I was going through testing and knew something was wrong with me. I think I ran that day to prove that I was OK -- to show myself that I was still me

I tried another half marathon later in 2009 but it was a complete disaster, and I haven't run since. 
My big news: I signed up to run a 5K in September. I'm medically cleared to do this, but that doesn't diminish my nervousness. Right now, I can only run in two-minute intervals before transitioning into a walk. I'm following a training program designed for people who have never run before, because that's my new reality. I need to forget my athletic past.

The race is in Jackson, Mich., and while it's not as close to home as I would have liked, I chose it for three reasons:

1. I need a race with a big field. Races close to where I live are smaller, and that means there's a good chance I could finish last. Who needs that kind of ego crusher? 

2. The run is hosted by a hospital, Allegiance Health, and is part of a family wellness day. I like that. And I like knowing there will be lots of doctors and nurses around!

3. I spent eight days at this hospital back in 1997 with a bacterial infection that most likely caused everything I'm enduring today. This needs its own blog entry, and I'll try to get to that soon. But I really like the idea of running on the same site where I was once so sick.

The race is September 8, 2012, and although it's only 3.1 miles, I'm having a bit of a "this is crazy" moment. Can I do this? Am I healthy enough to train? I think these things, yet all I want to do is jump into the pool and take my chances. When Christie Brinkley asks,
"are you gonna go for it?", the only reasonable answer is yes!

I can think of two ways that friends and family can help me achieve my goal:

1. Consider running with me or being there that day to cheer.
Race information can be found here.

2. Consider training with me. I will be running on Wednesdays, Fridays and Sundays. Join me! Let me know if you're in town, and help me get prepared for this race. I need every push, every good vibe, and every ounce of energy I can get. 

Saturday, June 30, 2012

Cheering for Venus

Tennis star Venus Williams has won Wimbledon five times, yet when the 2012 tournament started last week she was bounced 6-1, 6-3 in the first round. Just like that -- she was done. I've always liked watching Venus play, but I really started cheering for her when I learned that she has an autoimmune disorder called Sjogren's Syndrome. Diane Pucin of the L.A. Times wrote that the disease "can leave her [Williams] feeling lethargic even when she has rested and eaten well and treated her body as if it is a precious heirloom. But the thing about precious heirlooms is that they can't just be taken off the shelf, dusted off and made new again."

I had never heard of Sjogren's (SHOW-grins) until my rheumatologist had me tested for the disease last year. I didn't want to do the test -- I was sick of tests and the accompanying poking and prodding -- but I think my rheumatologist is brilliant, so I agreed. She ordered a lip biopsy, and it was about as fun as it sounds. A doctor numbed my lip, made an incision inside my mouth, and then used tweezers to pull out about 5-7 tissue samples from my salivary glands. I cried -- not because it hurt, but because I was scared. All of the testing takes it toll emotionally.

I've lost track of how many diseases I've been tested for over the past five years. And most of the tests aren't  "one and done" -- I repeat them every six months, or every year, or whenever something else weird happens with my body. My case is challenging because I tend to show (and test positive for) different things, yet I don't always fall neatly into a diagnostic category. That's the case with Sjogren's. My test result was, in fact, positive. But, since I was on the "low end" of the testing scale, I didn't receive an official diagnosis from UM. I tested positive, but all that the doctors are willing to say is that I have Sjogren's-like symptoms. I take 400 mg of Plaquenil a day as a result.

My kidney disease, IgA Nephropathy, is also an autoimmune disorder, and the UM doctors aren't sure how the IgA and the Sjogren's fit together -- if they do at all. But I'm glad I'm in a healthcare system where the doctors collaborate on my care, and I'm sure they'll figure it out in due time. And I'm so focused on my kidneys that I never even think about the Sjogren's -- that is, until there's a major tennis tournament. Then I remember, and I watch Venus, and I hope that she wins!     

Thursday, June 21, 2012

More Labs

I had my protein/creatinine urine ratio tested again, and there's been some improvement since March. Reminder: The normal range for this is 0.01-0.18. Anything above 0.18 is considered elevated and indicates something called proteinuria -- excess serum proteins found in the urine.

My results:

1.03 in June 2012
2.04 in March 2012

It's still very high, but I'm glad it's not as high as it was in March.

Wednesday, June 20, 2012

No Guidance Needed

I have a very clear memory of Mr. Davis, my high school guidance counselor. His physical presence was unremarkable, but he once told me something that left an indelible impression.

His exact words:

"You will never amount to anything in life if you don't take a full math and science curriculum."

Ouch. Thanks, Mr. Davis, for failing to notice my writing talent and my interest in the humanities. That's a mighty well-rounded view of education you have, sir. 

My high school math and science courses consisted of biology, algebra and trigonometry. And then I'd had enough. Mr. Davis wanted me to take calculus, chemistry and physics, but I had zero interest. His method of motivation was the threat/insult mentioned above, and if anything that just made me resist his idea even more. Anyone who knows me knows that the harder you try to talk me into something, the more I resist. Taunting me won't help.

I never took the courses that he suggested. In college my math and science experience was just as sparse: two math classes and one science course -- geology -- otherwise known as rocks for jocks.  I took every English class I could find and filled the rest of my schedule with business and humanities courses. I loved college.

Now that I'm older, and I'm learning to live with CKD, I wish Mr. Davis had been more prophetic and said something like:

"One day, when you're much older, you may have a chronic illness that will require deciphering lab work and understanding how the human body works. You may want to take some more science courses."

I probably would have blown that off, too, but who knows? I do get very frustrated trying to make sense of my test results and trying to understand what's going on with my body. Case in point: This weekend I was at a wonderful outdoor party with close friends when I suddenly realized that I couldn't regulate my body temperature. It was SO hot (I was in Chicago, and it was crazy warm), and despite drinking water and going into the house to get into the air conditioning, I got to the point where I needed to go to the basement (the coldest place in the house) with a large ice pack on my head. It took about an hour for my temperature to return to normal. For a brief period I was very scared, as my body just felt completely out of control.

I'm now Googling homeostasis and trying to understand the role my kooky kidneys play in all of this. Was the weekend mishap due to my kidney disease? Or my meds? I'm still not sure. I've never had a reaction to the heat like that.

What I do know is that kidneys do a lot more than just make pee. They are responsible for regulating blood water levels, re-absorbing substances into the blood, maintaining salt and ion levels in the blood, and regulating blood pH. And I know that my kidneys have some challenges, so I need to be extra careful when I'm in extreme heat.

I'm still frustrated, but I'm starting to learn. Not bad for an English major, eh?

Monday, June 11, 2012


I attended a class today called "Taking Control of Kidney Disease." It was offered by Davita and led by a nurse and a registered dietician at a Detroit-area hospital. When I registered, I was told that there are typically 5 to 15 people per session, and that family members were welcome.

As excited as I was to take the class, I was worried what I would find when I walked in the door. I was afraid that I would be the only one there alone. Seems like I've used the word "alone" a lot lately. I know I have a big support circle, and a close family, and tons of great friends. So I'm not sure why I keep thinking that I'm in this alone. Yet I pictured a room full of people with CKD flanked by their loving families and me -- off in a corner -- fending for myself. (Am I dramatic, or what?)

I was wrong, as usual. There were only two people in the class -- me and a woman who was about 25 years older than me. I have a nephrologist at U-M. She has a family doctor who isn't answering her questions and is reluctant to refer her to a specialist.

The material was solid: ways of coping with CKD, understanding lab results, dietary guidelines, questions to ask your health care team. Stuff like that. They gave us a nice health diary where we can keep a record of our journey with CKD. The dietician reviewed my most recent lab work and offered feedback on my situation from a nutritional standpoint. And I learned about some new websites, like KidneySmart, that can help me learn to live with this disease.

My fears were silly. The class didn't expose me as being alone. Instead, the class showed me that I am VERY on top of my health care. I am in control. I have an incredibly smart nephrologist who is closely monitoring my health. I have some challenges, sure, but I've also done a lot to educate myself about CKD.

I'm so glad I went to the class. It wasn't earth-shattering information, but it was validating. And who doesn't enjoy a little validation?

Saturday, June 9, 2012

It's Not Delivery, it's Giffy's

Happiness is knowing how to make my own low-sodium pizza. It's all from scratch, baby!

Sunday, June 3, 2012

Low Sodium 101

I feel like I'm back in school. I'm trying to learn how to prepare low-sodium meals for myself, and so far it's been a bit overwhelming. I research online. I chart everything in a notebook. And I spend a lot of time standing in aisles comparing sodium content. Researching online is easy in the sense that there's a lot of information out there -- and it's hard because...ummm...there's a lot of information out there. There are resources; there's just so much to read.

Thankfully, there are several excellent low sodium blogs out there....written by people who know their way around a kitchen much better than I do. My favorite so far is Don't Pass the Salt. The woman who writes the blog is amazing. Her husband was diagnosed with congestive heart failure and high blood pressure a few years ago, and she threw herself into figuring out this low-sodium diet stuff. She shares recipes and information about pre-packaged foods, and it's an absolute goldmine. I want to hug her.

Now -- armed with access to her blog -- I'm ready to take the next logical step:  I'm going to find where they live and move in with them. I mean, she's already cooking for her husband. How hard would it be to put another plate on the table?????

OK. Maybe not. I realize that I'm on my own on this one. 

My first self-assigned task was to make homemade spaghetti sauce. I adore Italian food, but canned spaghetti sauce is loaded with sodium. Most brands run more than 450 mg sodium for a 1/2 cup of sauce. Yikes! On Friday I went to three different stores (Whole Foods, Buschs, Walmart) looking for the lowest sodium content I could find for canned, crushed tomatoes. I found a brand at Whole Foods -- bionaturae -- that has 30 mg sodium per 1/2 cup. I thought that the Dei Fratelli brand I found at Walmart had that beat at 15 mg sodium -- until I realized that was based on 1/4 cup. Good thing I was paying attention in elementary school math classes...

I followed a recipe that I found on the Don't Pass the Salt blog:

1 28-oz can salt-free/low sodium crushed tomatoes
2 tablespoons extra virgin olive oil
1/2 small onion, finely chopped
2-3 cloves garlic, minced or pressed
1 teaspoon dried oregano
2 teaspoons dried basil
1/4-1/2 teaspoon sugar

Saute onion in olive oil until translucent; add garlic and cook until fragrant. Stir in tomatoes, herbs and lesser amount of sugar. Bring to simmer; lower heat and simmer until thickened slightly, around 10 minutes. Taste, and add more sugar if needed.

I made the sauce and would give it a grade of B-.

It was alright, but I don't think I nailed the right herb combination. And, considering that I have zero cooking skills other than being able to read a recipe, I'm at a loss. I want to improve the flavor, but I'm not sure how. I'm hoping one of the Super Chefs in my family can help.

Until then, I'm planning my next task: homemade dough so I can make my own pizza. Should be entertaining.

Friday, June 1, 2012

One Week

I have one week to get my act together.

My blood pressure has been high for a few weeks now, and my nephrologist is giving me one more week to try and get it back under control. My goal is to be at 125/75 -- and back in late March and early April I was right in that target range. All was well. I'm not sure what's going on, but things are now drastically different. Here's a sampling:

May 24  158/86
May 25  132/83
May 26  170/97 
May 27  160/98
May 28  144/87
May 29  144/84
May 30  150/92
May 31  149/102
June 1    146/97

To say I'm concerned would be an understatement.

The doctor has me on a strict low-sodium diet (1,500 mg or less of sodium a day). I have been instructed to keep charting this and then report in again on Thursday, June 7. I've also been encouraged to exercise and to manage my stress. I've been walking every day since my trip to Colorado and even did a 10-mile bike ride last weekend with Lori and Chris H. It's the stress management part that hasn't been going so well for me.

On June 7 the doctor will decide the next course of action. 

But I have one week. I can do this!

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?

Monday, April 30, 2012

What They Knew in Junior High

This has nothing to do with kidney disease but is too good to keep to myself. As a bonus, it relates to a recent post.

I had a small-world moment on Facebook last week, when I noticed that one of my best friends (Aimee) was tagged in the same post as one of my childhood friends (Lonnie). Turns out they both live in the same city, have kids in the same school, and even live in the same neighborhood.

Aimee and Lonnie knew each other, but neither knew that they both had a connection with me. Until now. I'm sure that the conversation between someone who knows me really well now and someone who knew me really well as a kid was entertaining, to say the least.

Aimee mentioned she was coming to see me last weekend, and Lonnie unearthed some documents and sent them along -- including a photocopy of our junior high class mock awards. You know, stuff like most popular and best dressed -- and no, I didn't win either of those. But I did win two categories:

1. Class Optimist
2. Best Joke Teller

I have no memory of these mock awards and got a huge kick out of reading over the list. I was fascinated by the timing, since I just blogged about my writing style and how a co-worker pegged me as an optimist. So it must be true. I mean, even if you don't think handwriting analysis is credible, you can't argue with the wisdom of 8th graders, can you?

Maybe optimism truly is a part of my core being. I'm glad, because I need every ounce of positive energy to fight this fight.

Then there's this joke telling thing. All I have to say about that is:

So a priest, a rabbi and a duck walk into a bar....   

Thursday, April 26, 2012

Back on Land

My nephews Drake and Grant give me a hard time about my texting habits. Apparently I initiate conversations and then, after a few texts, I just fade away. It's like I'm done talking, even if they're not. I had NO clue that I do this to them.

I'm there, and then --  in an instant -- I'm gone. I'm not sure why I slink away, but I do. So I'm trying really hard to finish conversations and not leave anything unsaid -- and I'm taking that same approach to this blog. And trust me, it's not always easy to share the complete story.

About a month ago I posted that I'd been feeling woozy. This was something entirely new, and it scared the crap out of me. I went to U-M twice but each time left with more questions than answers. There was no inner ear issue. It wasn't my medications. During the second visit my doc examined me and then said "well, it wasn't a stroke." A stroke? I know that kidney disease puts me at a higher risk for stroke, so the mere mention of the word was scary.

More time went by, and my symptoms remained. I felt like I was rocking on a boat, plus I had major stomach issues. And there was no obvious answer as to why. This wasn't related to my kidney disease, but it had to be caused by something.

I was sleep deprived, cranky, frustrated, angry, and tired of feeling woozy.

That's when I had my epiphany: this had to be psychological. I've been under an intense amount of stress, and I wondered if these symptoms were the result of stress manifesting itself physically. As I read and researched more, it became obvious that my symptoms sounded an awful lot like anxiety. So I created my own course of action:


Guess what? I'm now back on land. The symptoms have slowly gone away, and I'm back to feeling normal (or, at least normal for me!). I'm so relieved -- not just because I feel better, but because I was able to know my body well enough to know what it needed.

So that's how the "woozy" story ends.     

Monday, April 23, 2012

More Morbid Humor

Anything kidney related gets my attention. I was looking for something to watch the other night when I noticed that "American Dad!" was airing an episode called "The Kidney Stays in the Picture." I had never watched the show before (it's an animated sitcom on Fox), and found it both hilarious and wildly inappropriate.

In one scene, Roger (an escaped alien from Area 51) explains how kidneys are removed: 

"You know how they take kidneys out? You’ll walk into your room and there will be plastic sheets all over the floor. Before you can react, a man in a ski mask will tie you to a chair with an Indian braided belt he got on vacation in Santa Fe. He’ll turn on some Huey Lewis. And then cut the damn thing out with a rusty keyhole saw. No antiseptic, no Novocain, no nothing! Just the song “Hip to be Square” drowning out your boyish screams."

The show ends with this little gem. (That's Roger holding the saw, channeling his best American Psycho.) Enjoy the morbid kidney humor!

Wednesday, April 18, 2012

May 6

You're familiar with the modus operandi of drug pushers, yes? The first few hits are free. After that, it's time to pay up, baby.

I fear I'm emulating that M.O. here. You know -- create a little blog, entertain the readers, get them to come back, and then -- WHAM -- ask for something in return.

Yesterday I realized that there's a Kidney Walk in Grand Rapids on May 6, 2012. I've formed a team -- Giffy's Kidneys -- and will be participating in the walk that day. Raising money is part of the drill.

Please consider going to the Giffy's Kidneys team page at the National Kidney Foundation of Michigan website. You can either join the team or make a donation on my behalf.  Just enter "Giffy's Kidneys" in the team name search box and it will take you to my page. The walk is a small event but what it represents to me is huge. It took me awhile to openly talk about having kidney disease, and those months of silence were scary. Now I'm ready to talk, listen, learn, educate and advocate. I figure that I must have kidney disease for a reason -- meaning I'm supposed to do something positive with this thing. The Kidney Walk is an initial step (pun intended).

Thanks to those who can be there in person on May 6 and to those who will be there in spirit. It's going to be a fun day!     

Monday, April 16, 2012

Under Pressure

Everyone has the same question for me:

"How will this disease progress?"

Unfortunately, there is no clear-cut answer. The doctors just don't know. I do have proteinuria -- excess serum proteins in the urine -- and that is a proven risk factor for the progression of kidney disease. That's why the focus is on stabilizing the protein loss and keeping my blood pressure under control.

I've never had high blood pressure, so it seems strange that blood pressure monitoring now plays such a big role in my life. Every day I take 20 mg of Lisinopril, wear my stylish little BP cuff, chart my numbers, and hope for stability. Dr. Harder wants me to be at 125/75 and recently asked me to track my BP for two weeks and report back. Here's how I did:

March 21  112/68 (pulse 73)
March 22  121/76 (pulse 74)
March 23  111/74 (pulse 78)
March 24  128/82 (pulse 66)
March 25  115/75 (pulse 78)
March 26  120/80 (pulse 88)
March 27  118/75 (pulse 73)

April 2       110/74 (pulse 75)
April 4       130/86 (pulse 73)
April 5       108/70 (pulse 67)
April 6       107/69 (pulse 71)
April 7       114/69 (pulse 73)
April 9       114/67 (pulse 80)

I'm doing well, especially considering I'm failing miserably at the low sodium diet. I was at a Detroit Tigers game recently, and I wanted a hot dog. Or a salty pretzel. Or popcorn. Everywhere I looked I saw -- and craved -- salt. Lowering the sodium in my diet remains a challenge for me.

I think I'll save that battle for another day. ;)

Saturday, April 14, 2012

The Good News is...

I recently had a large whiteboard installed in the office. It's about 6' x 4' and I use it to visually track the various projects my team is trying to juggle. It's in a common area, so many times when I'm writing, the staff will gather around to see what I'm doing and learn what projects are next. The other day, I had just finished filling up the board when someone said:

"Look how your writing slants upward. You're an optimist!"

That sent me Googling, and sure enough, my writing style does reveal me as an optimist. I do find handwriting analysis interesting, but most of all I was relieved that it didn't expose me as a raging lunatic. I mean, what if the scenario played out this way:

"Look how your writing [insert whatever style here]. Man, how do you get through the day? You're a mess!"

Being an optimist serves me well. I have no idea how my kidney disease will progress, but I'm confident that I can handle anything that's thrown my way. A very dear friend introduced me to the concept of "trusting your journey," and I have embraced that saying and all that it represents. True, I'm bummed out about all of this. I won't lie. But whatever happens is going to be OK.

Monday, April 9, 2012

How Can I Help?

A little over a year ago, my therapist mentioned a book called "Share the Care." This came up in conversations about my father's declining health and my mother's incredible commitment to advocating for and taking care of him. I was worried about him, of course, but was also worried about her.

I haven't purchased the book, but the premise is: You don't have to do it all alone. The person with the illness doesn't have to do it alone -- and people who care for loved ones don't have to do it alone. The best strategy for success is having a group of people who form a caregiving team. The link here explains this in a bit more detail.

I've been thinking about the "share the care" concept a lot lately, especially since my kidney disease has progressed and my energy level feels depleted. Friends and family members often ask "how can I help?" -- yet I've been reluctant to give a useful answer. I'm working on that. I'm trying to be more honest and authentic with how I'm feeling and what's in my best interest. That's why I offered to host Easter this year. It seems counterintuitive, I know. Isn't that just inviting stress? Maybe. But the last thing I wanted to do was travel. So I hatched a plan, worked ahead of time, and asked for help. And then, of course, my family helped in ways ranging from junk removal to room organization to sous chef work. They were amazing, and I am blessed to have such a great support team.

Remember gym class, when they used to pick teams? I never had a problem with this scenario, because I was either a captain who was doing the choosing or, if not, I was the first girl picked. A few of the females in my family had a different experience, though, and have expressed how they hated this aspect of gym class. It's nothing more than a bad memory to them.

So I want to say this to Lori, Danielle and Chris: I would pick you to be on my team any time -- and I would pick you again and again. You helped me so much this week and made it possible for me to be in my own home and not have to travel for Easter. Thank you for that.

Ray and Ethan helped with projects around the house, and Rob even did dishes. Jack-a-lacka!!

My mother helped just by her sheer presence. She is so strong and positive and always makes things easier for me. Patrick helped me by making me smile -- I'll always remember him jumping up and down when Avila hit the walk off HR. I didn't think he had "ups" like that. :) 

And then there's Grant. Like the junk guy said, "I didn't think they made 17 year olds like that anymore."

I realize how lucky I am.       

Thursday, April 5, 2012

Almost Famous

It's time for Fun with Kidneys! The following famous people all had kidney disease:

Wolfgang Amadeus Motzart
Emily Dickenson
Bobby Fischer
Erma Bombeck
Julia Child
Barry White
Cole Porter
Buffalo Bill Cody
Chester A. Arthur

They all led pretty productive lives.

So will I.

Monday, April 2, 2012

The Itchy and Scratchy Show

Rob recently asked me when my symptoms first appeared. I usually try to ignore Rob, but there was a good chance he was going to buy me dinner that night, so I played along and continued the conversation. (Oh, kidding! I'm just trying to entertain Nell.)

Kidney disease is known as the silent killer because by the time you realize you have it, lots of damage has already been done. I like to refer to it as the sneaky stealth bastard disease, but that's just a personal preference.

The first alarming symptom was blood in my urine back in June 2005. It was right before I went to Grand Teton National Park, and my test results were due as soon as I got back from vacation. At this point there was no protein, only the blood (microscopic hematuria), and so I was being seen by a urologist who was screening for bladder cancer. I had to be tested every three months, had three invasive procedures, and wasn't having a ton of fun. Then my urologist retired, closed up shop, and mailed me all of my medical records. Since he didn't hand over my case to anyone, I just stopped going to the doctor. Not smart, I know, but I just wanted it to go away.

Within a few years my fatigue started getting progressively worse, and again doctors chased random stuff -- even having me do a sleep study to see if I had sleep apnea. No one was thinking kidneys.

There was also another symptom that appeared around 2007-2008 that baffled me: the itching and scratching. It happened every time I exercised. I'd start running, the blood would begin pumping, and then like clockwork I'd start itching like crazy. I scratched like a crystal meth addict convinced that there are bugs in her skin. The intense itching only subsided when I stopped running. I'm sure I drove friends nuts, because I always had to bail from the workout. Now I know that this was one of 10 common symptoms of kidney disease. It makes sense. My kidneys are not able to clear the waste from my bloodstream, so my blood is filled with toxins that make me itch.

At the time, though, I was looking OUTSIDE my body and was sure it was detergent or body wash that I was somehow allergic to, and I cycled through dozens of products trying to find something that would make me itch less. I swear I tried every bar soap that Target carries.

So my first symptoms were little things that didn't seem to connect:
  • blood I couldn't see
  • fatigue that wouldn't relent
  • itching I couldn't explain
It was out of frustration and desperation that I made a rheumatology appointment at U-M, and it was Dr. Monrad (a total rock star) who very quickly ran all of the key kidney tests and referred me to nephrology. It was the first time someone took the time to look at everything and make sense of it all. She is my hero. 

Saturday, March 31, 2012

Thursday, March 29, 2012

Kidney Connections

It's taken me a long time to accept that I have kidney disease. I'm still not happy about it, but a few weeks ago I decided to stop being angry and instead focus all of my attention on improving my life. I've transitioned from "Why me?" to more important questions, like:

How can I help keep myself healthy?
What can I do to educate myself and others?

Starting this blog was the first step in this journey. I had been very reticent when it came to my health, as I didn't want anyone to know that something was "wrong" with me. I'd always identified as an athlete -- as someone who could just pick up and run a 1/2 marathon without training (which is something I did as recently as three years ago). The last thing I wanted anyone to know was that those days are over.

And I definitely didn't want to admit to myself that those days were over.

That way of thinking, however, gave the disease too much power. So I've been spending a lot of time lately researching kidney disease, and I've also started to be more open about what I'm experiencing. I'm determined to be an advocate, not a victim.

So imagine how cool it was to learn that every Noodles and Co. in Michigan was donating 25% of today's sales to the National Kidney Foundation of Michigan. And imagine how cool it was to send out an email this morning to my staff and student workers letting them know, and having EIGHT of them go to lunch with me and support the cause. Just thinking about it makes me emotional.

As a bonus, I met with someone from the NKFM today and asked about support groups. I was pleased to learn that the foundation has social workers, as I really want -- and need -- to be able to connect with people who can relate to my experience. 

It's starting to feel like I'm not so alone.  

Tuesday, March 27, 2012

Off Balance

I used to go on summer houseboat trips with an amazing group of friends. We'd enter Lake Cumberland in Kentucky, then venture further into the lake and spend about 3-4 days on the water in Tennessee. The houseboat had a hot tub on the roof, a big slide that would dump you into the lake, a grill out on the back deck and a full kitchen. We ate like kings and queens and partied like the young people we were. It was fun, cheap, relaxing, and one of the best times of my life.

The only part I disliked was getting off the boat -- not because the trip was over, but because for about a day I still had that rocking feeling like I was on the water.

I have that rocking feeling now, although I haven't been on a boat in years.

I went to U-M yesterday and saw my primary care doctor, since I've never experienced this before and every new thing that happens causes concern. At least to me. Dr. Stutz did an exam and concluded that it was not vertigo, and nothing was wrong with my inner ear. He thinks it may be caused by a virus, since I do have some other symptoms indicative of a GI virus. Use your imagination.

Here's the tricky thing, though. Dr. Harder (nephrology) had just increased my dosage of spironolactone (diuretic) to try and reduce my proteinuria. There is a correlation between the med change and when the woozy feeling began. Dr. Stutz doesn't think the wooziness is from the meds, but concluded that the first step in figuring this out is to go back to the original  dosage level and see how I feel.

Today was my first day on a lower dose. I stayed home from work and slept most of the day (see GI virus above). So this one, for now, remains a bit of a mystery. If I still feel woozy next week I'm supposed to go back and see Dr. Stutz.   

Sunday, March 25, 2012

U-M Study

I'm happy to share that I'm taking part in a research study at U-M. I signed all the paperwork at my visit on March 14.

Researchers are trying to develop a new urine test for diagnosing and treating people with kidney disease. The test is based on research already done at U-M that shows that a special cell in the kidney filtering system can be damaged and excreted into the urine. Researchers would now like to develop a new urine test that will pick up on this cell, thus being able to diagnose kidney issues quicker than in the past. I'm very happy to be part of this research and hope that in the future doctors will be able to catch kidney disease earlier.

My participation will involve the one thing I've gotten pretty good at: peeing in a cup!

The test will last three years, and there is a "normal" group and an "abnormal" group. I, of course, am in the latter.

The hilarious side of this was the paperwork, because it was obvious that too many lawyers get involved with this stuff. I understand the need for me to sign off on privacy issues, but there was actually a section that addressed what should happen if I get injured during the study. Injured?? I'm just peeing in a cup! Do they mean like if I fall off the toilet and hit my head? I don't get it -- but I did sign and say I would tell the researchers if I have injuries or side effects. lol

Saturday, March 24, 2012


I'm very generic when I talk about my lab work, and that's because it's just easier to say things are "better" or "worse." There are so many tests and so many things being monitored that it would be crazy to try and explain them all.

I do, however, want to be specific about one test: protein/creatinine urine ratio. The normal range for this is 0.01-0.18. Anything above 0.18 is considered elevated and indicates something called proteinuria -- excess serum proteins found in the urine.

My results:
0.72 in April 2010
1.20 in July 2010
1.17 in February 2011
 0.90 in September 2011
(Woo Hoo - see how it was trending back down???)

2.04 in March 2012
(Uh oh.)

Now that you know this is a key number that we're tracking, I can give you the ratio instead of saying "better" or "worse." 

Thursday, March 22, 2012

What's in a Name?

One of the most maddening things about my battle with kidney disease is that my doctor hasn't been able to 100 percent, beyond-a-shadow-of-a-doubt give an official diagnosis. For now, she's calling this:

Mesangial Proliferative Glomerulonephritis.

The medical dictionary defines this as: "Glomerulonephritis characterized clinically by the nephrotic syndrome and histologically by diffuse glomerular increases in endocapillary and mesangial cells and in mesangial matrix."


It's probably easier to think about it this way:

This disease is an autoimmune disorder, but its trigger is unknown. My autoimmune system isn't recognizing my kidneys as MINE, and are thereby attacking them. The result is that my kidneys aren't filtering properly.

All of my tests (and my biopsy) have pointed toward either lupus nephritis or IgA nephropathy as an official diagnosis, but because of how my tissue samples were incorrectly stained, we can't know for sure. Well, at least until another biopsy, and let's hope that doesn't happen soon.

Does this help explain what's going on?

Didn't think so....
After about 20 seconds of thought, I've decided to start a blog. I've imagined all of the exciting parts of my life I could share, like my hour-long commute, or maybe how I'm usually asleep by 9 p.m. every night.

Instead, I'm going to use this space to talk about my kidneys. So, the next time it's 9:15 p.m. and you think, "hey, I wonder how Giffy's kidneys are doing?" -- come visit.