Thursday, December 19, 2013

My Path to a Diagnosis

I've had 127 tests at UM in the past 15 months. I didn't realize this until today, when I was reviewing some test results in my health portal and finally did the math. One hundred twenty seven. And this is just the count since Sept. 24, 2012 -- when UM started using this new portal system. Who knows how many tests I've had since this all started.

And when did this all start, you ask? I trace it back to 2005, when my primary physician found blood in my urine during a routine visit.

Now, as 2013 is coming to a close, I thought it would be a good idea to provide a little recap of my health journey. Here is a clear and straightforward [*cough cough sarcasm alert*] graph that shows my path to a diagnosis -- which, by the way, I still do not have. Enjoy!

Friday, November 22, 2013

114 Days

It has been 114 days since I first heard the word "amyloidosis." I don't remember much about the phone call from my nephrologist on July 31 -- other than she sounded like someone just died. And she said that she was sorry. I had her spell amyloidosis for me, and I jotted it down, but for the most part I was extremely confused.

August and September were somewhat of a blur. I was referred to hematology. Had a bone marrow biopsy. Heart tests. A fat pad biopsy. Blood and urine tests. I went to Mayo. Old tissue samples were stained. It has been 114 days of worrying and waiting that has all led to this:

Today my hematology team broke up with me. And they didn't even pull a George Costanza ("it's not you; it's me"). Nope. Instead they told me it was because of ME -- or more specifically -- because they can't find evidence of amyloidosis in me. I received an email that read, in part, that "we are very confident in our assessment that you do not have amyloidosis." They do not feel that I need any follow up in the hematology clinic. They did, however, recommend that one of my other doctors check for abnormal proteins once a year.

As far as hematology is concerned, amyloidosis is off the table. While this is a great relief, amyloidosis will always be my Boogie Man. It will be the shadowy figure lurking in the dark. And I'm not sure I will ever completely let my guard down -- especially knowing that my proteins will continue to be monitored.

So where do we go from here? I see the liver doctor on Jan. 3 so that he can weigh in on my liver issues, and then I see my nephrologist on Jan. 13. I'm guessing that the diagnosis will be fibrillary glomerulonephritis and that we will finally discuss a treatment plan (Rituximab infusions) in greater detail.  


Thursday, November 21, 2013

The Suckage Scale

I had a liver MRI last week, and here's what I learned: they should never shove an overweight woman with anxiety into a tube. I found the test uncomfortable. There is no physical pain -- you just lie on your back in a tube -- but it's loud and confining and I fought claustrophobia the entire time. Thirty minutes seemed like three hours.

Afterward, I needed to vent. I am so sick of these tests and just needed to complain a bit before regaining my composure. I texted my sister Danielle, who is A.) hilarious and B.) colorful in her use of language. Most of what we text can't be repeated here, but trust's good. She's always able to make me laugh. She's also empathetic but doesn't pity me. I appreciate that. Anyway, in one recent conversation she was asking me about a test and wanted to know how it compared to the other tests I've had. More importantly, she wanted to know if it was "complete suckage." 

Complete suckage? Lol. Never heard that one. That's when I knew I needed to create a "suckage scale." So, for you Danielle, here's my take on some of the tests I've had the last few months -- and how much they sucked. 

 (Thanks to my friend Jason for the artwork!)

Wednesday, October 9, 2013

Where's the Easy Button?

Remember when Staples first introduced its "easy button" commercials? Have a disaster of an office? Need to find something that's buried under the mess? Just hit the easy button.

My nephew, Ethan, bought a button for my dad. Not that my dad needed to clean or locate something. Ethan just knew his grandpa would find it entertaining -- and would see its potential as a comedic tool. But my dad didn't hit the button when he wanted something to be easy. No. That would be expected. And boring. Instead, he would hit the button to signal that something was long and drawn out and convoluted. Or when something made no sense or was difficult. Like at the last Christmas we celebrated with him -- as he battled Parkinson's disease and dementia and struggled to unwrap a gift. After fighting with the wrapping paper and tape for torturous minutes, he leaned over to the table beside his chair -- where he kept the button -- and slowly pressed down. "That was easy." It oozed sarcasm, and we all laughed.

If my dad were still here, he'd be hitting that damn button every time I gave a medical update. Because this has been one twisting-turning-confusing-complicated mess. And it's anything BUT easy.

Here's the latest: My doctors are still unable to say with certainty whether this is fibrillary glomerulonephritis or AL amyloidosis. Signs seem to be pointing away from amyloidosis, but there are still questions. And since they want to be more confident, they are going to do some more tests. It's important that we get this right, of course, since the treatment options for the diseases are different -- not to mention expensive.

I did more blood work today, likely have more appointments and tests in the future, and may not have a definitive answer for a few more months.

All I can do is wait.

In the meantime, I'm thinking about my dad -- and smiling.

Tuesday, September 24, 2013

News from Rochester

Are you ready to learn about a new disease? I know you are!

Dr. Leung (pronounced "learn" btw) thinks I have something called Fibrillary Glomerulonephritis. It is a rare kidney disease characterized by fibril deposits in the kidneys. He does NOT think this is amyloidosis. So that's good! But fibrillary glomerulonephritis is no walk in the park, either. Again, it's rare - only 1 percent of kidney biopsies have this result. There is no cure and no proven treatment and most cases advance to renal failure within a few years. Dr. Leung is still working with the pathologist on one more thing - and he's suggesting that UM stain 2 of my prior biopsies for amyloid just to rule it out completely. But it's looking like i have fibrillary glomerulonephritis and will start treatment with a month of chemo (rituximab - a drug used to treat lymphoma). It's delivered via infusion.

I go to UM on Tuesday, Oct. 1 and will know more then.

Hard to believe that I'm feeling happy about needing chemo and the high chance that i'll need dialysis - but compared to the amyloidosis it sounds pretty good!! Ha. Life is funny.

Thanks everyone for your continued support and prayers. I still have a fight on my hands, but now I think I know the enemy.

Friday, September 13, 2013


"Heigh-Ho, Heigh-Ho,
It's off to Mayo I go"

It's official. I'm going to the Mayo Clinic (Rochester, Minn.) the week of September 23.

I've only been to Minnesota once. It was March of 1991, and I was a 22-year-old senior in college. My basketball team had advanced to the Sweet Sixteen round of the NCAA Division III Tournament. I was young. Excited. Hopeful. And I felt invincible.

Now I'm a bit older and not feeling so fearless or invincible anymore. But I do remain hopeful and optimistic about what I will learn, and I am very excited to get to meet Dr. Leung in person. Mayo is ranked #1 in nephrology, and Dr. Leung is an expert in both nephrology and hematology and works with amyloidosis patients. 

I think this will be a good trip for me.

Bring it on, Minnesota.

Tuesday, September 3, 2013

Curiouser and Curiouser

My echocardiogram and fat pad biopsy came back negative. (Rumor has it they found some deep dish pizza, a peanut butter shake and some onion rings in the fat pad, but that cannot be confirmed.)

UM is now consulting with Dr. Nelson Leung, a Mayo Clinic doctor who has a dual appointment in hematology and nephrology and seems to be the guy who can figure this out for me. Maybe he can help me navigate out of this rabbit hole.

Thursday, August 22, 2013

So Far, So Good

Nothing has been found yet that shows that the amyloids are systemic. There was nothing out of the ordinary in my blood work, and they didn't capture any amyloids in my blood marrow biopsy.

I have two more tests on Monday, August 26:

1. Fat Pad Biopsy at 11 a.m.
2. Echocardiogram at 12:30 p.m.

The nurse practitioner will call me again next week (probably Thursday) with the results of those two tests.

I love being a challenge.

Friday, August 16, 2013

August 16 Appointment - Hematology

[NOTE: Today's blog entry was written by my sister-in-law, Chris. I already knew she was a super hero. Turns out she's a heck of a writer, too! Thanks, Chris!!]

Mom and I went today with Darcy to her appointment with UM’s Hematology clinic to discuss the results of her May kidney biopsy that identified amyloid cells in her kidney. First I’m going to give you some background (which may be old news to some of you), then the facts that we learned from the visit today, and finally the current plan/next steps.

So, here we go:

Darcy had a kidney biopsy in 2010 that gave her a not crystal clear diagnosis of lupus nephritis or IgA nephropathy.  Since then, she’s had her kidney function regularly monitored. Recently, the amount of protein in her urine increased significantly which led her nephrologist to order another biopsy – the infamous poorly-done-results-taking-forever May test. Turns out that sample went back and forth between the Mayo Clinic and UM because it “looked” to the pathologist like there were amyloids in the sample, but they didn’t “light up” with the usual tests. Mayo ultimately did a more sensitive test and eventually confirmed the presence of AL amyloids. So the first unusual finding was how long it took and how hard it was to find the amyloids. The second is that the evidence of the IgA nephropathy from the 2010 biopsy wasn’t present.

So, that got her referred to the Hematology clinic. Darcy was first examined by a rock star Nurse Practitioner (named Kristen Detweiler) who explained what they know and what they were looking for.
  • There are amyloids in Darcy’s kidney tissue.
  • They are the AL type – which are the kind that are usually made in the bone marrow.
  • They are not the type of amyloids that are produced as the result of a chronic condition.

  • They need to find the “factory” in Darcy’s body that is making the amyloids.
  • They need to find out if the amyloids are hanging out in any other organs.

Before this morning’s appointment, Darcy had blood drawn that will let them know if there are amyloids in other organs. Those results are expected by mid-week next week. Darcy will have an echocardiogram next week to see if there are amyloids in her heart.  These two things will answer the question about whether her kidneys are partying with the amyloids alone or if they have company in other organs.

As I said above, the type of amyloids found by Mayo are known as AL amyloids and are usually made in the bone marrow. The NP explained that when this is the case, plasma cells in the bone marrow keep making the same protein and “fold it the wrong way” – which makes the amyloids. This led to the 1:30 bone marrow biopsy Darcy had this afternoon.  They took a fluid and a bone sample to look for these abnormal plasma cells as well as to look for the presence of amyloids themselves in the bone marrow. (NOTE: Turns out the rock star NP was the person who did the biopsy and the whole process was about a zillion times better than the May kidney biopsy. They even had a person in the room whose sole job was to rub Darcy’s back during the entire procedure!)

The NP told Darcy that she would call her Wednesday with the results of the blood tests and that she’d hear the bone marrow biopsy results by Friday next week.

If the bone marrow biopsy does not confirm that the “factory” is in the bone marrow, they will then schedule another biopsy just under the skin. Sometimes amyloids can be produced in a person’s fat cells. There’s no reason to do this procedure if they find that they are being produced in her bone marrow. They will only order this test if the bone marrow biopsy results are negative.

So here are the possible scenarios:

1.  The amyloids are found to be ONLY in Darcy’s kidneys. This would make her rare disease even rarer. If this is the case, the UM doctor said that he would have to consult with one of the handful of doctors in the country who see more amyloidosis – most likely at the Mayo Clinic.

2.  The factory is in either Darcy’s bone marrow or fat cells, which makes it systemic. This means that the amyloids would have the potential of infiltrating other organs – which we do not want.

3. The amyloidosis is found to be systemic and there is evidence that amyloids have taken residence in other organs.

Before any treatment plan can be created they have to figure out which of the above scenarios describes Darcy’s amyloidosis. Dr. Lebovic said that any way around it, she would need some form of treatment; they want to get rid of the amyloids she has. The only specific situation we discussed is if they find that the amyloids are being produced in the bone marrow and the kidney is the only organ affected, then he’d likely recommend a bone marrow transplant. He said the real positive about that treatment is that you are basically closing the factory – which gives longer term protection from the disease. 


The staff in this clinic is great – Darcy is in good hands here. They are very aware of the waiting for answers Darcy has had to endure and are working to get answers for her now as soon as possible.

We’ve all known forever that Darcy is strange – well, this confirms it.  She’s been sharing info with us for a while about how it has been difficult to completely diagnose her accurately.  Today’s information, while helpful, is still riddled with questions. Then, when you start to think about what we learned today and go back and think about what Darcy has heard in the past from her other doctors, you see a lot more. We were joking today about her being a future medical journal article (or two or three…). But it feels like some of the pieces are starting to come together. Today’s team clearly feels they’re on a path to get answers. 

We’ve all been alarmed to some degree with the possibility of this diagnosis.
  The NP put it this way, amyloidosis can be a tragic disease – but when it is, it’s usually when the amyloids are found in the heart and the patient presents significant symptoms of heart disease.  We won’t know anything for sure until we have the test results next week, but given what they know now, they don’t seem to think that Darcy is on that end of the spectrum. 

We won’t know next steps for a little while
. At this point, the type or length of treatment Darcy will have is unknown. So all questions associated with that - from timing to side effects to when will she feel better, etc. won’t be answered for a little while still.  But it seems to me that we’ll know a lot more in about a week.

Well, that’s it for now. Feel free to fire off any questions you have and I’m sure we’ll all hear about test results as Darcy gets them. Now, have a good weekend and GO TIGERS!!!!


Tuesday, August 13, 2013

On the Bright Side...

I stopped by the UM Cancer Center tonight to pick something up and was downright giddy to see that there's a Jamba Juice Smoothie Station there. I Googled this (of course!) and it just opened AND it's the first Jamba in Michigan. Woot!

My bone marrow biopsy is scheduled for this Friday afternoon, and I know where I'm heading once the procedure is over and I'm discharged. Orange Dream Machine Smoothie, here I come!
Jamba Juice Logo

Monday, August 12, 2013

Plot Twist

A few months ago, a friend was chiding me for my lack of new blog posts. I told her that kidney disease is like a slow movie with a compelling plot. The changes can be subtle and take time, but they come -- and are significant.

The latest twist? My kidney biopsy results are back and, according to Mayo Clinic, I have something called amyloidosis -- a rare blood disease. I have been referred to U-M hematology and have an appointment at the Cancer Center's Myeloma Clinic on August 16.

All of the sudden, my slow moving plot has turned into an action film.

I am Bruce Willis saying "Yippee Ki Yay."

I am Optimus Prime, driving down country roads in Adrian, get shot at by the enemy. (Credit goes to Jeremy Sell for this Transformers 4 footage.)

And I'm thinking that things are going to change.

Wednesday, June 19, 2013

Searching for Answers

It's been exactly one month since my biopsy, and I still don't have results. Crazy.

Since I'm not getting answers from U-M, I've decided to look elsewhere for my test results. I debated several solid information sources -- Nostradamus; a Magic 8 Ball; 1-800-PSYCHICS; the crazy lady down the street -- before turning to something with much greater statistical validity: a fortune cookie from Panda Express.

I was convinced that this cookie would provide the answers I so anxiously crave.

So imagine my surprise when I opened the cookie and found this:

Saturday, June 1, 2013

Post-Biopsy Update

Quick update: I felt OK the first few days after my biopsy, but then something didn't seem quite right. I was having a hard time taking a deep breath and overall just felt a little bit "off."

On May 28 I went back to UM and was diagnosed with:

fever (100.5)
flank pain
retroperitoneal bleed

My doctors ran several tests, debated a CT scan, and opted to take the "wait and see" approach. They had me come back on May 30 to repeat the tests. And they called me on May 31 so that I could describe how I'm feeling.

My fever is gone, but the flank discomfort remains.

I'm hopeful I'm on my way to feeling better.

Thursday, May 23, 2013

My Kidney Biopsy Experience

I just had my second kidney biopsy. Beforehand, I decided to document as much as I could and then write a blog entry so that others facing a biopsy would have a first-hand account of my experience and would know what to expect. Sure, there is a lot of information online, like this page from Johns Hopkins, but I wanted to provide a real account from an actual procedure. Big thanks to my Mom for being there and helping me track the details.

May 22, 2013

7:30 a.m.
Arrived at hospital.

7:48 a.m.
Gave urine sample and changed into gown.

7:52 a.m.
Warm blankets delivered. Yes!
Vitals taken: temperature 98.6; blood pressure 103/59

8:10 a.m.
Blood drawn and IV port put into right arm.

8:20 a.m.
Researcher came to ask me to participate in a study of kidney disease patients in Ann Arbor, Detroit, Chicago and Philadelphia. I agree. (More on this in a future blog entry.)

8:40 a.m.
Research interview ends. Paperwork is signed.

8:55 a.m.
Taken for kidney ultrasound. Hospital staff expresses some confusion as to why I'm having a separate ultrasound; say it's mostly done on transplanted kidneys, not native. They roll me down the hall anyway.

9:20 a.m.
Ultrasound done; back in original prep room. And then I wait. No meds. No IV in port.

10:05 a.m.
Taken to 7th floor for kidney biopsy.

10:15 a.m.
In procedure room. Blood pressure taken. Signed several forms giving approval to do the procedure and acknowledging that I know the risks. I am asked to roll over onto my stomach as they prep and wait for the doctor.

10:25 a.m. (THE ACTUAL BIOPSY)
Procedure begins. I'm on my stomach. Doctor verbally walks me through each step. Says he has viewed my ultrasound and things look good. Then he uses ultrasound machine again to find my left kidney and determine where he wants to make the incision. He makes a mark on my back. Then he cleans/sterilized my back. Then he again uses the ultrasound to make sure he still likes the spot. He does. Then he puts dressing around the area he will be working. Now comes the Novocain. He warns this will "feel like a series of bee stings" and he makes several pokes. Then he gives it a moment to kick in and numb the skin. It does. He makes the incision in my back and I don't feel a thing.

He then goes back to the Novocain again, going through the incision and pushing the drug deeper into the muscle. We wait a few minutes.

He is now ready to make a series of punctures in order to extract kidney tissue. So far, this has been just like when I had a biopsy in 2010. So I'm anticipating some pressure, a few punctures, and it would all be over. Only it didn't go so smoothly this time.

The first puncture was typical. I hold my breath when instructed so that my body stays steady. Some pressure but no pain. But the second puncture was awful. I felt every part of it, gasping in pain as the tool burrowed into my back. The rest of the procedure is a bit of a blur. There's some scurrying as the medical team tries to figure out what happened. The doctor first guesses that we may "have strayed outside" the Novocaine area; he then uses the ultrasound and notices a hematoma (bruise). I am bleeding, a typical complication of a kidney biopsy.

I am crying, the pillow under my face wet from my tears. I'm trying to keep my composure so that we can finish the procedure, but I am completely freaked out. The first biopsy didn't feel like this. At all. I am in pain. I am scared. And I'm so upset that this is part of my life.

I don't have a clear memory of what happened next, but the doctor did do three more punctures and took a total of five samples. He then checked the samples under the microscope to make sure that he got what he needed. During this time, I continued crying. Nurses put pressure on my back to stop the bleeding.

10:50 a.m.
When he knew the tissue samples were good and I was done, he came over and sat in front of me so I could see him. As he talked, and I knew I was done with the procedure, I completely lost it and started crying really hard -- the hyperventilating type of crying. I pride myself on my pain tolerance and my ability to be stoic, but this was just a complete meltdown.

Bandage was applied. I was rolled back onto my back. The nurse gave me 650 mg of Tylenol for my pain and gave me some water.  Everyone left the room. I sat and sobbed.

11:20 a.m.
In recovery room; try not to cry when I see my Mom for the first time.

11:35 a.m.
IV fluids started.

12:10 p.m.
I fall asleep (thankfully).

1:15 p.m.
I wake up. BP is 110/55.

2:35 p.m.
Blood is drawn again.

3:20 p.m.
I am allowed to get out of bed to use the bathroom. There is no bleeding.

3:35 p.m.
Doctor visits. He explains to me what happened during the procedure, although I still don't totally get it.

3:50 p.m.
Given more Tylenol; moved to another recovery room.

4:15 p.m.
BP is 120/73

4:30 p.m.

Wednesday, April 24, 2013

Name That Ailment

It's been awhile since I've posted, but there's a reason. 

My nephrology appointment was March 25, and it was sobering. My doctor reminded me that there still isn't a clear picture of what's going on with me. I left that day with a sheet of paper that listed six diagnoses related to my visit. (I added the definitions below for clarity. All are from the Free Medical Dictionary.) The sheet read:

Diagnoses Associated With This Visit:

1. Glomerulonephritis - Primary (Renal disease characterized by the inflammation of the glomeruli)
NOTE: IgA is a form of glomerulonephritis

2. Proteinuria (The presence of excessive amounts of protein in the urine)

3. Hypertension - Chronic (Abnormally elevated blood pressure)

4. Gammopathy (A disturbance in the synthesis of immunoglobulins; proteins having antibody activity increase greatly in the blood)

5. Fatigue (Physical or mental weariness)

6. NASH - Nonalcoholic Steateohepatitis (Fat deposits in the liver and inflammation not due to excessive alcohol abuse)

There was also a list at the bottom of the sheet called "Problem List" that had the above plus:

1. Undifferentiated Connective Disease Disease (An early stage of a connective disease disease, in which the predominant organ of involvement is not yet manifest)

It was enough to make my head spin.

The doctor ordered 22 tests that day, and soon it was time to play the waiting game again.

I hate waiting for test results. And yet this seems to be the new rhythm of my life. Take some tests, wait anxiously, get confused by the results, and then undergo more tests. Test. Wait. Repeat. The tests always seem to lead to more questions -- and more questions = more tests. And it's really getting old.

So I think I needed to be away from the blog for a bit. I just couldn't bring myself to give this update and then have people ask questions that I couldn't answer, no matter how badly I wanted to provide answers.

What have I been up to since my last post? There's been a robot diversion out east. I watched a lot of basketball games (Go Blue!). There was a field trip to The D with a dear friend. And about two weeks of a serious bug/illness that I can't seem to shake.

But now I'm back. Next up is a kidney biopsy (my second) that has yet to be scheduled.

Let the journey continue. 

Monday, April 22, 2013

Sunday, March 10, 2013

Life Imitates Hoops

Indiana beat the University of Michigan 72-71 today in men's basketball to win the Big Ten Championship. As a UM fan, I was disappointed in the outcome -- but what really struck me was how much this game reminded me of my journey with kidney disease. I'll spare you the obvious sports cliches ("it's not over til it's over"), and I won't provide a complete statistical breakdown of the game. Instead, I give you:

Five Ways Today's IU-UM Game Reminded Me of Life With Kidney Disease

1. It Doesn't Always Matter Who Your Parents Are
Glenn Robinson III went 1-for-2 from the free throw line with :52 left and Tim Hardaway Jr. missed the front end of a one-and-one with :38 left. It didn't matter that both have fathers who played in the NBA. These moments were all about the sons. It was time for the sons to deliver, and the ball didn't care about what their fathers had accomplished.

How does this relate to kidney disease? Genes only mean so much. While some types of kidney disease are hereditary, mine (IgA nephropathy) is not. As far as I know, I don't have any relatives who have kidney disease. I had one cousin with diabetes (RIP, Brian), but that's all I'm aware of. Diabetes and high blood pressure are two major causes of kidney disease. My father didn't have kidney issues. My mother doesn't have kidney problems. This disease is all about me.

2. You Can't Do It Alone
I cringed several times when UM came down the court and immediately jacked up a shot. I'm all for being aggressive, but there's a reason each team gets five players on the court. Pass the ball, force the defense to move and defend, and increase your chances of finding an open player.

I am also guilty of trying to do too much myself. I sometimes forget that I have a big team of doctors, alternative medical specialists, family and friends, all working with me to keep me healthy. I get in trouble when I don't lean on others and let people help.  

3. You Have to Handle Pressure
UM led by four points with :52 left but failed to score a basket the rest of the way -- going just 1-for-4 from the free throw line and then missing two layups in the final seconds. A win would have meant a share of the Big Ten title (along with Indiana, Michigan State and Ohio State). Instead, they lost, and Indiana won the title outright.

Living with kidney disease also means having to handle pressure. Maybe stress is a better word, but the point is the same. Having a chronic illness is difficult, and it takes a tremendous amount of composure to stay focused. You have to execute the medical plan and not get distracted by all that life throws at you.

4. Momentum Swings Come and Go and Sometimes Don't Make Sense
Basketball is a game of runs and momentum. Case in point: IU led 10-3 to start the game, only to get outscored by UM 12-0 over the next few minutes and fall behind.

My life with kidney disease definitely mirrors this. At times, I'm able to put together a nice little streak of momentum, and everything seems to fall into place. Then, suddenly, the disease takes it turn and dominates me. I can't always predict when this is going to happen, or how long it will last. My goal is to keep fighting long enough so that when momentum turns again, I will be ready to capitalize. 

5. You Often Don't Get Out What You Put In
I can't imagine how much time UM put into preparing for this game, only to come up short. Practice. Film sessions. Walk thrus. But in sports, one team wins and the other loses. That's just how it goes.

My kidney disease is autoimmune, so it's like my body has a mind of its own. I can do everything the right way -- diet, exercise, rest, manage stress -- and my tests will still show that the disease is progressing. It can be extremely frustrating. But there are no guarantees in life. All I can do is try my best. 

TGI March

Hello, March. So nice to see you!

March is National Kidney Month, and organizations like DaVita and the National Kidney Foundation of Michigan have been tweeting stats and helpful information at a dizzying pace. Most shocking to me is that 1 in 9 adults in the state of Michigan (and 1 in 10 adults nationwide) have chronic kidney disease -- although most are unaware because kidney disease offers very few visible clues.

Early detection is the key to helping slow down the progression of the disease.

My hope is that all of my friends and family will ask their doctor for a kidney screening in 2013. Will you do that? Will you ask for a screening the next time you are at the doctor? 

Saturday, January 26, 2013

Chrysanthemum Blossoms

My blood test results are back, and everything seems to be status quo. The doctor ran eight tests and all of my results fell within normal ranges. There were several deviations from September -- some were higher, some were lower -- and that led me to Google and to try and figure out what these fluctuations may mean. I am the poster child for cyberchondria. I am Sheldon Cooper (Big Bang Theory), having abdomen pain and coming to conclusion that I'm dying due to accidental ingestion of chrysanthemum blossoms. (Watch Video)

I have no idea why I obsess and try to research everything, but yet there I was, typing in test names and trying to make sense of test results. And then I thought of Sheldon, and I realized how ridiculous I was being, and I stopped.

My doctor never called, so I'm not worried. :) Sheldon Cooper appendix

Sunday, January 20, 2013


I was told that I'm trending. That would be kind of cool if we were talking about Twitter.

It would also be a miracle, since I have 20 followers and tweet about once every 18 days.

The quote was "you're trending up" and it was from my nephrologist, who called to discuss my latest protein/creatinine urine ratio. She then ordered more labs, and I had blood drawn on Jan. 18. I expect to have those results early in the week.

What does this mean? The goal all along has been to try and slow down the progression of my disease. The increased protein/creatinine urine ratio shows that the current course of action isn't as effective as the doctor and I had hoped it would be. The next treatment step would be something more aggressive, like suppressing my immune system -- and that wouldn't be done without another biopsy.

Looks like biopsy #2 will soon be a reality. 

Saturday, January 12, 2013

You've Got Questions

I thought I'd compile a list of some of the questions I've been asked over the past month:

Q. When are you going to update the blog?
A. I’m doing so right now! Follow along!

Q. Does a quiet blog = a busy life?
A. Nope. A quiet blog = a dead home computer. It’s about 1995 in my house right now.

Q. When are your next medical appointments?
A. My next rheumatology appointment is Feb. 4 and I see my nephrologist on March 25. But I'm going to U-M for lab work on Monday, Jan. 14. This is to monitor the amount of protein in my urine and to see if the higher dosage of blood pressure medicine is making a difference. I'm very curious to see the results.

Q. How are you feeling?
A. In a word, encouraged. My energy level is the highest its been in a long time. I think the alternative therapies (acupressure, acupuncture) are contributing to my improved overall health. I am sleeping well and have learned the art of getting enough rest.

Q. Are you running?
A. No. I go for walks every day and have a new pedometer to track how much walking I do at work every day. But that's about all for now.

Q. Do you think you'll try another 5K?
A. Definitely. I haven't chosen one yet but will look for a race in June or July. That will give me enough time to prepare. The hard lesson from my September 5K was that I'm not the athlete I used to be, and running a 5K is fairly taxing on my body. So I want to make sure I train properly. I could use training partners so if anyone wants to run with me this spring, please let me know.

Q. Are there any National Kidney Foundation of Michigan events coming up?
A. There's a Kidney Walk in Grand Rapids on April 28 that I'm thinking about doing. I will be making a decision in the next month or so and, if I'm participating, I'll announce it on the blog.

Q. Why do you park in a driveway and drive in a parkway?
A. Dad? Is that you?