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:

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.

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.
Discharged.

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. 

Cue the Debbie Downer Music

Official: I need to have biopsy #2.

More info soon.

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?