Hey Jan Brady - My Liver Knows How You Feel

Lost in my medical story is that I also have liver disease. This has been confirmed by test results, scans and a liver biopsy. It's serious, yet I rarely think about my liver.

The only change I've made due to my liver disease is that I gave up alcohol. I had one drink in 2014 -- a Stella Artois on my birthday. 

Other than that, everything is about my kidneys and trying to stop the progression of fibrillary glomerulonephritis. The frequent tests and office visits. The expensive and experimental chemotherapy treatments. The special diets. It's kidneys, kidneys, kidneys all of the time.

My liver? I don't really give it much thought.

That changed a few weeks ago, when I saw the liver specialist at UM. During her warning that I could be headed toward cirrhosis, she gave me a pep talk about my diet.

"This is really simple," she said. "Only eat whole grains, and things like whole wheat pasta and brown rice instead of white rice."

I laughed and shook my head, knowing that my kidney doctor has me on a low phosphorus diet that has me avoiding all whole grains, wheat pasta and brown rice. The diet is completely counter-intuitive, but it's pretty standard for where I'm at with my kidney disease.

That's when I said that I wasn't going to deviate from what my kidney doctor has ordered.

And that's when I thought of The Brady Bunch - and how my kidneys are Marcia Brady.   

Jan Brady once lost her mind about "Marcia, Marcia, Marcia!"



If my liver could talk, I know it would whine, "Kidneys, kidneys, kidneys. I'm tired of being in the kidneys' shadow all of the time."

 


So what's next? I've been referred to a UM dietitian who will try to create a diet plan that will work for my kidneys and my liver. I go on March 4 and I'm actually pretty excited about the appointment.

[Big thanks to Rachel for the awesome drawing featured in this post!]

"No Pain. No Pain. No Pain." - Rocky Balboa

 
I've noticed something about myself lately. I'm terrible at drawing analogies. Yet despite my known deficiency in this area, I keep trying to make things analogous. I will blurt out "that's just like this situation blah-blah-blah" and before I can finish my sentence even I know that I'm not making sense.

This may be one of those times.

I had a kidney appointment this week, and I learned that the four Rituxan treatments from July are, in fact, making a difference. In particular, my serum albumin has improved and my protein spillage has decreased. My kidney doctor feels very positive about my progress.

I walked out of my appointment and immediately thought: I am Rocky Balboa, and I just cut Ivan Drago.

I'm still in the ring and still fighting the powerful bully. And the effort is working. (Anyone who is not a child of the 80s and doesn't know Rocky IV by heart, check out the video link above.)

I just heard the bell for Round Two. I have four more infusions scheduled, beginning in late January. These are weekly infusions that will kick my butt but will hopefully help me ultimately defeat fibrillary glomerulonephritis (that's Ivan Drago for those of you unable to follow my spot-on analogy!).

As I mentally prepare for another round of Rituxan, I keep thinking to myself: "No pain. No pain. No pain."

Let's do this!

Did It Work?

Did my Rituxan treatments work?

Here's what I told my kidney doctor on Sept. 29:

1. In general, I feel like I have a bit more energy.
2. The swelling in my legs, ankles and face is reduced.
3. I'm noticing less foam when I do my business.

All of these positive signs began about the second week of September -- so 10 weeks after treatment began.

My doctor then ordered blood work and a 24-hour urine test, and those results are back.

Positive news from blood work:
My serum albumin has increased. This is good! Albumin is important for tissue growth and healing. It was 3.3 before the treatments and is 3.7 now. (The target for adults with CKD is 4.0.)

Positive news from 24-hour urine:
The target range for protein in urine is 0.00 - 0.15 grams/24 hours.
My previous 24-hour urine, taken at Mayo Clinic last fall, found 3.93 grams/24 hours.
This week, I had 2.48 grams/24 hours.

Less protein spillage is good! Other than that, though, I can't draw many conclusions without talking to my doctor. I've stopped trying to figure out these tests results on my own (I was an English major for gosh sakes) -- and I don't have any psychic powers.

My rule of thumb is that if the UM Hospital # doesn't come up on my cell phone, then all is good and I should just keep rolling with things.

So I roll.   

Done!

1. 2. 3. 4. DONE.

Infusion #3 took 5.5 hours and overall went well. My IV backed up a few times, which didn't cause a problem, although it was unsettling to look at the line and see blood. I didn't have a reaction during the treatment, and I was awake enough toward the end that I watched a movie with my nephew. It was good to laugh! Post-infusion was much the same: a red, puffy face and a headache. This time I needed two days home afterward, as I was completely exhausted.

Infusion #4 took 5.5 hours and got off to a rocky start when the nurse couldn't get the IV line started. There were two failed and painful attempts before a different nurse intervened. Ouch. Once the line started there were no issues. I didn't have a headache this time (yeah!) but did get the red/flushed face.

Overall, I'm glad the treatments are done. I'm bruised and tired but completely relieved to have this step completed.

Two Down

So far, so good. I've had two Rituxan infusions and things are going well.

Infusion #1 took 7.5 hours. I had an allergic reaction about one hour into the treatment when my ears started itching like crazy. The nurses stopped the drip, gave me more benadryl, called my doc and waited about 30 minutes before restarting the treatment. Later that night I had a bad headache and my face was red; both lasted about 36 hours. Fatigue was a post-treatment issue. I stayed home the day after my treatment but then went back to work the following day. I was very tired but able to work, and that made me happy.

Infusion #2 took 6 hours and I didn't have a reaction during the treatment. Yes!  Treatment was done about 24 hours ago. I have a headache, my face is red and puffy, and I am exhausted. Benadryl is my friend. I feel much more tired this week than I was last week. But overall I'm doing well. The nurses at the UM Infusion Center are excellent and I get great care there.

A Chance

My insurance company has approved the treatment plan recommended by the Mayo Clinic and the University of Michigan. I will have infusions of Rituxan (Rituximab) on July 8, July 15, July 22 and July 29. Rituxan is typically used to treat lymphoma and leukemia, but recently it has shown some promise in treating other diseases. Getting this approved was no easy task, and I'm extremely grateful to my nephrology team at UM for working so hard on my behalf. Go Blue!

The first infusion on July 8 is supposed to take eight hours; the next three infusions are predicted to take five hours each. Treatments will be at the UM Infusion Center at East Medical Campus.

The above was easy to explain. More difficult is how I'm feeling about all of this. First was shock that treatment was actually approved. Then some excitement entered but was quickly tempered by how uneasy I'm feeling about pumping a drug into my body. Most of all, though, I have no clue if this will work. It's a chance -- but that's all.

Another study has just been published. Its authors call this "the largest case series to date using rituximab for fibrillary GN." There were 12 fibrillary GN patients treated with rituximab, and the treatment stopped progression of the disease in 4 cases. That may seem like a low success rate, but it has me feeling a bit like Lloyd Christmas in Dumb & Dumber ("So you're telling me there's a chance").

Thankfully, 4 out of 12 beats one in a million. Besides, if we were talking baseball here, those study results would have a .333 batting average and would be going to the Hall of Fame. I'll take my chances.

I'm ready for July. Batter up!

Lab Recap

I've been thinking about sports a lot lately. My apologies in advance. 

*****
Giffy turned in a career-high protein-creatinine urine ratio this week, scoring a 3.40. This impressive personal best topped her previous high of 2.91 in March 2013 and is huge jump from 1.68 in October 2013.

The normal range for this test is 0.01-0.18, so Giffy is losing the battle with proteinuria -- excess serum proteins found in the urine. The stat sheet tells the story:

Also making its first appearance: an elevated phosphorus level. 

Insurance hasn't ruled on the Rituximab treatment yet, so Giffy's kidneys continue to spill protein at an alarming rate. When interviewed after her test results came in, she said:

"You know, I'm just happy to be here and I hope I can help the ballclub. I just want to give it my best shot and good Lord willing, things'll work out. Gotta play 'em one day at a time."

Or something like that.