I'm now down to just two meds. I met with my rheumatologist yesterday, and together we decided that I should stop taking the plaquenil and see how it goes. Our thought process was:
Neither of us was convinced it was making a difference
The rheumatologist feels that the Rituxan treatments I've received will help me more than the plaquenil
My kidneys are my main concern, so we should focus on meds that directly help my kidneys
I recently met with my liver doctor and everything is stable there, and I'm going through the vaccination process for hepatitis A and hepatitis B. I'm two shots into the three-shot, six-month process. I'm also still waiting on dermatology to do the procedure on the two basal cell carcinoma spots -- although I'm in no rush for that to happen. The biopsy spots have healed and it's nice not having open wounds.
I'm pretty excited to be at this point, as I continue to feel the best I've felt in a long time. I'm getting my life back!
My latest medical adventure has nothing to do with my kidneys.
On May 30, I started noticing small bumps on my left wrist. They were hard to ignore, since they itched like crazy. Soon I had more bumps on my wrist, then more on my tricep, knee and ankle -- all on the left side. I tried to self treat at home for six days until I couldn't take the itching anymore and went to UM acute care.
The doctor said that this was a rash that I probably got from gardening--even though I told her that I haven't been doing any gardening. She prescribed a steroid cream, referred me to a dermatologist and sent me on my way.
On June 11, I was able to see the dermatologist. By this time, the rash had spread to my right side, including a very painful patch on my right hip. The itching was intense.
I was waiting to hear the dermatologist's rash diagnosis when she said:
"I'm so glad you came here today. You have a lot going on."
Huh?
Soon she was using liquid nitrogen on my face to treat some actinic keratosis (pre-cancerous) on my left cheek. Then she did shave biopsies on two places she said that she was concerned about: one on my right hand and one on my left upper arm, just above my elbow. Neither of these spots were near my rash or had anything to do with the rash, yet they had her full attention. On Friday -- 20 days after this dumb rash sent me searching for relief -- the dermatologist confirmed that the two spots were basal cell carcinoma skin cancer. We are now waiting for my biopsy wounds to heal before treatment. The doctor is recommending a basic surgical procedure called curettage and electrodesiccation. It all sounds pretty straightforward and I'm not too worried. I'm not exactly excited about the doctor digging into my hand and arm again, since I'm guessing these will be deeper than the shave biopsies, but I'll deal with it when the time comes. I now think my "dumb" rash is a pretty cool rash, since it led to the discovery of my skin cancer. The official rash diagnosis, by the way, was contact dermatitis. Ha. I basically got exposed to something that my body didn't like, hence the rash. The doctor looked at the steroid cream the acute care doctor had prescribed, shook her head and with wide eyes said, "That's not gonna be enough" -- delivered in the same tone and timing as the famous Jaws line -- when Martin Brody (Roy Scheider) said, "You're gonna need a bigger boat." It cracked me up.
Above -- what the first doctor prescribed.
This is my loot from the dermatologist. A bigger boat indeed! The rash is now nearly gone, thankfully.
What's posted above is a cut/paste from a recent billing statement. This is the cost breakdown from one of my Rituxan infusions. And I've had EIGHT so far -- four in July 2014 and four in February 2015.
My treatments were pre-approved by my insurance company, so my own portion of this bill is not nearly as obnoxious as the sticker price.
But seriously -- who can afford this stuff? Why is this drug so expensive? I just don't understand our health system.
I was talking to a friend about fibrils the other night, because hey, who doesn't love a good fibril conversation? I was trying to explain why I'm still sometimes uneasy about my fibrillary GN diagnosis, and of course I struggled to verbally make sense of things.
That's when I turned to my good friend Google and found this image:
Fibrillary GN fibrils are typically 15-30 nm.
Amyloid fibrils are typically 9-12 nm.
My fibrils are 9-10 nm.
This means nothing, of course. I don't think Mayo and UM are wrong. My sample didn't stain congo red.
I just think it's one piece of information that is unique to me and -- in the words of C + C Music Factory -- is a thing that makes me go hmmmm.
Here's a quick update. The text question was from my sister Danielle.
I am staying on the low phosphorus and low sodium diet. The UM nutritionist was awesome, though, and extremely helpful. I think we have a great plan and I have the clarity I need to make good choices. "Onward and upward," as my pops used to say.
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!]
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."
