Please Watch This Video

NephCure Kidney International, in partnership with the National Kidney Foundation, has just released a new video -- and it resonated with me. I'm sharing the link here in hopes that others will watch the video and learn more about the Nephrotic Syndrome journey.

As NephCure CEO Mark Stone said in his email release of the video, Nephrotic Syndrome can be difficult for patients and caregivers to explain, and difficult for friends and family to understand.

I know that I struggle to explain how I'm feeling about this disease; perhaps the video will do a better job than I do.

Thanks for watching. 

  

Shingles > Fibrillary Glomerulonephritis

So a funny thing happened when I had shingles a few weeks ago.

People understood. Everyone had heard of shingles. Most people I told had either had shingles themselves, or had a close family member who once did so. That's not surprising, as one in three people will have shingles at some point in their lives. (Get ready. And yes, it sucks.)

I went to urgent care within 48 hours of the outbreak, so I was given a seven-day course of an anti-viral medication called valacyclovir, and the drug worked well for me.

What struck me during this episode was that people understood how I was feeling, and that never happens with my kidney disease or liver disease. Those are invisible and a bit harder for people to understand. "But you look OK," people will say. "I always forget," others tell me.

With shingles, people looked at me like someone died. "Oh I'm so sorry."

There was a small patch of shingles on my back, and the pain was a combination of burning fire and needle poking. But people heard, and would talk to me about it, and share their own personal shingles story. Fibrillary glomerulonephritis makes me feel isolated and alone. Shingles made me feel like I got invited to a party where all of the cool kids were. I was in the club.

It may sound silly, but having shingles wasn't that bad. There was a treatment available. My case was mild and didn't spread. And once the nerves in my back calmed down and the blisters crusted over, well then the healing began.

There was a beginning, and there was an end.

It's true.

Shingles > Fibrillary Glomerulonephritis.

And Then There Were Two

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

That means I now take:

1. Lisinopril 40 mg (blood pressure)
2. Spironolactone 25 mg (diuretic)

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!

I feel like an Olympian.

 With my Mom at Whistler, British Columbia

Best. Rash. Ever.

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.

The Cost of One Rituxan Treatment

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.

Fibrils

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.

[Obscure '90s music reference free of charge.]

My Kidneys are Tweeting

My kidneys may not filter so well, but they can Tweet.

Follow me on Twitter - @giffyskidneys