Friday, March 28, 2014

There's No Place Like Home (Dialysis)

I'm in Oak Brook, Ill., tonight, attending a public seminar sponsored by The Renal Network called "On the Road to Home: Home Dialysis Treatment Options." The lime green ribbon attached to my name tag reads "Home Team," which either means that my own home dialysis story is well known since I'm a representative of the Renal Network's Network 10, or that I'm expected to clean up after everyone leaves the Drury Lane banquet room.

The annual event, which coincides with National Kidney Month and includes a free meal, was well attended (Duh!) by dialysis patients, caregivers, medical and equipment representatives and those who simply desired more information about their options after the dreaded diagnosis of kidney failure has been delivered.

The Network offered five key questions a renal patient should ask her or his physician when the subject of dialysis finally arrives:

• What dialysis therapy may offer me the best chance of living a normal life?

• What dialysis treatment would allow me the best chance of survival?

• What treatment would allow me to have better nutritional status?

• What dialysis treatment option would YOU choose if you were faced with kidney disease?

David Rush, aka Young Bo$$, a true crowd pleaser
• How can I learn more about home dialysis?

One great way to learn more is simply to attend sessions like these. The evening's featured speaker was my man David Rush, aka Young Bo$$, a charismatic, very gregarious hip-hop star whose career literally was rescued by home hemodialysis.

Rush encouraged everyone in the quiet, attentive crowd to get on their feet and whoop and holler like Justin Bieber fanatics so he could get a great selfie shot for his Instagram account. But he's deserving of a JK blog post of his very own, and I will devote major space to his remarkable story in the very near future. Promise.

The night featured other first-person testimonials from dialysis patients who wanted to share how much home treatments – be it be traditional or short Home Hemodialysis or Peritoneal Dialysis (PD), my former godsend of choice – resurrected their lives.

One, Cary Bolton, an O'Hare Airport employee who says conventional in-clinic dialysis left him so drained that he would fall asleep at stoplights on the way to work, claims that after he switched to PD he was part of "the H Factor: I'm healthier, I'm happier and I'm a home patient."

Also in attendance was my inspiring fellow Renal Network representative Lana Schmidt, who has done such an effective job of spreading the good news about home hemo in southern Illinois that her story was featured on radio, a newspaper feature and in a TV news segment around her home. You can read the text of her TV debut here.

Sadly, though, this was my first major kidney-related event without my friend Richard Berkowitz, the irascible, devoted champion of the home dialysis movement who died unexpectedly in January. (You can read my JK blog post about him right here.)

Even Young Bo$$ acknowledged his absence, having met Berkowitz at a previous conference. "That's somethin' about Rich, huh?" he asked. I had to agree.

Rich is no longer here, but I felt his presence tonight. I think he'll inhabit every room where home dialysis therapies is the subject of choice for many years to come. I fully expected to see him when I entered the banquet hall, then had to remind myself that I wouldn't.

What an incredible impact he made. Guess home is where his heart was.

Thursday, March 20, 2014

Oh, Tie a Bright Green Ribbon/'Round Your Old Kid-neeeey

If you're reading this blog, I'll betcha a dollar to a doughnut (better yet, a celery stalk – doughnuts are dangerous to diabetics and many kidney patients) you already know that March is National Kidney Month.

The official NxStage Green Ribbon
What you probably don't know – because this is the first time it's ever occurred – is that today, March 20, is also National Home Hemodialysis Day. Whoopee!

There are no parades planned for my community (I checked), but it's a day of celebration for many of the 430,000 Americans who are on dialysis nevertheless.

One could easily dismiss this as a slick marketing ploy by NxStage, the Massachusetts-based company that, from what I understand, makes a pretty mean home hemo machine, the NxStage System One.

(I did not opt for hemodialysis, where your blood essentially is sucked out of your body, cleaned and scrubbed, then put back in, when my time came to choose a dialysis option. Even though I've been a post-transplant diabetic for more than two years, I am just now getting on speaking terms with the idea of sticking myself with needles every day.)

However, a lot of dialysis patients I've heard talk about home hemo rave about the treatment. It allows them much greater flexibility and self-determination in how they manage their renal condition, as well as such therapeutic benefits as improved energy, better appetite and less stress on the heart. You can see a number of testimonials yourself on the NxStage website, in a series of video clips that look suspiciously like they were recorded at the Home Dialyzors United conference I attended last year in Orlando.

(No home hemo for me. No camera time. Rats.)

To commemorate the day, NxStage has made available green ribbons to be worn today by those who support the home dialysis option. Obviously it's too late to get an "official" ribbon from the company now, but I'm sure any green ribbon folded and worn with pride will get the point across. I'll certainly be sporting mine today.

After all, anything that can keep kidney patients from traveling back and forth to a dialysis clinic two to four times a week for hours at a time and allow them to remain in the comfort of their homes instead can only be called one thing:

A blessing.