Saturday, January 31, 2015

Learning from my Japan Visit: Part 2

It's amazing that I had the opportunity to go to Japan to talk about home dialysis. And it's particularly poignant because Steve spent years working in Japan - and had his health permitted, we would likely have traveled there together. I guess he really did take me there, at least indirectly!

Linda giving a bookstore talk, with
Steve's image on the PowerPoint slide
After speaking at Shizuoka, I traveled to Kyoto on the Shinkansen - the "Bullet Train." I saw the manicured Japanese countryside on my way to the University of Kyoto, where I was to speak to a group of medical students, residents, and nephrology fellows. They were impressed by the small size of the NxStage dialysis machine we used. They wanted to know how we kept Steve's spirits up. The answer? Weekly movies and a dinner out, courtesy of Access Bus!

After my talk, the four nephrology fellows (specialists-in-training) shown at left took me to the golden Kinkajui Temple shown behind us. We had a remarkable dinner - with me eating my first-ever raw fish.
Later, I was to have a most informative visit to the Sakai Rumi Clinic in Kobe. Dr. Rumi Sakai is passionate about dialysis; her daughter, Dr. Aya Kita jokes that "more dialysis" is her Mother's religion!

Dr. Sakai tells of having a patient
on dialysis for 40 years!
I mentioned in the previous blogpost that cadaver transplants are not accepted in Japan because of the Japanese observation that brain death occurs when the heart stops. Therefore, harvesting donor kidneys isn't done, except for a small number of living donors.

My observation is that when dialysis is what you do for ESRD, you have to do it very, very well!

For example, the blood flow rate in Japanese hemodialysis is much slower than in the United States. Surely, this must be more gentle on the dialysis access fistula!

In Dr. Sakai's clinic, patients have the option to do hemodialysis every other day: not the Monday, Wednesday, Friday regimen we do in in-Center dialysis. The three-day U.S. routine leaves patients with a long weekend to allow a patient to become volume overloaded, thereby increasing their risk of cardiac events during the break!

Above, Dr. Aya Kita explains another feature of the Sakai Rumi Clinic. Each numbered cubicle allows a patient to dialyze in private overnight! They are monitored by video cameras, blood pressure recordings, and moisture detectors - in the event of an accidental disconnection. Patients are able to shower after their dialysis and go right on to work. To me, this seems like a great solution for people who do NOT wish to dialyze at home. Plus, it would allow for maximal facility utilization!

I am a staunch advocate for the use of home dialysis. But the more options we have, the better!

We're in this together, and we can make it better!
Linda Gromko, MD

Visiting the Japanese Society of HHD Conference, Part 1

In February 2013, I gave two presentations at the Annual Dialysis Conference in Seattle, and sponsored by the University of Missouri.

After hearing my presentation on supporting the caregiver (care partner) in Home Hemodialysis, Dr. Ituko Masakane from Yamagata University asked me if I'd like to come to Japan.

Japan! A lifelong dream. With an invitation formalized by Dr. Noriko Mori of the Department of Nephrology of Shizuoka General Hospital, I left Seattle on April 17, 2014. My topic: "Home Hemodialysis: The Best Gift I Could Give My Husband."

Dr. Masakane, Dr. Gromko, and Dr. Mori after Linda's Talk

What's it like to give a talk in Japan? Considering I speak about three phrases in Japanese - and we weren't planning on formal translation, it could have been rugged! But Dr. Mori was kind enough to translate my slides into Japanese. My audience was very kind and respectful.

Here's the poster that advertised the conference I attended in Shizuoka.
We agreed that my late husband Steve, with his Metabolic Syndrome and Diabetic Renal Failure, would have been nicknamed, "Mr. Metabolic Syndrome." In Japanese, of course, that would have been "Metabol-San."

My guides, Keiko and Masaki
Japan's ESRD culture is quite different from what I know in the US. For example, kidney transplantation is extremely rare. With a philosophical stance that does not allow for brain death as a criterion for organ harvesting, transplants are essentially limited to related living donors, not cadaver donors.

For this reason, Japan leads the world in its proportion of hemodialysis. Home hemodialysis, however, occurs much less commonly than in America. There are approximately 400 patients on HHD in the entire country. This is where personal stories - like the story of helping Steve with dialysis at home - may be of help.

Models of sharp and blunt needles -
larger than life, but pretty much how Steve saw them!

It occurred to me that Steve had been told by a nephrologist, "Dialysis is what you do until you get a kidney."

In Japan, dialysis is most likely what you do with End Stage Real Failure, period. From what I saw, though, there are some innovative approaches with tremendous merit.

Check out the next blog post for my experience at the University of Kyoto, and - best of all - my visit to the Sakai Rumi Clinic in Kobe.

We're in this together - and we can make it better!
Linda Gromko, MD