The New Transgender Book is Here!

Where's MY Book? A Guide for Transgender and Gender Non-Conforming Youth, Their Parents, & Everyone Else is now available in paperback on Amazon.com. The e-book version will follow along later this month.

How Steve would have loved this book! He met a number of my transgender patients - always befriending them and wanting to hear their stories. Many of them mourned his death at only 61.

How does this relate to kidney disease?

My earlier books were prompted by a need to chronicle my husband's experiences with end stage renal failure and home dialysis, using that ferry commute time from Seattle to Bainbridge Island to "process" what was going on in our complicated lives - and to educate others.

I always thought that dialysis - particularly in-Center hemodialysis - represented a state of singular vulnerability. For transgender clients, that vulnerability is increased. Many trans clients are forced to educate their health care providers about the delivery of "trans competent" care.

So, check it out. It's not boring, and it's rated "R for Realistic!"
Take care,
Linda Gromko, MD

Single Needle Dialysis: Something I Learned at the University of Indiana Home Dialysis Conference

I attended the University of Indiana's conference September 17-18, "Building a Comprehensive Home Dialysis Program: 'The Road Home.'" I gave a presentation entitled "Caring for the Partner."

During the patient panel, I learned about the Medisystems double-lumen needle. The exterior lumen is 14 French, and it houses a more narrow needle inside. It is FDA-cleared for use in the US, and is currently undergoing pilot testing in 5-6 centers. It is hoped the double-lumen needle will be more generally available in January 2016.

Panelist Sharon Bradley holds the double-lumen needle in the photo above. She says it's "the best thing since sliced bread." Sharon had a very calm way about describing her home dialysis experiences. She seemed to take everything in stride - and was very clear about how home hemodialysis had improved her quality of life. NxStage should be hiring her as a spokesperson.

No doubt, a single needle-stick would improve the experience for many!

Many thanks to University of Indiana's Mike Kraus MD for coordinating a great conference.

Take care,
Linda Gromko MD

Shifting Focus to a New Book...

As a family physician, I've had an amazing range of experiences. I've seen so many different people, with so many life circumstances.

For the past 17 years, I have been honored to serve the transgender community - with my patients ranging in age from 8 to 80!

I am currently writing, "Where's MY Book?" A Guide for Transgender and Gender Non-Conforming Youth, Their Parents, & Everyone Else.

Look for it around Halloween! I guarantee you, it won't be boring!

Take care,
Linda Gromko, MD
www.QueenAnneMedicalAssociates.com

Dori Schatell Introduces Practical New Tool for Dialysis Choices at 2015 ADC Conference

When my husband Steve was first diagnosed with End Stage Renal Failure, we attended the "Choices Class" at the NW Kidney Centers.

It was an honest representation of the options available, but Steve and I quickly labeled it the No Good Choices Class. Simply, the choices were 1) Kidney transplant (not an option in the short run), 2) Dialysis (in-Center Hemodialysis, Home Hemodialysis, and Home Peritoneal Dialysis), and 3) No treatment.

Steve quickly dubbed the last option as "Door Number Three," i.e., certain death in about two weeks with no treatment at all.

Medical Education Institute Staff at the Annual Dialysis Conference
in New Orleans, February 2015


Dori Schatell, Director of the Medical Education Institute and co-author of "Help! I Need Dialysis," introduced a new model for presenting dialysis choices at the ADC Conference. I think it has great merit.

As all dialysis choices can sound overwhelming at first, Dori devised a tool that helps kidney patients identify what's important to them, i.e., flexibility, NOT having medical responsibility, dietary freedom, etc.

Then, after completing an on-line personal survey - with immediate personal results, an individual is better able to identify what method of dialysis would best fit with their own priorities and lifestyle.

It focuses on a patient's life, rather than on a mix of choices that all sound burdensome at the outset.

I like the fact that this tool feels empowering. When a patient is feeling overwhelmed and out of control, this tool brings a bit of control back to the patient. Win/win!

Check this out at www.HomeDialysisCentral.org.

Linda Gromko, MD

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