Restoring my faith

By Anna Bennett

I came home last night to two letters.  One letter made me snort, and one letter made me smile.

Snort:  A letter Fedexed (they got my address wrong, life is in the details people) from DaVita Columbia, telling me that they have been temporarily assigned my care and that they do not support solo home hemo, but would gladly accept me in-center or would be willing to help me find another unit (I've found three in the past few days - how hard have they been looking?).  I just need to come in and sign a few forms and be seen by their MD ASAP.  Signed by the Medical Director, the Social Worker and the FA.  It's great, now I know how to spell their names properly.  Those names are: 

Dr. Dean Priddy, HHD Medical Director
Ashley McGill, LMSW
Mary Norton, Facility Administrator

This morning, I replied to their letter.  The substantive paragraph reads:

My only recourse in this situation is fiscal.  Risking the consequence of being called non-compliant, I refuse to consent to the sub-optimal care plan that is being forced upon me by your staff.  In no way should Columbia Dialysis be allowed to bill my insurance company for not providing medical care - not only has my interaction with your practice been insulting, but no medical care has been administered.  I will go so far as to say that my interaction with your practice has caused my health to deteriorate due to the stress added to an already stressful medical condition.

Oh, and the smile was elicited from the other letter from the NYS Department of Health, assuring me that they have received my Freedom of Information Act request for any information pertaining to the site visits to DaVita Columbia and DaVita Lifecare, and have forwarded my request to the appropriate parties.  It will be like a sick and twisted Christmas for me when I see those reports.  Ultimately, the patients being served by the clinics will profit by the clean up.  State Inspections are good for the patient.  In my case, I was lost in an administrative nightmare, although terrifying, I will wake up one morning and this will all be over.

I have had the pleasure of speaking with some very professional dialysis units over the past few weeks.  Some that support solo home hemo, and others that do not.  In each case, I have been met with respect and compassion.  That is what is restoring my faith in the industry.  Bill has an amazing relationship with the Northwest Kidney Centers, and they stand as a beacon of progress.  The thought of pulling up stakes and moving to Seattle was very appealing, not practical, but appealing. 

Closer to home, The Rubin Dialysis Center in NY State is doing amazing work with their home hemo program.  I had a great conversation with their Trainer.  She was encouraging, well spoken, well read and really on the ball.

I also had a great conversation with the Home Trainer at SUNY Downstate Dialysis Center in Brooklyn. They use Fresinius machines, and they do not support solo home hemo, but she was insightful and compassionate. 

Here in Manhattan, we have The Rogosin Institute - they do not currently have a NxStage program, but their nurses were informative, professional and again very well read.

There have been some amazing conversations  with the unit that I hope will be my new home unit.  Also in NYC, all of my interactions with them have been refreshing, navigating the waters of insurance (I have private insurance), co-pay, and all the other administrative hassles that come with managing a chronic illness.

On that note, I am going on vacation tomorrow.  When I return, I will be going to the new unit, signing on the dotted line, and hoping for the best.  All of this will have transpired between 8/15 and 9/10, well within the limits of my monthly clinic visits.  All without an interruption of my dialysis schedule, and aside from a lot of fretting, more tears that I care to admit to, and more support than I could ever acknowledge publicly, this nightmare will have come to an end. 

Hopefully, my situation will have started a dialogue on optimum dialysis and solo home hemo dialysis.  This ground swell needs to come from the patients dialyzors.  As DaVita Columbia has proven, these units are entrenched in their methodology, a methodology designed in 1973 modeled for government reimbursement.  This needs to change, and we need to demand change.  You'll feel better. I do.

Comments

[Mel Darnley]

Phew what a journey! Glad you can now look to the future with some renewed hope and clarity. Also glad that you have been able to find some Units with compassionate, intelligent people in charge.
Have a great holiday. You deserve it:~)
Cheers
Melissa