Dumped: The Saga Continues

by Anna Bennett

It is amazing, humbling and heartening the way that the "Troops" have rallied after reading about my "plight". I appreciate all of your well wishes, support and even the criticism.  I generally quip to my friends that I am redefining the term "Pyrrhic Victory", because I know that I am the person who is losing in this battle. Ironically, I am the healthiest that I have ever been since my kidneys failed.  This is thanks to following my care plan of high dose daily dialysis via NxStage, alone at home.  So, in all of this, I can say that at least I have my health.  Now, the fight is to maintain my health.

My outlook is that when we are diagnosed with CKD-5, we are handed a death sentence.  I know that in all probability, barring a sudden traumatic accident, my death certificate will read ESRD or complications secondary to ESRD.  That is humbling to know how you are going to die.  The next question is when am I going to die?  I made the commitment to make that date as far away as possible.  I was put on the UNOS list before I started dialysis, I maintain my meds and try to live the best possible lifestyle that would optimize my health.  I am doing my part.  Starting on NxStage for me was like going from being on death row to being on probation.  Home hemo gives me freedom and health that I could never experience in-center.

My ex-nephrologist of 7 years, who also happens to be the medical director of Davita LifeCare was complicit in maintaining my optimal health.  While I suffered silently in center with access issues, poorly trained, overworked staff, and declining health, he made the forward thinking decision that I could be trained on NxStage, alone.  After I was trained and dialyzing, there was no looking back.  I regained my stamina, and the spark that had been extinguished during my 10 months in-center.  Then, on August 15th, the rug was pulled out from under my feet.

DaVita LifeCare was the subject of an inspection by The New York State Department of Health.  In addition to the small Home Hemo program, they are a 30 chair urban dialysis center.  And as I have alluded in my previous posts, like Lufkin, DaVita LifeCare temporarily "voluntarily" shut it's doors as a result of the State Inspection.  However, for the home hemo program this closure was not to be temporary.  I was dumped on the nearest DaVita Unit that has a home hemo program, DaVita Columbia University, and they do not support solo home hemo.

Which leads to my plight.  I am being told that I need to sacrifice my current health and come in center.  I believe that this is the ignorant, uninformed easiest solution for the DaVita Columbia Dialysis factory to make.  I have been put in the position of trying to find a solution.  I am looking for a dialysis unit that will have me as a solo dialyzor.

People who love me have simply advised that I should think of me first and just lie. Bring in a partner to train, and then go back to living my life quietly waiting for a transplant.  I have plenty of volunteer liars to assist me in this.  But I won't do that.  My ex-nephrologist took a stand and encouraged and celebrated me being able to care for myself.  Surely I will be able to find another.  It will be at a personal sacrifice, of time and convenience, but my health is worth that.

Once again, my situation is proving my biggest beef with the industry. The dialysis is the easy part.  Really, it is now second nature for me to hookup and clean my blood in a safe and therapeutic way, something that I have done alone for every treatment since my training (with the exception of my first home visit from my nurse, and the time that I dialyzed in front of a reporter and photographer).  It is the bureaucracy, (in this case bogus) regulations and delivery/supply issues that make this such a burden.  What a shame.  In my next few posts, I am going to use examples from my situation to highlight what I believe to be critical failures in dialysis today.

Also this week, I am going on a planned vacation.  Something that would not be able to do were I an incenter patient.

I think that my only victory in this will be education.  Teaching nephrologists that NxStage is new technology that is making home hemo accessible to the right candidates, people who can take control of their lives and be healthier.  FAs and other In-center administrators are anti- home hemo, because it robs their units of healthy compliant patients who are easy on their staff, and whose numbers keep their monthlies within range.  The biggest fear of a Unit Administrator (after sudden State Inspection) is having a unit filled with non-compliant, difficult patients.  But I say that is the way that the industry should be. Let the professionals (and I use that term loosely) take care of the sickest among us, teach the rest to take care of themselves.

Qualified people are healthier and safer when they are at home on High Dose Dialysis, and anyone who is capable should be doing just that. So, for my sake, spread the word, question your centers and your health care team, and together, let's force the dialysis industry to rethink their definition of profit.  The profit should be measured in human health, not DaVita's latest stock offering.

Comments

[Rich Berkowitz]

Anna, if you've been notified by Bill, or following some of the discussions on the other internet sites, you'd know you're not alone. In fact, it's been requested that you register pronto on the NxStage_Users group. I also want to talk to you directly to let you know some of the things we're planning.

Anna, you're not dialyzing alone anymore!