2013 — Let My People Go “Home”

By Rich Berkowitz

Happy New Year!  I hope 2013 is off to a great start for everyone.  No, I’m not Moses.  My beard is nowhere near that long and I don’t wear long robes, nor do I talk to a Burnishing Bush or climb mountain tops.  But I have been doing home hemodialysis for seven years and am a living example it allows one to continue living a quality life without native kidneys.

For me, each new year presents an opportunity to reflect on the last – on the opportunities I have had, even the opportunities I’ve lost.  There were additional obstacles I have overcome, and some I’ve tripped over.  It was one more year I lived a good quality of life with kidney failure.  One more year many others on dialysis did not.  I’m one of the lucky ones.  I’m able to do the therapy that affords me the opportunity to live the life I want — family, involvement with community, travel and more.

As home dialyzors, I imagine it is the same for most of you as well.  Most of us had to overcome real barriers in order to get where we are today – doing our own research to learn about HHD, pushing our physicians and clinics to let us do HHD, and more.

There are people like us all across the country – who are still struggling to get access to HHD and far too many that have never even been told about HHD as an option.For example, a patient in Montana who was interested in finding out more about HHD after meeting a patient who was doing well on the therapy recently called after being told their unit did not offer HHD to Medicare patients.  Fortunately, this patient was able to find a different unit that would provide information on HHD – but this is just one of many examples of patients and families who reach out because they are at the end of their rope.)

It’s not just dialyzors who are frustrated either – physicians and dialysis nurses are frustrated because they have patients that would clearly benefit from HHD, but their clinics either are not certified to offer HHD or they are told their units do not offer HHD to Medicare patients.

You all know just as well as I do that this, unfortunately, is the reality for too many patients – it’s time to raise our voices so that more patients have access to HHD treatment.

The best way to make a difference is for dialyzors like us to speak out about our experiences and our wish for other patients to have the same opportunities – with this in mind, I encourage you to tell your story here…how long were you on dialysis before you learned about home hemo?… did your unit tell you about home hemo, or did you learn about it some other way?… when you asked for home hemo, how long did you have to wait (or how long have you been waiting) before you were scheduled to train?… did you have to change clinics to get HHD?…did you have to change physicians? 

 When you share your story, talk openly and honestly about where you have seen delays or barriers to access.  And, stay tuned here for other ways to reach out to Medicare to ask them to change their policies and allow better access to home hemo.

 

3 thoughts on “2013 — Let My People Go “Home”

  1. Let me be the first to post. Before I started dialysis my nephrologist explained to me the different options, from all of the dialysis modalities to transplant to doing nothing in January 2003. The dialysis modalities included dialysis, both in-center and home, and PD. After talking about it there was no doubt in my mind that home hemo was the way I wanted to go. He was also keen on it and was starting up a program at the outpatient center at the hospital.

    He anticipated it would take a couple months for the hospital attorneys to cross the “t’s” and dot the “I’s”. In the meantime we had scheduled an AVF placement. Strangely, I couldn’t wait as I had a quick downturn. I had to start with a catheter one week before my AVF surgery in February 2003. But it wasn’t going to be long as HHD was around the corner. As it turned out, the corner was very wide and very long. It kept dragging and dragging and dragging.

    I then got the word from the dialysis center I was going to that I was going to be their first HHD patient. My neph was going to work through them. Well, that didn’t happen either. In the meantime I had a heart attack driving home from dialysis. I believe it actually began over the long weekend. I ended up transferring to another center because my wife’s insurance changed.

    My neph tried to get the new center to adopt HHD as well. That didn’t happen. Finally in late June 2005 I got the word the hospital was finally going to approve it. I got as far as visiting the center, talked to the nurses and saw the machine. I even took a manual home to begin reading. Two days before I was to start training the rug was pulled from under me by a VP. I went into a deep funk. But between my neph and my complaints after he urged me on I finally started training in February 2006. It saved my life.

    The story goes on in that the hospital wouldn’t approve anybody after me and my neph had to start his own home only clinic in order to provide HHD to anybody else.

  2. I started dialysis on an emergency basis in January of 2011. At the time, I was informed only of three options: PD, in-center hemo and transplant. I immediately worked on getting listed for transplant and chose in-center hemo as what I thought was my stop-gap solution on the way to a quick living donor transplant. PD did not appeal to me for various reasons.

    I was actively listed for transplant in June of 2011. After I was actively listed, several individuals came forward to be tested as living donors but all were rejected by my transplant center. All this time, I continued with in-center hemo, having to adjust my work schedule and missing time with family and friends on the weekend due to my T-Th-S schedule. The PD nurse did come around once and asked me if I wanted to go on PD, which I again rejected. I was not informed of the option of home hemo but I knew from my personal research that my clinic did not offer home hemo unless I was willing to tear apart my house for the installation of a Fresenius BabyK machine, which I also rejected.

    Fast forward to September of 2011. I had finally run out of living donors and had to consent to the surgery to have a fistula created (prior to this, I had been receiving dialysis through a CVC). I did not want to have the in-center staff cannulate me, so I started my own personal research on home hemo options, where I found out about NxStage. I found a nearby clinic that provided NxStage training and contacted them directly and made the switch in October of 2011. There was no issue switching clinics from the perspective of my home hemo clinic, which welcomed me with open arms. My in-center clinic did try to create some artificial roadblocks, which I could see for what they were, which was just a way for them to retain me as I still had private insurance. I was adamant about the switch to the new modality and in November of 2011, I started three weeks of home hemo training.

    I have been home since Thanksgiving of 2011 and am still actively waiting on the transplant list, dual-listed at two centers. I feel that home hemo is the way that everyone who is willing and able should go. The artificial barriers that clinics and providers put up for patients are shameful.

  3. I had been on dialysis for 7 years, in-center and then PD. PD was failing for me. My doctor did not tell me about Home hemo dialysis with a portable nxstage machine. His clinic was not offering it at the time. I researched it on my own because my health was plummetinng. I transferred to another clinic to get the training. The other methods of dialysis stoppped working for me, hemo hemo is my last resort. So glad I found out about it.

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