Home Dialysis, Vocational Rehabilitation, and Law School
I started in-center hemodialysis in September of 2013. At the time, I worked full time for a bank holding company, a company for which I had worked for nearly a decade. I was determined to continue working full time, and I did so for about seven months. I know that some new dialysis patients go on working without skipping a beat, but I couldn’t handle the demands of both in-center hemodialysis and a full-time job. Perhaps I pushed myself too hard in the months leading up to when I started dialysis, or perhaps I should have started dialysis sooner, or perhaps it was just a result of the way different people’s bodies respond differently to starting dialysis, or perhaps a combination of all three -- but I simply could not continue on working full time.
I resigned from my position at the bank in April 2014 and filed for Social Security Disability Income. Not having to work was a great relief and I immediately felt better, more well rested, more energetic, and was just generally happier. It is my opinion that some in the kidney care world naively push all patients universally to continue working to maintain a sense of “normalcy,” not taking into account that, for some, not working is the only way to maintain the normalcy of being able to wake up in the morning not feeling more exhausted than the night before.
My dialysis nurse, Jason, had spoken to me many times about home dialysis. I was always resistant and flat out told him and others many times that I simply was not interested. In retrospect, I honestly don’t know if I would have been able to fit it into my work schedule at the time anyway. My employer was only as flexible as the law required them to be, and so I suspect it would have not worked out well. I know that many others are fortunate enough to have employers that are understanding and bend over backwards to accommodate their employees’ health issues, but unfortunately mine was not one of them.
After quitting work and going on disability, I decided to give home dialysis a try. I started home hemodialysis with NxStage in July 2015 and have not looked back since. The gulf of difference between in-center dialysis and home hemodialysis was, for me, the difference between night and day. After about a year of daily home hemodialysis, I made the switch to nocturnal home hemodialysis. I was shocked to see that again the difference between daily and nocturnal hemodialysis was the difference between night and day. This is the mode of dialysis I still do today. I do 3-4 treatments per week, overnight, each treatment usually between 8-10 hours.
I wouldn’t say I feel normal because I frankly don’t know what normal feels like. I haven’t felt normal in a goodly number of years. But I can say unequivocally that I feel better than I have in likely upwards of ten years – and bear in mind that I have only been on dialysis for almost six years. I am an evangelist for home dialysis. I know that it isn’t for everyone, but it is a literal life-saver and I am truly indebted to those that developed this life-saving technology.
In early 2018, I found myself at the point where I wanted to return to work. The truth was, however, that I really did not have many marketable skills and my educational background was in a field that is anything but lucrative. I spoke with my Social Worker about programs to help train me to return to work, and she referred me to my state’s Vocational Rehabilitation (VR) Office.
I called the VR Office and set up an appointment. I was afraid that I would need to wait months on end for an appointment, but was happy to learn that I could come see a VR counselor the next week. Even so, I was very skeptical and honestly did not expect much to come of my appointment. Being the cynical person that I am, I presumed that my meeting would prove to be a big waste of time, but I decided to go anyway.
I went to the appointment and met the counselor that had been assigned to me, Tamara. She was very kind and helpful, and I could tell that she really loved to help people in tough situations. She took my application for VR services and told me that my being approved was essentially only a matter of making it to the top of the wait list.
When discussing my future employment plans, I really did not have much to say. I hadn’t thought about it that much, and I expected her to have ideas for me. She asked me, “If you could do anything you wanted to do, what would you do?”
I immediately said that I’d go to law school. It had always been a goal of mine that was just out of reach. I was shocked when she said that we could work together to make that happen.
I registered for the Law School Admissions Test (LSAT) and sat for the exam in June 2018. As soon as I received my score, I applied for admission to the University of Missouri Kansas City School of Law. The Fall 2018 starting class was already full, but I was accepted for admission to the Spring 2019 starting class. In the meantime, I received official notice in the mail that I had been approved for VR services and had already made it to the top of the waitlist.
I enrolled in classes and started my legal education in January 2019. The VR office covered my tuition, books, fees, every single dime charged by the University. They also purchased me a computer, all of the software I would need, and a printer. They truly have set me up for success.
If you are cynical, like me, and assume that your state’s VR office is the epitome of government inefficiency, perhaps you, too, can be proven wrong. Speak with your Social Worker or give the VR office a call directly. Check to see if you qualify for their services and what the process for approval is in your state. The trajectory of my life has changed dramatically because I did; maybe yours can, too.
All of that said, if there is one thing that I would like for you to take away from this blog post, it is how wonderful home dialysis is. Above all else, I hope my personal story about home dialysis inspires you to research it even more and to talk to your doctor about whether it is right for you. I cannot overstate or overemphasize what a difference it has made in my life. Without home dialysis, the VR services I am receiving would be worthless.
Home dialysis is a miracle of modern medicine and I would highly recommend you educate yourself, advocate for yourself, and take care of yourself the best way you know how.