Dave White’s Story (for the MARC Patient Engagement Learning and Action Network) -- February 26, 2013
I am 51 years old (that still freaks me a little), and happily married. I’ve lived in the DC metro area since 1999; I’m originally from Queens, New York. Go Giants!
I relocated to the District of Columbia as a stressed-out senior IT manager hoping for a more enjoyable, less stressful time of it. More enjoyable? Absolutely. Less stressful? Hah! I ended up walking away from it all near the end of 2005 at age 43. I wanted to take a break, and take a break I did.
By the time I was ready to return to work in 2007, I discovered that the impending recession had changed the employment landscape dramatically, and that I had, in effect, downsized myself. The next couple of years were a sobering lesson in humility, resourcefulness and commitment as my wife Hilva and I adjusted to our changing situation. Through all the changes, I was still practicing many of the bad habits that I had picked up during my adulthood (smoking and drinking, to be precise). 2008 was a tough year for us, but the worst was yet to come.
In 2009, after settling into our new digs (we moved from DC to Maryland in late ‘08) and while still looking for work as an IT manager, I started feeling progressively weaker. I thought that it was because I had stopped exercising (our old place had a fitness center), and that I’d be OK as soon as I started working out again. This was not the case. I lost my appetite and eventually became so weak that doing my own laundry became a challenge. (The laundry room was about a hundred feet away.) Years of not taking care of myself had caught up to me.
I am grateful that my story need take up only a few minutes of your time, because that means that I get to gloss over the part where I got really sick, got hospitalized, and my kidneys stopped functioning as they should -- all pretty much at the same time. In the hospital, I was diagnosed with Stage 5 renal failure, anemia and malnutrition. To make matters worse, I had no health insurance at the time. Though my situation was bleak, my wife, my family and the good Lord had my back during the scariest moments, and even in my darkest days I was determined (a) to survive and (b) to live. From that point, there was nowhere to go but up.
In 2010, my priority was survival. I applied for and received Medicare as well as secondary insurance. I started seeing a general practitioner and various specialists on a regular basis, and started eating right (and often) again. And, of course, I continued the dialysis treatments that I started in the hospital the previous year. My goal was to make it through the year without any serious setbacks, and this was accomplished (albeit with a couple more trips to the hospital).
In 2011, I focused on living! I started writing and blogging, and resumed my exercise regimen. (As if on cue, our apartment complex opened up a very nice fitness center on the premises in late 2010.) By the end of the year, I was healthy enough to entertain thoughts of returning to work, so to further that end I switched to nocturnal (overnight) dialysis so I could have my days available for work. I also applied for and was accepted as a member of MARC’s Patient Advisory Committee around this time. Being on the PAC has been an integral part of my recovery, as it connects me with people who are similarly situated health-wise and are very much involved in advocating for the health and welfare of ESRD patients in the metro DC region. My most empowering achievement of 2011 was being healthy enough to travel back home to visit with friends and family. I can still hear my mom telling me how much stronger I looked!
2012 got off to a tough start, as I lost my big sister Adrienne in January, but I persevered as she helped show me how. I continued my exercise regimen (over 15,000 push-ups in 2012!), and registered with Maryland’s Vocational Rehabilitation program to see if that might lead to a job (no luck yet, but my counselor and I have not given up). I restarted my IT studies by getting up to speed in Windows 7 and Windows 8, and purchased an online IT training library. Finally, in the fall of 2012 I began the kidney transplant evaluation process at Georgetown University Hospital, and as of this morning I am proud to report that I am on Georgetown’s kidney transplant waiting list!
For 2013 and beyond, my plan is simple: No more plateaus! Onward and upward. I am studying to become an Internet engineer. And, in the meantime, if you know of any company in need of a kick-ass IT manager, please keep me in mind -- I just may be the person for the job!
Dialysis is still uncomfortable and tedious, and I’m still upset that I was the “lucky winner” so to speak. And my condition still dictates many of my daily decisions. But I’m more determined than ever to succeed at every endeavor, am relentlessly optimistic about my condition and our future, and am taking steps every day to make that future happen. One of those steps is memorializing my experiences so I can learn from them and not make the same mistakes a second or third or fourth time. And I realize how lucky I am to be here! The least I can do is pay it forward to the best of my ability.
No more plateaus. Onward and upward!
