I would like to thank DaVita Dialysis, the National Kidney Foundation, and all of you for giving me the opportunity to participate in this “Beyond Dialysis” event. I’m pleased to be here -- mainly because it got me out of the house today!
The name “Beyond Dialysis” resonates with me because that’s exactly what I want to do: get beyond dialysis. It’s a huge part of my life. I want to move forward, but I have to respect it every day. The first step in getting “beyond dialysis” is embracing dialysis. If you don’t do that, it will always be a roadblock. I want to turn the roadblock into a challenge, a step in another direction.
My name is David White. Everyone calls me Dave or “Mr. White” or “Sir”. Even when I was in my 20s people called me “sir”. It used to bother me, but now it doesn’t because I’m 51 years old and the staff at DaVita K Street call me “Mr. White” three times a week whether I like it or not.
I’m New York City born and raised, and have lived in the DC metro area since 1999. I currently live in Prince George’s County with my wife Hilva who moved here in 2002 to be with me. I’m in my fourth year of in-center hemodialysis and my second year of nocturnal dialysis.
In Fall 2009 I was diagnosed with Stage 5 renal failure along with anemia and malnutrition. I was 47 years old with no job and very sick to boot. I learned the hard way that I was not indestructible.
I relocated to DC from New York as a Big Law IT manager. Great job, great salary, great life. I did the math one year and realized that I was working an average of eight hours a day every day, weekends and holidays included. To make a long story short, I burned out and quit my job in the summer of 2005. I wanted to take a break, and take a break I did.
When I started looking for work again in 2007, it was recession time. I had no luck finding work and we went through all our savings paying rent and paying bills.
Flash forward to 2009, please. I was still looking for work. We moved from our pricey digs in the District to a smaller apartment in PG County. While adjusting to the new surroundings that summer, I noticed that I was getting weaker and getting short of breath more easily. I thought that this was because I had stopped working out. I was terribly wrong, yet more stubborn than ever. Years of not visiting the doctor regularly had taken its toll.
In October of 2009 I was admitted to GW Hospital, where three terrible weeks tried to make up for years of neglect. 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.
I did dialysis the first five or six times in the hospital, and the day after discharge I did my first in-center hemodialysis at Davita K Street in downtown Washington DC. I wrote the following about a year and a half ago regarding my first in-center hemo session:
***
I was not a pretty sight when I entered the K Street dialysis center in November of 2009 for my first in-center hemodialysis session. I was still very sick, but well enough to leave the hospital. EVERYONE thought I should stay a little longer, but after three weeks I just couldn’t stand another day in that place.
I was almost turned back by the center that day because my catheter (inserted about two weeks prior for dialysis purposes, then re-inserted because of excessive leakage) was still leaking blood. When the nurse practitioner attempted to send me back to the hospital, I said “no %$!@ way!” After a quick conference with the nephrologist on call that day, she relented and my treatment began.
The session started around 12:30PM, and ended around 5:00PM. I wasn’t scared and wasn’t really nervous; I just wanted to get the session over with so I could get home. It’s over three years later and, to this day, that sentiment rings true every time I walk through the dialysis center entrance.
Around 2:03PM I decided to stop watching the clock in the hope that the time would go faster. I watched some TV and closed my eyes and thought positive thoughts. When I thought at least 15 minutes had passed, I took a look at the clock. The %$@%^?# thing read 2:05.
Since that day a lot has changed and a lot of things have remained the same.
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 there have been some positive developments. I am stronger than ever (80 consecutive push-ups last week!). My cholesterol is now an impressive 177. Thanks to packing a “dialysis bag” three times a week I am now an excellent packer. I’m more determined 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.
***
[Life as a sick dialysis patient] So I settled into the unhappy routine of being a dialysis patient. Getting to and from dialysis was no small task. We no longer had an automobile, and the dialysis center was over six miles away. At the time, I was too weak to use mass transit, so I had to take a cab both ways; after a couple of months I was strong enough to use the Metro and bus system, but there were many days when I used travel difficulty as an excuse to miss my dialysis sessions. My attendance record in 2009 and early 2010 was terrible. I used the “3 strikes” rule to its worst, and I had to be re-hospitalized twice. While I thought that I was “getting with the program”, the truth is that I was as hard-headed as ever, if not more so.
One of the big turning points in my life with dialysis was a planning session at DaVita K Street with my wife and the DaVita staff. It was a serious wake-up call. Each person (social workers, dietitian, nurse practitioner, and my wife) went into specific details on how I was failing to live up to my end as a dialysis patient, and I finally saw the big picture. I was my own worst enemy, and I had to do better in all areas if I expected to make any progress. This was a bitter pill to swallow, but sometimes the truth hurts. Fortunately, DaVita provided me with an action plan that was chock full of tasks and deadlines and had my name all over it.
[Step One - no more missed sessions} Challenge Number One was to stop missing sessions. No more excuses! Even when I missed a session, I would make it up the next day. It had finally sunk in: missing dialysis appointments was a terrible idea. And wouldn’t you know it, I immediately began feeling better. Or at least I wasn’t feeling terrible all the time. After a few months, I was Joe Regular at the center.
One of my measures of how I was doing was how often I felt like crap. Moving from feeling terrible all the time to feeling terrible only part of the time was a huge improvement! Over time, I realized that my really bad days weren’t as bad as they used to be. Next step - on some occasions I actually felt good physically! The physical improvement combined with my positive mental attitude spurred me on to do more and more. 2010 was the year that I decided that if this was my life, I was going to be the best dialysis patient I could be!
[Step Two - Do more] By the time 2011 came around, I was feeling well enough to take the next step. After getting the OK from my doctors, I started exercising again. New Year’s Day was the first day I started exercising. Guess how many push-ups I was able to complete? Any guesses? Zero. I was shocked, but I was not dismayed. I did a few more exercises that day in my apartment and called it a day.
Oh yeah --- New Year’s Day 2011 was also my first day without a cigarette, and I haven’t had one since. I had smoked a half-pack to a pack a day for over 32 years. The patch did not work for me; I built up to quitting step-by-step, and it took about seven or eight tries, but everything came together at the same time that everything else in my life started coming back together.
One reason that I seized on exercise is that it was a positive choice that I could control. Ditto smoking.
[Smoking - gradual cold turkey]
[Exercise - two questions] Every morning I asked myself two questions: (1) Do you have time to exercise? The answer was usually yes, unless I had an appointment. (2) Are you physically able to exercise? If the answer was yes, I got in a workout, no questions asked. I tracked how often I exercised on my calendar, and also tracked particulars like how many push-ups I did or how far I ran. I set goals for myself constantly. Some goals I didn’t reach; others I reached or exceeded. I learned to really listen to my body, as it would tell me when to slow down a little (or when to stop completely). In late 2010 our apartment complex opened a pretty nice fitness center that was included as an amenity. Great timing! Even without the nice gym, I was determined to start exercising, though.
[Push-up particulars] A big help in my push-up project was a program called “100 push-ups” that I found on the Internet. I don’t want to bore you with any particulars here, but I would like to brag a little! On New Year’s Day 2011, I was able to complete zero pushups. Today I can easily do 50, and have done as many as 83 at one time. In 2011 I did over 8,500 pushups, and since then I average well over 1,000 push-ups every month. I can do more pushups now than I did when I was in the Army 30 years ago. A lot more.
[Running particulars] Running also became part of my exercise routine. As usual, I set my goals high and targeted a marathon run in 2012. But that hasn’t worked out as well as the push-up regimen did. I can, however, run a mile or two with bad intentions, and that isn’t bad for a guy who could barely walk a year or so earlier.
[Results -- ability to run; no more high blood pressure] There were visible results. My high blood pressure was a thing of the past! At one point I needed two high blood pressure medications -- one for my heart rate, and one for my pressure. I think it took about year for me to work my way off of both of them. And my limp was no more!
[Catching a train] I recall running to catch a train on the way to dialysis one day. Three amazing things happened: (1) I ran to catch the train; (2) I caught and boarded the train; and (3) I was breathing normally afterward! I remember that like it was yesterday.
[The 51 Stairs] My Metro train station is elevated. There are three ways to get to the train platform: the elevator, the escalator, and the stairs (51 stairs, to be exact). In my early dialysis days, I took the elevator whenever I could and couldn’t dream of taking the stairs, but as I got stronger the stairs stopped looking like an obstacle and started looking like a challenge. I accepted the challenge and started using the stairs whenever I could. As usual, it took months of hard work, but I can now run up and down the stairs just like all the other Metro riders do (or can).
[Diet and fluid] Controlling my diet and fluid intake took years. Scales and lab reports don’t lie, and I eventually got tired of seeing my poor results and tried harder to improve. Diet was and is a lot more frustrating than fluid. I sorely miss being able to drink as much fluid as I could handle, though. There are some high points, though: every month I get to eat an entire pizza! I currently go for a large chicken alfredo with gyro meat and banana peppers. It takes me two or three days to work through. And as long as I have it a couple of weeks away from lab time, my numbers are good. Moderation is more important than ever for dialysis patients.
[Slip-ups are OK] It’s tough to be good all the time! Slipping up is part of the human experience. Each slip-up meant that I was a step closer to the goal.
Move to nocturnal dialysis; joined MARC PAC] By the end of 2011 I was strong enough to want to do more. One day at the dialysis center I read one of Network 5’s Patient Advisory Committee leaflets and saw that new members were welcome (with approval, of course). I applied and was accepted, and started working with the group in the Fall of that year. Being a member of the Patient Advisory Committee has helped me learn a lot about issues that affect all dialysis patients and caregivers, and given me the opportunity to contribute to kidney disease awareness by advocating on a regular basis. I attend meetings and occasionally help as needed by sitting on focus groups and working on special projects. [LAN; this meeting]. As of a month or so ago I was selected to be a committee co-chair -- not too shabby for a guy who three years ago was one of the worst overall patients in the entire Network!
Around the same time that I joined the PAC, I switched from daytime dialysis to nocturnal dialysis in the hope of landing daytime employment. It’s a six-hour session as opposed to four hours. I enjoy having my days free for exercise or whatever. One interesting development is that I’ve started turning off the television for long periods during dialysis, because I find it easier to focus on my work (writing and studying) there than I do at home, where distractions are many. Now if I can figure out a way to get paid while I’m in the dialysis chair, I’ll have it made! But with all that said, I’m still tiring of hemo in general, and am looking at peritoneal dialysis as an alternative.
[What’s next?] That’s my story! What’s in my future? Hopefully, more MARC activities and advocacy. I can help and advocate for others by living a productive life. Definitely more studying! I plan to obtain Microsoft and Cisco professional certification by self-study, and then enroll in university to earn degrees in information technology and possibly music! After that, who knows, I might look into local political activities. Oh, and did I mention that I would like to return to the workforce? I have been working with Maryland’s Vocational Rehabilitation program since December in search of employment. And I hope that a kidney transplant is in my future as well. As of two months ago, I am on Georgetown Hospital’s transplant waiting list; with luck and a can-do attitude, I hope to get on Johns Hopkins’ waiting list as well. Other than that, I plan to maintain, maintain, and maintain. No more slipping back, and no more plateaus in general. As soon as I accomplish something, on to the next challenge.
[Closing] I’ve learned that it’s okay to ask for help when you need it. Many times the resources you need are there for the asking; you just have to ask! There’s no shame in admitting that you need help. There are good people and organizations out there that are willing and able to lend you a hand when you need it. If you don’t ask, how will they know? Speaking of good people and organizations, I would like to thank the people at DaVita K Street, my mom, and my wife Hilva for taking care of me when I could not take care of myself.
I’ve also learned that change is a constant and has to be addressed all the time. As soon as you think that your ducks are lined up perfectly, something will pop up to change things. A perfect example is in-center hemo. Just when things get routine, there’s a rule change, or a schedule change, or a people change. I know how I react to changes: very badly! I’ve learned to throw my first reaction out! Life is about change. Embrace it -- don’t let it control you. And remember that change can be good, and that you can be a positive agent of change.
In closing, I’d just like to wish all of you the best on your journeys. Don’t ever give up hope. Keep pushing beyond dialysis! Thank you.
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