Motivational

DaVita Patient, DeeAnn, Shares Her Story and Her Insights

A Letter from DeeAnn, March 2004

My name is DeeAnn and I dialyze at DaVita's University Dialysis Unit in Minneapolis, Minnesota. I have been on dialysis since June of 1999 (with 15 months off for good behavior—actually, my sister donated her kidney, but that's a whole other article). The road has not been an easy one, but I hope some of the insights I've gained and strategies I've used over the course of my journey may be helpful to others who find themselves on the same path.

It doesn't take long being on dialysis to realize that one's daily reality consists of periodically not feeling well, frequently being fatigued, itching a lot (in my case), occasionally being puffy, getting wacky lab results…the list goes on and on. Having weathered these physiological challenges for some time, however, I would like to suggest that it is the mental and emotional demands of our situation that pose the greatest challenge for the dialysis patient. My unit facilitator asked me to write this article because she thought I seemed to be handling dialysis fairly well. After thinking about it, I have come to the conclusion that as a dialysis patient, I need to spend just as much time maintaining my mental health as I do in following the physical regime of medications, diet and dialysis. While our doctors, nurses, dieticians and PCTs are all there to assist us in maintaining our physical condition, we dialysis patients usually have to take the lead in maintaining our own mental health.*

This is no easy task, especially since so much of our time and energy is consumed with the demands of being on dialysis. Having weathered more than a few health crises, infections, surgeries and the loss of my sister's donated kidney, I have found that the episodes of depression and lethargy I've experienced have affected my quality of life far more than the demands and limitations of life on dialysis. Thoughts like, “It's not fair,” “Life sucks,” “Why me?” are a daily—and understandable—part of our life. The good news? Such thoughts do not have to dominate our outlook and life on dialysis can be good. In fact, the whole reason we go through with dialysis is to live—so please, make the most of it!

I found that waiting for a kidney (something I feel I'm getting really good at!) can subtly lure the dialysis patient into a mindset of waiting for life to begin, of putting life on hold for the three to five years we can expect to be on the list. My close calls helped me decide not to wait, but to live life as fully as possible now. Yes, even while I'm on dialysis.

To be sure, there are limitations while being on dialysis. As a passionate German instructor, I am very disappointed that the limitations of Medicare and my own insurance make trips to Europe out of the question for the moment. Even domestic travel is difficult and takes more than a little advanced planning.** Travel is, however, very important to me and helps me to feel normal, so I make it a priority. My sister and I have begun to make what we call “the annual pilgrimage” to Las Vegas. We are not big gamblers, but we cherish the time we can spend together away from the demands of everyday life, and Vegas has very helpful dialysis units and g-r-e-a-t deals! I have also become a big fan of the “mini-vacation” and have begun exploring my native state of Minnesota for short, weekend getaways that don't involve having to plan for dialysis at another unit. A weekend biking and kayaking trip through the Minnesota bluff country and a murder-mystery weekend at a quaint bed-and-breakfast are just two trips I have taken while on dialysis and will fondly remember for the rest of my life.

I also decided I was not going to risk missing out by waiting to follow a lifelong passion of mine that I had put on hold for many years: owning my own horse. There had always been very good reasons for not making my passion a priority: I needed to finish college, I needed to find a better paying job, I needed to finish graduate school, etc. Dialysis was an even better excuse not to do something (no time, no energy, no money). In retrospect, however, it has been following my passion that has had the most positive effect on my quality of life while on dialysis.

Despite the fact I can't spend as much time with my horse as I would like (then again, I don't know anyone at my 80+ horse facility who does!), that I have to modify my riding sometimes due to some physical limitations, that I've had to make some sacrifices to afford it (again, so do most the other horse owners I know!), Loki, my 8 year-old Norwegian Fjord horse, has enriched my life in ways I hadn't imagined when I decided to get him. Not only do I feel better physically—riding and training a 1,200-pound animal is much more physically demanding than you would guess from watching horses on TV!—but the responsibility of getting out to the farm to work with Loki, even on days when I would rather sit around and watch TV, gives me a feeling of accomplishment, gets me out into the fresh air and gets me interacting with others—All things critical to my mental health!

Following your passions doesn't have to be owning a horse, of course; but do find something—a hobby, an interest, involvement with church or community service—that you can invest time and energy in and enjoy the rewards you will reap.

Seeking normalcy in my lifestyle and following a heart-felt passion have been key to maintaining a positive outlook, but they are only part of the equation. Just as important, and a heck of a lot more mundane, is regularly taking personal stock of my mental health, and—the harder part—doing something about it when necessary.

Depression had been a part of my life long before dialysis, and perhaps because of this I learned long ago that I need to: faithfully take my medication, talk to people (sometimes professionals, sometimes friends, always my family), do some things I don't feel like doing (like housework), not do some things I want to do (like spending all day in front of the TV) and to nurture personal and spiritual relationships. I don't always succeed and sometimes the “life sucks” feelings return. Funny thing, though—people without the challenges of dialysis feel that way sometimes, too. Be kind to yourself, forgive yourself when you've slipped into poor mental habits and try again. Life is precious—don't wait to start living it!

*Talk to your social worker, doctor or other members of your dialysis team

Feeling blue is to be expected when you're on dialysis. Your social worker is a trained professional who can help with emotional and coping issues. Your doctor can also help if your depression is due to a physical problem. Please tell your dialysis team how you're feeling, so they can provide the best care to help you get the most out of life.

** Find a dialysis center at your destination

Plan your next trip to Las Vegas—like DeeAnn—or wherever your heart desires. DaVita's “Find a Center” has over 4,000 dialysis centers from around the country. Don't let dialysis keep you at home. Search now.