I have a research plan and 5 references, and you can add one or two references. Academic writing is general.

4-Dialysis_Without_Fear_A_Guide_to_Living_Well_on_Di.6-7-8.pdf

Home >Business & Finance homework help >Management homework help >I have a research plan and 5 references, and you can add one or two references. Academic writing is general.

Offer, Daniel, et al. Dialysis Without Fear : A Guide to Living Well on Dialysis for Patients and Their Families, Oxford University Press, Incorporated, 2007. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/leicester/

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Six

Dealing with Emotions

The Psychological Impact of

Dialysis

rue or false: people who are on dialysis are unhappier than

people who are not on dialysis? If you answered true you’ll

probably be surprised to hear that a carefully designed research study

has proven otherwise. The study, led by a psychologist, Jason Riis,

while he was completing graduate work at the University of Michi-

gan, compared forty-nine individuals on hemodialysis, three times

weekly, with forty-nine healthy individuals of the same age, race, ed-

ucation, and sex.1 All of the subjects were given electronic devices

that prompted them to record their moods throughout the day.

Moods were rated on a 5-point scale from “very pleasant” to “very

unpleasant” and subjects were given the opportunity to answer these

questions privately and repeatedly over time.

When the results of the two groups were compared, the re-

searchers found that the levels of happiness were about the same for

the two groups. The study also found that the dialysis patients over-

estimated how happy the healthy people would be and the healthy

people underestimated how happy the dialysis patients would be.

Why is it that we are so quick to assume that dialysis leads to unhap-

piness? On the contrary, we the authors have come to believe that if

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Dealing with Emotions 115

you were relatively happy before dialysis, in time, you will be happy

after. Alternatively, if you were relatively unhappy before dialysis, you

will still be unhappy after. How a person copes with dialysis and the

attitude he or she adopts toward it is often reflective of how someone

has managed to cope and the attitudes he or she has learned to adopt

throughout life.

Of course, dialysis is initially shocking for everyone. This initial

shock can cause a serious crisis for many individuals. Going on dialy-

sis can result in depression, anger, anxiety, and even occasionally an

emotional breakdown. It can also result in severe crisis in family rela-

tionships, which occasionally can result in separation and divorce.

However, in these cases the marriage was suffering to begin with.

Dialysis is simply the straw that breaks the camel’s back. There is no

question that individuals who have no other physical illnesses (such

as diabetes, strokes, heart disease) often do better emotionally than

individuals who have other major physical illnesses for the simple fact

that their burden is lighter. But after the initial shock has passed and

a person has become used to the new routines of the dialysis, he or

she settles down to live life within the constraints of the treatment.

During this initial period of shock, what are the tools that a per-

son can use to help ease this emotional distress? In this chapter we

will identify and discuss some of the most common emotional re-

sponses to dialysis. In addition, we will recommend ways to help you

deal with this emotional turbulence. The good news is that like most

kinds of turbulence, eventually this too subsides. By addressing and

tending to these emotional bumps, you may eventually, as the afore-

mentioned study shows, find yourself just as happy as the next guy.

Throughout the years that Daniel has been visiting dialysis clinics

we’ve met many rather well-adjusted, seemingly happy individuals,

but most of these acquaintances rarely opened up to us about their

trials and tribulations when first starting dialysis. Nor did they tell us

much about the sources of strength they used to help them survive

the tough times. But in the course of researching this book, Susan

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116 D i a l y s i s w i t h o u t F e a r

met Jeffrey, a pastor for a medium-sized interdenominational church

who spoke candidly about the physical and emotional trauma of first

starting dialysis and the important role that his faith played in help-

ing him to cope.

Jeffrey’s Story, a Hemodialysis

Patient’s Perspective

When Susan meets with Jeffrey, a middle-aged African American

gentleman, he strikes her as just that—a gentle man. Jeffrey has been

on dialysis for only sixteen months and he explains that he is still

adapting to the transition. Like his father before him, Jeffrey suffers

from diabetes that eventually led to his renal failure. His father, one

of twelve children, had begun dialysis many years before. Jeffrey in-

forms Susan that he also has six uncles who have gone on dialysis,

and he says that he can identify at least four generations of diabetics

in his family. Because of this genetic disposition Jeffrey surmises that

he is the first, but likely not the last, of the second generation of fam-

ily members to undergo dialysis.

Just four years earlier Jeffrey had been diagnosed with diabetes.

And one year after that, he was referred to a nephrologist who told

Jeffrey that his kidneys were operating at 40%. Jeffrey attempted to

watch his sugar levels, but he didn’t think he was headed toward re-

nal failure or dialysis. Then two years later he noticed swelling in his

legs and ankles. Every evening he would elevate his legs and every

morning the swelling would be gone. What Jeffrey, who admits he

was in denial, didn’t realize was that the fluid was simply moving

around from one place to another. This routine continued until one

morning, as he was walking into the building where he worked, Jef-

frey collapsed. Paramedics rushed him to the hospital and the next

thing he knew he was being dialyzed.

At first, Jeffrey says he really didn’t think about what it meant to

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Dealing with Emotions 117

be on dialysis. He just wanted the doctors and nurses to do whatever

it took to make him feel better. But he soon realized, he did not like

the catheter or the cramps he suffered as fluid was removed from his

lungs and body. All told, during his week-long hospital stay the

medical professionals removed forty-five pounds of liquid. After that

week, Jeffrey says he was a different person physically. It wasn’t until

he went to his local dialysis clinic for the first time after leaving the

hospital that dialysis began to impact him emotionally.

How were you affected emotionally? “Well, my father has been on dialysis for about eight years, so I

had been around it. I had helped him deal with his emotional roller-

coaster, but now I had to face dialysis myself. I think what bothered

me the most was watching my family deal with my illness. My kids

told me that I’d always been the strong one. I’d never been sick. I’d

always visited other people in the hospital and comforted them. So

for my children to see me flat on my back made them feel very help-

less. Having them see me this way was difficult for me. When I was

in the hospital, my daughter didn’t even want to come to see me. She

didn’t want to deal with it. Just now she has started to write some po-

etry about her experience when I went on dialysis. Finally, she is

learning to express herself more.

“I think dialysis was also traumatizing for my wife. We were get-

ting ready to travel, to buy a new home and do a lot of things we’d

dreamed of when the children were grown. I think she just had never

imagined herself in that predicament in her life.”

What was dialysis like for you when you first began? “When I first started I had a lot of problems with my graft. Not

just anybody could stick me, and that was upsetting too. I have a high

pain tolerance, but it was frustrating when I would get a less ex-

perienced technician. Also the trial and error of trying to find my dry

weight was the most difficult part. I didn’t really know how much

fluid I could have in between sessions, how much would neg- atively

impact me during and after my sessions. When I first began,

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118 D i a l y s i s w i t h o u t F e a r

I was arriving ten to twelve pounds over my dry weight. That wasn’t

good. I would cramp during and after the session. Now when I come

in, they take off two or three pounds. Unfortunately, I had to learn

how to control my liquids the hard way. Until you start learning what

fluid does to you and what certain foods do to you, you can feel

pretty bad. Adjusting to a new diet was a whole other can of worms

that I had to deal with. Over time I learned about my potas- sium,

phosphorus, and calcium.”

What advice would you give to someone who is new to dialysis? “Really spend a lot of time talking. Talk about how you feel phys-

ically and emotionally. When I first went on dialysis I read some

pamphlets, but honestly it was as if they were written in Chinese.

They were filled with information. I think it would have been help-

ful for me to read more about the psychological aspects of what a

person goes through in the beginning. I think visiting with a support

group or seeing a counselor might have also been beneficial. I didn’t

do either of these things, although I did regularly read a newsletter

that included personal testimonials. I found reading about other

people’s stories and what they went through to be extremely helpful.

I also had my wife read the testimonials too. They were helpful for

both of us.

“I would also recommend that new patients speak with the veter-

ans in the clinic. Some of the folks here, the older folks (I’m the new

kid on the block), they really helped me through a lot. They would

ask me ‘How are you feeling? What are you going through?’ And they

would tell me what questions I should be asking the medical staff.

Having that kind of support and friendship was really very

advantageous.”

What advice would you give to a family member of someone new to

dialysis? “Talk to somebody about what you are going through emotion-

ally. At first there are a lot of emotions that the family and especially

the spouse are going through. But they don’t want to share these

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Dealing with Emotions 119

emotions with you because they feel that you have enough to worry

about. Despite this, family members also need an outlet or someone

to talk to. I wish initially my wife had done that more. She held a lot

of her emotions in for a long time. I think possibly talking to my fa-

ther and mother, or somebody who had gone through the same

thing, would have helped her a great deal.”

Jeffrey says that when he first began dialysis his wife took time off

from work to drive him dialysis. Because he didn’t want her to feel

like she had to spend so much time caring for him, he tried to get

back on his feet as quickly as possible. Jeffrey tells Susan, “I think

getting back to a relative state of normal where I could drive myself

has helped a lot. I also think it helped that I opened up and said to

her, ‘Tell me how you feel.’ I think she wanted to know what I was

going through emotionally as well. This was important for her. It was

difficult for me, at first, to share my feelings with her. In the be-

ginning I didn’t really like to talk about it. I would just say ‘I’m feel-

ing pretty good!’ ”

Interestingly enough, both Jeffrey and his wife were trying to pro-

tect one another from the distress that they individually were en-

countering. Jeffrey didn’t want to burden his wife with having to take

care of him. He didn’t want to tell her truthfully how he was do- ing

and felt that he had to rebound and adjust just as quickly as pos- sible.

Likewise, his wife felt angry and sad that their life was no longer what

she had envisioned, but since she was the healthy one, she felt she

couldn’t share these emotions with her husband. During a stressful

time the two tended to keep their feelings to themselves. Eventually

when they began communicating more openly and hon- estly with

each other they began to cope better emotionally.

In addition to addressing your emotions, what are some additional

key success factors to living well on dialysis? “Really, every individual is different. I think if it wasn’t for my

faith, perhaps I would have a very different outlook on dialysis and

on life. Most of my life I’ve tried to encourage people to live well

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120 D i a l y s i s w i t h o u t F e a r

despite adversity. Suddenly I had to live as I’ve always preached.

Along with my faith, I also have a strong support system in both my

family and my community, which has helped me to stay positive and

optimistic.”

Are there any benefits to being on dialysis? “Sure—I’m glad we have it! Dialysis is doing what my kidneys can’t

do. I also think it has made me a better pastor. I’m more pas- sionate

about habits that affect our lives in a negative way. I’ve only missed

one Sunday at church since I’ve been on dialysis. The week I left the

hospital I missed preaching, but the following week I was there. That

first Sunday after I began dialysis I looked out at the con- gregation. I

really looked at the people who had been sick. Many of the

congregants had been ill for years. And I realized that our health

issues are a collective problem. We live in a society that promotes

unhealthy lifestyle habits. Now I’m much more conscious about

healthy living and am an advocate of better health. I’ve even started

a wellness program at the church for people to get their blood sugar

checked regularly.”

Jeffrey tells Susan he credits his faith, his motivation to help oth-

ers, and the support of those around him as giving him the strength

to cope, but he acknowledges that going on dialysis was tough. Phys-

ically it has been hard on him. Emotionally he has grappled with a

sense of failure and weakness, fearful that he has let his family down.

But fortunately Jeffrey’s sense of accountability to his congregants

whom he has preached to for so long has been his saving grace. As he

tells Susan, “For many years I had talked the talk. Now I had to walk

the walk.”

Like the veterans he speaks of, Jeffrey strikes Susan as a man who

has gone to battle with his physical and emotional demons and who

has now crossed over to a safer place. In order to be a role model, Jef-

frey was forced to find a way to cope. He admits his new schedule

and lifestyle still require adjustments, but he also tells Susan he hopes

to start traveling with his wife more, he is working full time,

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Dealing with Emotions 121

and he’s looking forward to seeing his daughter graduate from high

school soon. Susan can’t help noticing that he is living well and en-

joying life despite dialysis. Before they part ways, Susan finds herself

contemplating what sources of strength or coping mechanisms she

would draw upon if she were ever to walk in Jeffrey’s shoes.

Once the Shock Subsides: Coping with

Psychological Aftershocks

Like Jeffrey, most patients whom we met told us that it took some

time for their physical health to improve significantly before they

could begin to feel, much less deal, with the substantial emotions as-

sociated with this enormous life change. When they begin to feel bet-

ter physically is when many patients start to feel anxious, depressed,

or angry. Family members are also highly susceptible to these emo-

tions. It is normal and understandable to experience them. But the

people who do not do well on dialysis are the ones who cannot, over

a normal course of time, address and move past these emotional

states. Some individuals never cope well with dialysis. They think

their life has been forever limited and they absolutely hate the thought

of having to go to dialysis three times each week as long as they

live—or until they receive a transplant. Emotionally, these are the

people who do not do well. Now let’s look at some of the most com-

mon emotions that can negatively impact dialysis patients and their

families, what happens to those who do not cope well, and what cop-

ing mechanisms a person can rely on when working through these

emotions.

Denial

Denial is often the very first reaction of many dialysis patients. De-

nial is a state of nonacceptance. When in denial, a person refuses to

accept the fact that he or she is on dialysis. Obviously the person can

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122 D i a l y s i s w i t h o u t F e a r

see himself or herself receiving the treatment but chooses to believe

that it is temporary and that all will return to normal in a few weeks

or months. In this state a patient typically refuses to follow the diet

or acknowledge the liquid restrictions. He or she continues to act

and behave as before starting dialysis. The patient is neither angry

nor depressed; he or she simply refuses to believe that life on dialysis

is now a reality. As we all know, innocence can be bliss, but dialysis

patients cannot stay in this state forever. It is only a matter of time

before their denial causes their health to decline precipitously.

Sadly, many of the individuals whom we interviewed claimed not

to have believed what the doctors told them regarding their diet and

liquid restrictions. Too many said they had to learn to take care of

themselves and heed their doctor’s advice the hard way. This was un-

fortunate, because this learning path usually meant jeopardizing their

lives. Denial, while common, is not a particularly helpful re- sponse

to the newness of dialysis. As one physician we interviewed said,

“Like so many things in life, dialysis is a head game. Most pa- tients

won’t do well if they struggle and fight against dialysis rather than

work with it. Denial or the inability to come to terms with dial- ysis

prevents some people from doing as well as they might. Can you get

by when you are messy and inattentive and don’t comply with in-

structions? Yes you can, but if you want to do better you need to

have your thoughts together and understand what is being asked of

you. And by understand I generally mean you have to do what you

are told.” Patients are much better served the sooner they can accept

their reality and work within the guidelines that are set forth by their

medical team. One way or another, reality will eventually sink in and

when it does patients are then most often confronted with feelings of

anxiety, depression, or anger.

Anxiety

Anxiety makes one feel uneasy, fearful, nervous, and worried. Physi-

cally one can experience a quickened pulse, lethargy, irritability, and

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Dealing with Emotions 123

increased sweating. There are numerous sources of anxiety that pa-

tients associate with dialysis. Let’s start with the whopper, the big

kahuna of them all: anxiety about death. One patient we spoke with

had the very terrifying and unfortunate experience of watching as a

woman who was sitting across from him at dialysis went into cardiac

arrest. Sadly, he witnessed her death. And of course, one of the first

thoughts to cross his mind was, “That could be me. I could die.”

And that was an extremely frightening thought. It shook him to his

core. His experience that day was extreme and unusual, but even

without having such a jarring experience you too may be growing

anxious over the thought that dialysis has brought you a bit closer to

your mortality. Before dialysis, you might have thought you were in-

vincible (although in reality you weren’t) and now you know you are

not. “True, now that you are on dialysis, statistically speaking, your

chances of dying are greater than they were before your kidneys

failed and you needed dialysis.” There we have said it: you may die.

Dwelling on this fact can be paralyzing and unhealthy. Now it is time

to move on. The good news about facing your mortality is that once

you realize you won’t be on this earth forever you may actually

appreciate certain aspects of life more than you ever did before dial-

ysis. However, becoming accustomed to this new level of awareness

can and does often heighten levels of anxiety.

Dialysis patients are often anxious about death, but this is not the

only common cause of anxiety. Many times they are anxious about

the actual dialysis process itself; they are afraid of the needles, of see-

ing their blood outside their body, of feeling pain, of sitting among

other patients who are significantly sicker than they, wondering if the

treatment actually will work as intended. Feeling acutely anxious

about all of the above is normal—for a time—but human beings are

remarkably adaptable. As the novelty of dialysis wears off, you

should become increasingly comfortable with what goes on inside

the clinic and the patients who frequent the clinic. No one wants to

get used to dialysis, but many people do. Or at least they do enough

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124 D i a l y s i s w i t h o u t F e a r

to muddle through while taking ample pleasures from life. However,

if feelings of anxiety persist indefinitely, it may be time for you to

seek out additional sources of assistance. We’ll discuss these re-

sources shortly.

Now that you are dependent on dialysis to live, you may also be-

come anxious about what would happen to you in the event of a nat-

ural or terror disaster. Of course, it is not likely that you’ll ever have to

deal with either of these happenings, but even so, this is not an un-

reasonable fear to have. In times of crisis basic needs must be met. For

most people, their basic needs are food, water, shelter, clothing, and

medical care. For someone on dialysis, being able to access electricity

or supplies for peritoneal or home hemodialysis or a hemodialysis

center is another basic need that must be met. As you listen to the

world news and hear of the latest natural disaster it is normal to

think, “What would happen if the power were to go out, the roads

were to be washed out, or I was to be snowed in? What would happen

to me, if I could not get to the clinic or perform my own dialysis? How

long could I survive without dialysis?” These thoughts are scary, and

while we can find comfort by being prepared for emergencies (see

Chapter 10 regarding travel and emergency preparations), we can still

get worked up and nervous by constantly imagining doomsday

scenarios.

These types of “what if ” questions bring us to another common

source of anxiety: a fear of losing control. Many of us like to have a

sense of control over our lives, days, actions. We think that by mak-

ing lists, schedules, plans, routines, or goals we can influence the

course of our lives. This may be so, but there are also events we can-

not control that impact us profoundly. Going on dialysis is one such

event. Losing this real or perceived sense of control is often the pri-

mary anxiety trigger for many individuals. For people who demand

control, the best course of action is to gain knowledge and under-

standing and in some cases even pursue a modality that allows for

greater self-management and care.

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Dealing with Emotions 125

Last, many individuals experience worry and anxiety about how

and if they will be able to continue to work and be a provider for

their family. Financial concerns are a huge source of anxiety for many

dialysis patients. Or, as we saw with Jeffrey, some people may be

anxious about how dialysis will affect their family not just finan- cially

but emotionally as well. This sense of concern and responsibil- ity for

the well-being of their loved ones can be an additional source of

anxiety.

Depression

By far the most common reaction to undergoing dialysis is depression.

Statistics show that up to 40% of people with nonfunctioning kidneys

experience depression at some point in time.2 Larry whom we met in

the previous chapter told us, “I wish I’d known before I went on dial-

ysis that the toxins that were gradually increasing in my system as my

kidney function declined commonly can cause depression. In addition

to being somewhat more forgetful for the few years prior to dialysis, I

know that I found myself emotionally overwrought at times. I cer-

tainly considered going into therapy and getting medication. I think it

affected my relationships with my wife and children. I wish I’d known

the emotional impact that the toxins were having on me because after

those first three weeks of dialysis all of a sudden it was sunshine.” In

Larry’s case his depression was corrected by going on dialysis; however,

some individuals actually find the situational stress of dialysis to per-

petuate depression. Or as Elena of Chapter 3 told us, “The first thing

that will happen when a person begins dialysis is he or she is going to

be depressed. You start treatment and you are so depressed.” And to

second that thought, a dialysis social worker whom we met explained,

“I stop by every treatment at the beginning so I can see how the per-

son is adjusting. Adapting to dialysis is not easy. Everyone has a hard

time and depression is really common.”

Symptoms of depression include feelings of sadness, loss of

appetite, insomnia, difficulty concentrating, lack of interest in life,

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126 D i a l y s i s w i t h o u t F e a r

a tendency to withdraw from others, and an unwillingness to en-

gage in activities that once brought pleasure. Patients often become

hopeless and encounter feelings of despair when they learn that they

have to undergo dialysis. Sometimes they see no light at the end of

the road and some patients even become profoundly de- pressed. If

the depression lingers, it can become more severe and can pose a

threat to the patient’s life. In the extreme reaction, pa- tients become

suicidal and occasionally attempt or even commit suicide. This is,

however, very rare.

Depressed individuals often blame others (nephrologists, nurses,

technicians) for their illness and refuse to take any responsibility

themselves. Any problems that occur in the clinic are somebody

else’s fault. If the technician has a hard time sticking the needle into

the access, he is incompetent. If the patient becomes light-headed or

nauseous, it is the nurse’s fault. It is always somebody else’s problem.

The fact that a person has a serious illness and that the machine lit-

erally saves his or her life is not something that the individual can

appreciate in this state.

Like anxiety, depression can be short-lived and pass after a num-

ber of days. However, if depression persists longer than a few weeks,

once again there are resources available to help you move on. It is

important that you communicate openly and honestly with your

doctor and social worker about how you are feeling emotionally. If

you do so, they will be able to identify when you might need coun-

seling or medication to help treat your depression. Sometimes when

we are depressed, we are the last ones capable of identifying or diag-

nosing our depression.

Anger

Feelings of depression and despair can easily mutate into anger. When

patients feel tremendously sorry for themselves, they at times become

enraged at themselves, their loved ones, the caretakers, anyone within

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Dealing with Emotions 127

earshot. They are so furious that they have been given a raw deal in

life that they scream, yell, curse, and at the end of the day, do not feel

better. Of course, wondering “Why me?” is normal for a while. Yet if

the patient cannot move past this sense of injustice, a constant

lament of “Woe is me” can become toxic and antiproductive. These

patients have temporarily lost an important part of living with ad-

versity. They can no longer take a step away from themselves and re-

alize that they should be grateful to be alive. Yes, they have to go to a

clinic three times a week as long as they live or until they receive a

transplant. And yes, even if they travel to the end of the earth, they

still have to be on dialysis three times a week. But they can work,

play, make love, and enjoy most of their waking hours each week.

However, an ongoing sense of anger and frustration at the world pre-

vents them from seeing this reality. Like anxiety and depression,

anger is a completely understandable emotion for an individual to

experience when first starting dialysis. However, learning to release

this anger and move on is necessary in order to enjoy an improved

quality of life.

One patient told us that when he began dialysis, his family suf-

fered a great deal from the severity of his moods. He found that he

was angry at them all the time. He told us that he wished he had

understood how his transition to dialysis was impacting him

emotionally. Had he known that anger was a normal response he

might have tried to redirect it elsewhere, or, at least by acknowl-

edging it, he might have been able to control it better. However, at

the time he didn’t understand that he was just so very angry about

having to go on dialysis. He wasn’t able to express or communicate

his anger appropriately. He attempted to keep it bottled and hid- den.

However, his rage boiled up anyway and he found fault with

everything and everyone around him. In time he learned to live with

his lot, his anger subsided, and his home life improved. But he still

regrets the way he treated his loved ones and wishes that he

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128 D i a l y s i s w i t h o u t F e a r

had been more self-aware as to what was happening with him

emotionally.

Paranoia and Psychosis

Unlike anger, which is quite common among dialysis patients, paranoia

and psychosis are two relatively uncommon emotional reactions, but

still worth noting here. For a very small percentage of individuals,

dialysis can lead to these highly troubled emotional states. We have

witnessed a few individuals on dialysis who were extremely paranoid.

In these cases and others, patients are not simply anxious or angry. They

take their anger a step farther and believe that everyone, other than

themselves, is responsible for their problems. They truly believe that

all the people who care for them—the doctors, nurses, technicians—

are determined to hurt them. Dialysis is a conspiracy to ruin their lives

and they have been victimized by poor care. They may often yell or

scream at the staff, sharing their deluded views with every- one in

shouting distance.

Another response to dialysis is to have a complete mental break-

down or what the medical establishment would call a psychotic

break. Dialysis doesn’t cause the breakdown. Rather, a patient is

significantly mentally ill to begin with, and dialysis simply pushes the

individual over the edge. A patient who has a breakdown loses the

ability to think rationally, often acts out violently, may attempt to

pull out needles during a dialysis session, and may require re- straints

in order to sit still throughout a treatment. This is not a pleasant

scene for other patients to witness. Given its rarity, we simply raise

this reaction to dialysis in hopes of preparing you, should you be in

the uncomfortable position of witnessing such a disturbance. In

instances of patients suffering from mental illnesses of great

magnitude, either paranoia or psychosis, psychiatric treat- ment

including medication can be initiated and patients can im- prove

markedly.

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Dealing with Emotions 129

Healthy Coping Mechanisms and Resources

What if you cannot get past your normal feelings of anxiety or depres-

sion or anger? What then? Well, you may need some assistance. Assis-

tance comes in many shapes and sizes and there is no shame in needing

help emotionally. As we’ve heard before, starting dialysis is a big deal.

Usually events of this magnitude present emotional hurdles that must

be overcome. You may think that you are doing fine, but if you can’t

sleep at night, or if you are breaking into a cold sweat every time your

dialysis machine beeps, or if you notice that everyone from the recep-

tionist to the technician seems to be giving you dirty looks in response

to your behavior, then it might be time to acknowledge that you aren’t

coping so well. There are several resources available to you. Usually the

hardest step is knowing to ask for help and knowing that this is not a

sign of weakness. In actuality it is just the opposite; it is a sign of

strength to be able to know when you need support. The most com-

mon sources of assistance in coping include family and friends, profes-

sional counselors, support groups, medication, faith, and spirituality.

Family and Friends

As we saw with Jeffrey, his first reaction toward dialysis was to try to

be strong for his family. He didn’t want them to worry and so he

didn’t really let them in or tell them what he was going through. The

people with whom he felt the most comfortable sharing his concerns

and feelings turned out to be his new friends, the other patients

whom he met at his clinic. He found that talking with them was an

excellent source of comfort and information. And in time he did be-

gin to open up to his spouse, which he admits really helped both of

them emotionally. There is a difference between complaining and

communicating. Being able to introduce your loved ones to what you

are experiencing is an important step in the coping process. In

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130 D i a l y s i s w i t h o u t F e a r

the past, Daniel has commented to Susan that having Margie in his

life “makes dialysis significantly more bearable.” He added, “I feel

that I have an ally, someone who could go through the battles with

me, which makes a huge difference.” We hope that all our readers are

fortunate enough to have someone like that in their lives.

Other family members—for example, young children or adoles-

cents living at home—occasionally find it difficult to deal with the

dialysis patient. The illness should be carefully explained to them,

and as much as possible, they too should be part of the team.

A fine balance needs to be struck between support and reliance.

Leaning on your loved ones for concern and understanding is im-

portant. Yet both the family members and the patients themselves

should be careful not to underestimate the patient’s capabilities. In

other words, dialysis patients shouldn’t be babied too much or too

long. It is important for dialysis patients to reclaim their indepen-

dence and productivity as much as possible.

Despite this, the spouse of the dialysis patient often does have to

spend some of her or his time taking care of the dialysis patient. Even

under the best circumstances, three times a week the patient comes

home from dialysis and he or she is weak, tired, and in need of a little

extra attention. The four non-dialysis days are usually bet- ter, and

the patient can take care of himself or herself. As the weeks roll into

months and years, the caregiver needs to have what has been called

“respite care.” The spouse of the dialysis patient needs to do

something for himself or herself that does not involve the patient.

For example, a spouse can go to a resort, go hiking, visit relatives in

another city or country, or even just go to a movie or a theater per-

formance. On returning, he or she will feel reenergized.

Margie is a huge advocate of the benefits of respite care. Over the

years, off and on she’s experienced periods of feeling burned out. Not

often, but at times, she experiences a weariness that comes with in-

creased worrying about Daniel’s health. Since Daniel went on dialysis,

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Dealing with Emotions 131

Margie has been fortunate enough to take an annual trip on her own.

Most notably, she has gone hiking and camping with tour groups in

National Parks throughout the United States and Canada. Daniel is not

a fan of camping or hiking, which is why these trips are a partic- ularly

good outlet for Margie. Although he misses her, he is not resentful of

her experience and she is able to do something she loves, something

that is just for her. Her weeks outdoors are very rejuvenat- ing and she

returns home ready to resume her routine of providing tender loving

care and encouragement for Daniel.

Professional Counselors

Although we often want to rely on friends and family members to pro-

vide all the help we’ll need, sometimes when they are also trying to cope

they can’t always provide the most objective or adequate counsel. Espe-

cially in the beginning, as we’ve mentioned, family members are often

struggling themselves with the new circumstances. To have an open line

of communication is important, but it is equally important to real- ize

a family member or friend’s limitations. Sometimes we may benefit

from the expertise of an unbiased professional who is trained to help in-

dividuals undergoing stress and emotional upheaval. Every dialysis clinic

has a social worker on staff. Social workers wear many hats in- cluding

that of travel expert and financial counselor. However, their intended

role is to provide psychological counseling and emotional support to

dialysis patients and their families. Although many patients do not want

to spend one minute longer than necessary at the dialysis clinic, they

may be well served to make an appointment to talk with the social

worker. Or, you can even ask the social worker to come and meet with

you while you are dialyzing. Sometimes social workers may even refer a

patient to a counselor outside the clinic. The costs of an external

counselor may be partially or completely covered by Medicare.

Daniel is a psychiatrist by trade and has spent a lifetime treating

individuals in need of emotional assistance. When he first went on

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132 D i a l y s i s w i t h o u t F e a r

dialysis he himself sought out the help of a psychiatrist outside of his

clinic with whom he could meet weekly. Margie did as well. They

found having someone to talk with confidentially who could be

completely objective and willing to listen to what they were going

through was helpful. Similar resources are available to you if you seek

them out.

Support Groups

The social worker at the clinic will also be knowledgeable of any

support groups in the area for dialysis patients and their families.

Many times just hearing that what you are going through is normal

and that others are experiencing the exact same thing can be a great

source of comfort. There are also support groups for individuals

awaiting transplants, and you may be interested in investigating one

of these. Like the community in the dialysis center, support groups

can assume healthy or unhealthy dynamics. When you at- tend a

support group, it is important to try to gauge which type of group

you have found. Is it the type that truly provides support, helpful

tips, and inspirational stories? Or is the type that quickly dissolves

into a black hole of complaining, negativity, and wallow- ing? If

you’ve arrived at the first kind, great! This might be a good place for

you to help process all the changes going on in your life among

other people who can really understand and relate. However, if

you’ve landed with the second kind, leave and don’t re- turn!

Attitudes can be contagious, and sticking with an unhealthy group

dynamic can make you susceptible to catching these nega- tive bugs.

Medications

Your nephrologist or your psychiatrist, if you are referred to one, can

determine whether your anxiety or depression should be treated with

the use of medications. If anxiety or depression becomes para-

lyzing, debilitating, persistent, and generally preventive of your

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Dealing with Emotions 133

ability to enjoy life, then medications may be in order. Many dialy-

sis patients and family members benefit from the use of anti-anxiety

and antidepressant medications. Fortunately, we live in a day and age

when the types of medications available are very effective, and many

have minimal side effects. There is no weakness in turning to

medications for help, and there is no reason to be a martyr or suffer

needlessly. There is no shame in using medications to care for your

mental health just as you would use medications to care for your

physical health.

Faith and Spirituality

Jeffrey spoke of his faith as grounding him and helping him to cope

with his life on dialysis. A belief in God or a higher power can be

comforting and reassuring to many during times of hard- ship.

Spirituality can take on various different forms depending on one’s

beliefs. Being able to acknowledge that we are not in con- trol and

that there is someone or something far greater than us can be

especially helpful in overcoming anxiety, depression, and anger.

Spirituality may include meditation, prayer, or attendance at a

house of worship. Talking with a priest, cleric, or rabbi about life on

dialysis and what you are dealing with can also be an excellent outlet.

Spiritual leaders can often provide compassion, understanding, and

advice. Typically, they have experience with helping members of their

community cope with adversity; as a result, they may be able to share

the collective wisdom they’ve gained by counseling others who have

turned to them for solace.

Whether you opt to rely on family, friends, a support group, a so-

cial worker, psychologist, psychiatrist, your faith, spirituality, and/or

medications, it is important to remember you need not take this

journey alone. There are numerous resources available to help you

weather the storm until you can reach calm waters.

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134 D i a l y s i s w i t h o u t F e a r

Once the Storm Has Passed, Maintaining a Positive Outlook

Once you’ve dealt with the initial shock, anxiety, depression, and

anger, you will still need to cope with dialysis one day at a time for as

long as you are receiving this treatment. Over time, most people find

that being happy while living on dialysis becomes progressively eas-

ier. However, you may have setbacks along the way; when these arise

you may need to rely a bit more heavily on the coping mechanisms

we’ve outlined above. But when the worst has passed, what are the

day-to-day techniques you can employ to ensure that you maintain a

good outlook on life? There are several. Many listed below have

earned their own chapter in this book, but we’d be remiss not to

mention them briefly here as they are the most common techniques

mentioned by dialysis patients and health care providers alike:

1. Laughter. As we read in Chapter 4, laughter is critical. Almost

every person we met with said the ability to laugh and not take

life so seriously was liberating and rejuvenating. And one patient

told us, “If I didn’t have humor I’d probably be dead right now.”

2. Work or volunteerism. Finding a reason to be and to contribute

to others can provide an ongoing wealth of self-esteem and self-

confidence.

3. Exercise. Exercise has been proven effective at positively enhanc-

ing our moods through the chemical release of endorphins.

4. Travel. Travel breaks down the monotony of the dialysis sched-

ule. It may not introduce spontaneity back into life, but it does

transport a person to an entirely different place for a period of

time.

5. Knowledge. Knowledge is power and it is why we decided to

write this book. By learning about your disease and your treat-

ment you can lessen your fears and concerns.

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Dealing with Emotions 135

The more you are able to put these suggestions into action, the less

you will have to work at staying positive: it should come naturally. As

it does, if you watch, you may notice something interesting begin-

ning to happen. Healthy people, whom you encounter during your

daily walk of life, will not shy away. In fact, they will enjoy your com-

pany. They may not even realize you are on dialysis and might even

be astonished to find out. Or if they do know you are on dialysis, they

may even begin to admire and look up to you for your ability to live

well in the face of adversity. You will become a role model. Of course,

the main reward of coping well is being content with life. This is our

primary wish for our readers. But the unexpected respect and admira-

tion of others can be a very welcome secondary benefit.

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Seven

The Impact of Dialysis on

Interpersonal Relationships

Love, Sex, Family, and Friendship

oss a rock into a body of water and watch as the water cas-

cades from where the rock hits the surface. Now imagine that

someone on dialysis is much like that rock being tossed into the wa-

ter. The impact on the water is greatest at the center, the location of

where the rock hits the surface. But, like the cascading water around

the rock, those around a person on dialysis feel the reverberations

of the impact and are profoundly affected as well. The more inti-

mate you are with the person, the larger the ripple. Spouses, chil-

dren, parents, and others very close to the person must endure the

strongest impact. Those on the outer periphery—for example, a co-

worker or a simple acquaintance—may feel only the slightest blip or

even calm. This chapter is written to help those near and dear to a

dialysis patient ride the waves of dialysis successfully and to help

patients understand the inevitable reverberations taking place

around them.

This ripple effect was articulated by Keith, a middle-aged African

American man whom a social worker had identified as someone liv-

ing well on dialysis. In total, Keith had spent four plus years on

dialysis—three and a half on hemodialysis and one on peritoneal.

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The Impact of Dialysis 137

Although Keith performed peritoneal dialysis from the comfort of

his home, he and Susan agreed to meet in an empty room at the dial-

ysis center where he’d periodically go to have his labs tested. As he

signed the consent form that assured him of anonymity, Keith said,

“Go ahead and use my name if you want. Whatever I tell you, I’d tell

anyone. I’m an open book.” Despite his assurances, we felt com-

pelled to mask his true identity.

Keith’s Story, a Perspective of a Peritoneal Dialysis Patient

During the course of their conversation Susan learned that Keith had

not had the easiest life. Both he and his wife were recovering drug

addicts and alcoholics. At the time of the interview, he had been

sober for eleven years and his wife for ten. His kidney failure was

discovered during an optional routine blood check provided by his

employer. His tests showed that he was perilously close to needing

dialysis. Feeling perfectly fine at the time, Keith was stunned. In fact,

he didn’t believe the doctors and refused to have an access built

until his body became so bloated with fluids that the physicians

explained he would die without immediate treatment.

Keith told Susan the doctors were unable to declare with certainty

the cause for his kidney decline, but off and on he has wondered if it

was from the years of drug and alcohol abuse. Now he simply chalks

it up to fate. During the course of the interview Keith opened up to

Susan about some of the most sensitive and intimate details of his

family, marital, and sexual life after having gone on dialysis.

Have you found that peritoneal dialysis is better than hemodialysis? “I like it better as far as lifestyle goes. I can dialyze from home in the

evenings. Also I hated the huge needles that they use for hemodialysis.

I’ve seen some people’s arms beaten up from years of injections and

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138 D i a l y s i s w i t h o u t F e a r

I didn’t want that. On the flip side, they put the catheter down so low

in my abdomen that it can be aggravating when my pants aren’t loose

enough. You have to be conscious of it at all times.”

Has the location of the catheter impeded your sex life? “Well I was about to mention that, but didn’t know if it was ap-

propriate. Yes it has. Now when I’m undressed I’m very conscious

that someone can see this tube hanging out of my stomach. You al-

ways have to keep it clean and now I’m worried that my or my wife’s

body fluids will get in there.”

Has dialysis affected your sex life? “Yes, my sex life after going on dialysis in general—not just peri-

toneal dialysis—has faded drastically. So much so that I had to talk

to the doctor here. He even offered to talk to my wife. She thought

it was her. I kept trying to tell her, ‘Baby it’s not you; it’s the disease

you know. It has nothing to do with you.’ But, she wasn’t buying that.

My drive is not there. Basically it is nonexistent. Dialysis has been

disastrous on my sex life.”

Did you expect to encounter sexual side affects when you went on

dialysis? “When my kidneys first failed, everyone told me this was going to

happen. But my ego kicked in and I went on a mission to prove them

wrong. I went out and cheated on my wife. I don’t know if that is an

excuse or not, but that is what I did.”

Keith explains that his infidelity created a serious rift in his mar-

riage of sixteen years. After receiving a confrontational phone call

from Keith’s mistress, his wife left home for two weeks. Keith’s at-

traction to the other woman was not singularly sexual. He described

her as being “more someone that I could talk to than have sex with.”

Eventually Keith and his wife sought counseling, but his wife was ex-

tremely angry and upset. Luckily for Keith, his wife acknowledged

that she had received second, third, and fourth chances during his

first year of sobriety. At that point in their marriage she was still

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The Impact of Dialysis 139

struggling to kick her habit, but Keith stuck with her. In return she

decided she would forgive him this one betrayal.

What would you have liked to have read about soon after starting

dialysis? “I haven’t read or seen anything about the sexual part of it. When

my wife and I first started having problems I asked the doctor if he

had any literature about sex and dialysis. He didn’t. I think something

should be available because it is a very real part of dialysis patients’

lives. All the men I’ve spoken to have encountered the same issues.

And my wife recently spoke to a woman on dialysis whose husband

left her in part for the same reason. I think there are many husbands

and wives walking around feeling like they aren’t attractive any more.”

How does your wife feel about your sex life? “There used to be a time where I wanted sex all the time and she

would push me away. I told her, ‘I can’t believe all these years I’ve

been chasing after you and you’ve been pushing me away, and now

that my kidneys fail you want sex every night!’ ”

How do you respond to her needs? “I look at my wife and know that I need to take care of her sexually

but it’s just not there. There is about to come a time when I’m going

to need to force myself just because and that will be awkward.”

Are there other ways that your wife and family were impacted by

dialysis? “In the beginning I went from depressed to angry. I was pretty hard

on my family when I first started. My ten-year-old daughter is the love

of my life. She and my wife caught hell. I was grouchy. Mean. They

weren’t used to my behavior. Suddenly they found themselves getting

snapped at for little things.”

Do you think your wife was afraid you’d die? “You’d have to ask her. She knew it was an alternative that I’d con-

templated. At first, I told my wife that I didn’t want to spend my life

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140 D i a l y s i s w i t h o u t F e a r

this way, that I just wanted to let it happen and die. She told me,

‘You better suck it up and not cop out.’ ”

What role have your wife and daughter played in your transition to

dialysis? “Well my daughter was spoiled rotten and continues to be spoiled

rotten! She and my wife are the reason I’ve managed to adjust. No

matter how grumpy I get, they keep coming back for more. They are

my support system and the most important part of living well on

dialysis is having a support system. I can’t stress how helpful they’ve

been. It is just so important for people around a dialysis patient to be

supportive through the good days and the bad days.”

Keith’s tale of infidelity may sound a bit extreme to some—and cer-

tainly is not representative of every dialysis newcomer’s experience—

but the inherent themes he raises—seismic shifts in his marriage,

issues of virility, diminishing drive, care giving and support—are not

uncommon among dialysis patients. What is uncommon is actually

discussing them openly. Dialysis patients may talk discreetly among

themselves, but from what we’ve seen and heard, very little informa-

tion about interpersonal dynamics and challenges has been captured

and made available to the dialysis community. In the rest of this chap-

ter we’ll discuss the different variables that impact those around a dial-

ysis patient from the center of the ripple outward: from spouse to child

to friend to acquaintance.

The First and Biggest Wave: The Primary Caregiver

Who Is a Caregiver?

Typically a caregiver is a spouse or parent, or occasionally an adult

child who—aside from the person actually undergoing dialysis—will

be impacted the greatest. For the sake of simplicity we will refer to the

primary caregiver as the spouse, although we acknowledge that there

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The Impact of Dialysis 141

are many situations in which this is not the case. As we describe the

role of the spouse and the effects that dialysis has on the spouse, most

topics of discussion (with the exception of sexuality) are transferable

to other individuals who may fill the role of primary caregiver.

Whether or not you consider yourself a “caregiver” is debatable. A

dialysis patient is not an invalid and does not require round-the-clock

care. In fact, dialysis patients want to be treated like anyone else. But

they do sometimes have bad days, feel weak or tired after dialysis, or

encounter medical complications. During these times, they will look

to someone to lean on for support and to ease their fear. The person

closest to them will by default assume this responsibility and by doing

so will on some level step into a caregiving role.

Also bear in mind, for some dialysis patients, there is no primary

caregiver. The patient simply takes care of himself or herself. For ex-

ample, earlier in the book we met Elena who lived with her parents

when she first started dialysis and then later lived on her own as a

single woman. Having a primary caregiver is not a prerequisite for a

dialysis patient. However, if you are married and your spouse goes

on dialysis you will to some extent suddenly find yourself in this new

role. This next section is directed to all those on the front lines. You

may not be sitting in the chair, but you are the one who must con-

tend with the nutritional requirements, mood swings, and medical

complications that affect your spouse. While it certainly isn’t the

same as being on dialysis, at times it may not seem fair that your life

is changing significantly as well.

Stresses on the Ties That Bind

As we saw from Keith, transitioning to life on dialysis can put an

enormous strain on a relationship or a marriage. Over time, mar-

riages go through ups and downs. When a husband or wife begins

dialysis, it is safe to say that the marriage may encounter a “down.”

We speak from experience when we say that the introduction to dial-

ysis can initially be rough on a couple. And rough is something of an

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142 D i a l y s i s w i t h o u t F e a r

understatement. The transition to dialysis, which is a stressful time,

can really test the strength of a relationship.

Why does this happen? With the introduction of dialysis you sud-

denly have two individuals who in their own ways are dealing with an

assortment of emotions that include but are not limited to guilt, re-

sentment, fear, anger, disbelief, frustration, self-pity, confusion, and

worry. Each one in his or her own way is grieving the life that must

now change to accommodate dialysis. Now imagine these two very

anxious, stressed-out people living under the same roof. Chances are

they will have short fuses and will be inclined to snap at one another.

Similar to Keith’s experience, couples may take out their anger and

frustrations at the closest easiest targets—one another. They may find

themselves being very unpleasant to one another and may even grow

distant. Generally speaking, they may have a very difficult time living

with each other, much less loving each other.

Like many marriages that encounter high-stress situations, some are

unable to withstand the pressure associated with these reactions. We

have known dialysis patients and their spouses who have separated or

divorced. Divorce is a part of life and dialysis patients are not exempt.

On the other hand, a social worker who had worked with dialysis fam-

ilies for over three decades said she felt that divorce rates were very low

among dialysis patients and their spouses. She suspected the low rate

of divorce was due to the enormous amount of guilt associated with

leaving a person who is sick. We really don’t know if the divorce rates

are higher, lower, or the same among dialysis patients as compared to

the rest of the population. What we do know is this: during periods of

adjustment to dialysis, marriages are stressed, sometimes to their limit.

Some marriages succeed. Others do not.

If you are going through a rough patch, don’t despair entirely. Bear

in mind that time and patience can be your most valued friends. Sig-

nificant life changes take time to adapt to. These changes will put de-

mands on your relationship to change. If the relationship is built on a

solid foundation a couple will successfully adapt. However, a spouse

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The Impact of Dialysis 143

needs to be patient and allow for these changes to take place over the

course of days and months. On the flip side, if the relationship is

healthy and strong, dialysis may eventually bring a couple closer

together.

Because dialysis is a humbling experience for all involved, it can

make individuals have a greater appreciation not just of their life but

of the people in their lives. Typically when we appreciate a person

more fully, we treat him or her with a greater love and respect. If you

are lucky enough to persevere through the changes and challenges of

adapting to dialysis you may be fortunate to come out with an even

more loving relationship in the long run.

Once the initial introduction to life on dialysis has been worked

through and a couple has gotten into their new groove, they still

aren’t home free. Intermittent stresses and strains may come and go

throughout the marriage whenever a new medical issue, whether

temporary or permanent, arises. We liken this process to walking on

a balance beam. Before dialysis, you and your significant other are

confidently walking across the beam in lockstep one following the

other. Then along comes dialysis and bam! You are both knocked to

the ground. Hopefully with luck and perseverance you find your

way back up on that beam. Until one day, a new medical issue arises.

When this happens, depending on the severity of the issue, you

may tumble to the mat again (and with that comes renewed fighting,

distance, disharmony), or perhaps the two of you simply lose your

footing, wobble a bit, then find your equilibrium and continue on.

And so it goes. Continuously finding your way back up on that beam

and learning how to maintain your balance is a critical skill you must

now master.

Asking for Help and Education

Finding your own resources for support and increasing your own

knowledge about dialysis will be critical when seeking this equilib-

rium. Now that the person closest to you is relying on dialysis to live,

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144 D i a l y s i s w i t h o u t F e a r

you may contemplate what would happen if he or she dies. You may

have an overwhelming fear of being alone. You may struggle with

how to be more independent and less reliant on your partner for self-

definition. You may be extremely fearful of your partner’s pain and

suffering, now and in the future. You may even harbor feelings of re-

sentment or anger at this person whom you love, for putting greater

constraints on your lives together.

In light of what your loved one is going through, some of your

feelings might seem petty, selfish, and hurtful. But they are normal.

Obviously you may not want to share these fears or feelings with

your husband or wife who is on dialysis. Your partner is already cop-

ing with all he or she can handle. But keeping these emotions re-

pressed will be a disservice to your own well-being and eventually to

your marriage. They will keep you from regaining a solid footing.

If you find yourself overwhelmed at the thought of being alone,

having a difficult time, or feeling sorry for yourself, it is important to

try to talk to somebody. As we said, you may not want to burden

your husband or wife. Your children may already be coping with the

mortality of their parent. It is better to seek out a professional, a spir-

itual adviser, or a close friend whom you’ve found helpful in your

life. In either case you might not always be able to approach those in

your innermost circle because they are being affected too. Rather,

you must go outside the circle to someone who has a fresh perspec-

tive. You may find that having an outside resource enables you to air

your worst fears and emotions.

Finding someone with whom you can share and work through

these emotions is a healthy and helpful response for a spouse of a dial-

ysis patient. And it will help you come to terms with your new role

and the resulting changes in your marriage. But when you seek an

outside resource, do so constructively with the help of someone who

is not a threat to your marriage. In Keith’s case, he not only sought

out someone who could reaffirm his virility, but he also sought out

a sounding board, someone he could confide in. Unfortunately his

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The Impact of Dialysis 145

choice of confidante was destructive to his marriage. A better route

would be to proactively find someone who has no other agenda than

to be helpful to you. This would include but not be limited to help-

ing you improve and strengthen your marriage in the face of dialysis.

Just as you may have to seek out help, you may also have to seek

out education. Margie found that when Daniel first started dialysis

she also had a great deal to learn about the treatment. She encour-

aged the medical professionals to view her and her husband as a

team, keeping her in the loop. Over the years she has continuously

learned more about dialysis. According to her, you can never reach a

point where you know all there is to know. Education about dialysis

evolves and is ongoing. And in the case of Margie, dialysis has be-

come as much a part of her life, albeit in a very different way, as it is

a part of Daniel’s. How she plans her days, weeks, meals, and vaca-

tions has been altered to some extent by his dialysis. The more

knowledge she gathers about his treatment and disease, the more

confident she becomes in coping with her fears and feelings toward

the changes that have affected her life.

Let’s Talk about Sex

Dialysis is life changing and it also can affect one’s sexual life. Keith

didn’t hold back when describing the difficulties he and his wife were

facing with regard to sex. And as he surmised, they cannot be the only

ones suffering from these problems. There are many other dialysis pa-

tients and their spouses who are challenged by one partner’s sudden

lowered interest and sex drive. With dialysis patients there are two pos-

sible causes for this decline in sex drive. One is physical. The other is

psychological. Physically, dialysis and the buildup of fluids and toxins

between sessions can be draining. A person may truly have less energy

than he or she had before the kidney failure. This is especially true on

the days that an individual undertakes dialysis. Certain medications for

high blood pressure or diabetes may also diminish sexual drive. Aside

from an overall diminished interest in sex, these physical burdens can

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146 D i a l y s i s w i t h o u t F e a r

sometimes cause erectile dysfunction (ED) in men, the inability to

achieve an erection, or in women vaginal dryness, vaginal pain, and/or

an inability to achieve orgasm. Additionally PD patients may feel en-

cumbered by an abdomen filled with fluid, which can make sex un-

comfortable and potentially result in medical complications. This is one

physical obstacle that can be resolved relatively easily by draining fluid

before engaging in sex and filling shortly thereafter.

Psychologically, a dialysis patient may be contending with the

blues, which can diminish drive. One may feel less attractive as a

person and more self-conscious about physical appearance and the

location of the access. Like Keith, one may worry about how the ac-

cess looks and if the access can be disturbed or harmed during sex.

This increased self-consciousness can inhibit an individual’s desire to

be sexually active. Alternatively, a spouse may suddenly be afraid to

touch or hurt a partner’s access. A spouse may also suffer increased

inhibitions by his or her sense that the dialysis patient is fragile and

may “break.” These psychological barriers are all common, real ob-

stacles that couples may face.

That is the bad news. Now for the good news: You do not have to

kiss your sex life good-bye. As a couple you can overcome these chal-

lenges. Neither a dialysis patient nor spouse need suffer in silence.

There are a number of crucial and basic steps to remedying the

situation:

• Open up and talk to each other. If you aren’t in the habit of

discussing your sexual satisfaction with one another this might

be hard to do, but you have to find a way to have a nonaccusa-

tory or defensive dialogue about your needs. If this is a truly

uncomfortable topic of discussion for you, then you may need

to seek help from a professional counselor who can help initi-

ate the discussion. This is the critical step to finding mutual

satisfaction in the bedroom. Shyness around the topic must be

overcome.

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The Impact of Dialysis 147

• Once you’ve determined what each person needs, find a way to

compromise and meet halfway. In many relationships, even

those that aren’t contending with a chronic illness, there is often

a difference between sexual drives. The challenge is to try to find

a compromise that both parties can live with. For example, if

one person would be content to have sex several times a week

while another would be content to have sex once a month, then

the middle ground might be to have sex once a week.

• Redefine sex. The key is to think about when you first woke up

to be a sexual being. You need to think about what makes you

feel sexual. There are many ways to share intimacy with a partner

other than actual intercourse, but you have to be creative. For

example, alternative options may include kissing, cuddling, mas-

sage, mutual masturbation, or oral sex. To protect the access, dif-

ferent positions may need to be explored. A spouse should be

able to articulate what might be appealing and satisfying while at

the same time seeking options that won’t be uncomfortable or

overly demanding on his or her partner.

• Pursue medical options if need be. For men, ED, also known as

impotence, can be resolved regardless of its cause, most of the

time. To begin with, a comprehensive examination by a urologist

can help uncover the root cause of the problem. Depending on

his or her findings, a urologist may recommend one of several

treatments that may include changing medications; couples

counseling; oral medications including sildenafil (Viagra), var-

denifil (Levitra), or tadalafil (Cialis); hormone replacement ther-

apy by gel, patch, or injection intended to raise abnormally low

hormone levels; injectable medications into the penis that create

an erection, such as alprostadil, papaverine hydrochloride, or

phentolomine; vacuum device therapy, which maintains an erec-

tion through the use of vacuum pressure and bands; or as a last

resort, surgery and the use of a penile prosthesis. A urologist will

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148 D i a l y s i s w i t h o u t F e a r

likely start with the least invasive treatment first and recommend

more aggressive treatments should the initial ones fail.

Now to focus on medical options for women, a urologist or, in

some cases, a gynecologist can help a woman figure out what is caus-

ing the problem and how best to resolve it. The doctor may recom-

mend treatments such as changes in medications, in routine, or in

environment; couples counseling; over-the-counter lubricating jelly

such as KY Jelly or Replens designed to diminish vaginal dryness and

pain; kegel exercises to strengthen pelvic floor muscles; hormone re-

placement therapy via estrogen preparations; vibrating aids; EROS-

CVD, a device that places a suction cup on the clitoris to increase

arousal and lubrication; or vaginal dilation with a vibrator or tam-

pon multiple times daily. Again, most doctors will recommend the

least invasive treatment first.

One nephrologist told us that he’s had several male patients in-

quire about medications for their sexual drive. But he said he has

never had a female patient approach him about sexual problems or

pharmaceutical options. Furthermore this physician told us that

unless approached he never inquires about the health of his pa-

tients’ sex lives. When it comes to sex, he leaves it up to the patient

to approach him. Bottom line, if your husband or your wife truly is

waylaid by a lack of libido, he or she may want to explore med- ical

treatments. A patient should not be embarrassed or ashamed to

broach this topic with a doctor. And, it is not uncommon for

nephrologists to refer patients directly to urologists when dealing

with these issues.

In time, you will find yourself much happier and more sexually

satisfied for having addressed these issues rather than sweeping them

under the bed. Your self-consciousness will diminish and you may

even find that like many other PD or hemodialysis patients your

catheter or access becomes barely noticeable during sex. Instead it

becomes just another part of your body.

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The Impact of Dialysis 149

And Baby Makes Three

When discussing sex we’d be remiss simply to address it as a pleasur-

able part of life without acknowledging that it is also a means of pro-

creation. If you are on dialysis or involved or married to someone on

dialysis, you may be wondering whether you will be able to have

children. Sometimes men on dialysis have a lower sperm count. If you

are planning to start a family you may want to have yours checked.

However, if you are a male on dialysis and you find that everything is

in order anatomically speaking, there is no reason you could not im-

pregnate a woman and be a wonderful, loving father. This is also true

if you don’t want kids—and everything is working in that

department—so a word to the wise: take care! Your kidneys may

have stopped working, but for many men they have little impact on

the ability to parent. Yes, as a father on dialysis you might be a bear

sometimes, tired others, and you’ll have a rigorous schedule. But this

describes most dads we know. Hopefully you’ll have a lifetime to

compensate for these shortcomings, and your child won’t know any

life that is different.

If you are a female on dialysis, bearing children may be a little

trickier but don’t despair and don’t immediately count conception

out. While you’d automatically be considered a high-risk pregnancy, if

you are interested in having a child you should speak with your

doctor, get several opinions, and weigh your options carefully. As is

true with the decision to pursue a transplant, every woman is differ-

ent based on her particular set of health factors. We don’t want to

provide false hope, but we have heard of several women who have

successfully conceived and delivered healthy babies while on dialysis.

We’ve even spoken to one, Leila, and marveled at her tenacity.

If you’ve ever been pregnant you know it isn’t always a walk in the

park, but pregnancy while on dialysis requires an entirely different

level of commitment. Leila was somewhat of a celebrity in her dialy-

sis clinic. Everyone had heard her story and knew what lengths she’d

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150 D i a l y s i s w i t h o u t F e a r

gone to in order to have a child. Before going on dialysis Leila al-

ready had one child. Soon after she began dialysis, she and her hus-

band tried to have another. Unfortunately she had two miscarriages.

The doctors informed her that she’d likely never have any more chil-

dren and one physician even advised that she have her tubes tied as a

preventive measure of protecting a new kidney, if and when she re-

ceived a transplant. Leila chose not to follow this advice. As it turned

out, she was fortunate enough to receive a transplant, but after a few

years it failed.

Upon returning to dialysis her doctors told her that there was ab-

solutely no way she could conceive as a result of having taken the

immunosuppressant medications needed to protect her previous

transplanted kidney. Hearing this news, Leila and her husband

stopped using any type of contraception. Sure enough, to their great

surprise she quickly became pregnant.

For the duration of her pregnancy Leila dialyzed at her clinic three

hours a day, six days a week, taking a break only on Sundays. By

ensuring that she dialyzed every day, the doctors hoped to avoid a

toxic buildup in her bloodstream large enough to impact the fetus

negatively. Leila did deliver the baby prematurely, but his lungs had

developed sufficiently that he was able to breathe on his own. Eight

years later she has a healthy, rambunctious boy who has her constantly

on the go. When asked if it was worth it, she replied wholeheartedly

without a doubt it was and she would do it again. And when asked if

dialysis got in the way of her ability to be a good parent, she re-

sponded, “Not at all.”

Helpful Ways to Be Supportive

Being able to make it through such a laborious pregnancy surely was

a team effort on the part of Leila and her husband. Her husband

likely sought out creative ways to show his love and support during

those long weeks and months leading up to the delivery. Although

most people on dialysis aren’t in the process of creating another life,

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The Impact of Dialysis 151

all people on dialysis are being stretched physically. Likewise, there

are many small gestures that a spouse can do, throughout the dura-

tion of dialysis, to be supportive and helpful to their loved one. We

share with you here a few of the loving gestures we’ve discovered over

the years.

1. Learn about the dialysis diet and how to shop or even cook for

the diet. Adapting recipes and finding creative ways to concoct

food that your loved one will enjoy is one of the most loving acts

of kindness that you can express.

2. Inquire about the dialysis clinic and the people there. Going to

dialysis is like going to work. It is a whole world filled with charac-

ters and stories. Showing interest in where your loved one spends a

great deal of his or her time is a nice way of expressing interest.

3. Give gifts that show you care. Go out and buy small drinking

glasses and replace the massive cups you have in your kitchen

cabinet. Find a pretty jar in which your spouse can keep phos-

phorous binders. In Margie’s case she found two jars one marked

with an X the other with an O. Other thoughtful gifts are a cozy

washable blanket that the person can take to the clinic, a beauti-

ful pill box for some of the medications, or an MP3 player for

keeping the individual musically equipped while dialyzing.

4. Visit the person at dialysis. You certainly don’t need to go every

time or for entire sessions. But popping in on occasion, espe-

cially as a surprise, can be like a ray of sunshine.

5. If your loved one has reached a significant dialysis milestone ac-

knowledge it and recognize the person’s courage and persever-

ance. For example, to mark the five-year anniversary of Daniel’s

start of dialysis, Margie asked all of his siblings and children to

write and send cards. She surprised him with the cards and a gift

from the whole family—a paperweight inscribed with the

phrase, “You are a star.”

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152 D i a l y s i s w i t h o u t F e a r

6. Determine whether there is a time when a little extra tender lov-

ing care can go a long way. For example, when Daniel returns

from dialysis in the evenings Margie makes a concerted effort to

be home and to have a good dinner waiting. This schedule isn’t

applicable to many dialysis patients but it illustrates how Margie

tries to provide a little extra comfort when Daniel needs it most.

7. Try to give as much ownership of health and health care as pos-

sible to your spouse. As we’ve said earlier in the book, patients

often do better when they feel some semblance of control over

their care. For example, Margie used to put lidocaine on Daniel’s

access before every dialysis session. Then she realized that he was

perfectly capable and should be doing it himself. Sometimes it is

easy to take the caregiving too far. Don’t enable your spouse to

become more of a patient than necessary.

8. Feel free to express benign disinterest. By this we mean, you can

listen to your partner complain about dialysis but do it pas-

sively, almost as if you are listening with one ear. The goal is to

listen but not add fuel to their complaints. Your loved one may

not realize it, but this is often the most emotionally helpful

response.

9. If you need to travel on your own for business or pleasure, show

you care from afar. Call after dialysis to see how the person is

feeling. Perhaps leave a card or a gift under his or her pillow as a

surprise. If you are in the habit of cooking for your spouse, make

some dialysis-friendly meals in advance. Bring a gift back with

you.

Taking Care of the Caregiver

Showing love and caring for your partner is important, but equally

important is taking care of yourself and creating boundaries. We’ve

already established that whether or not you consider yourself a con-

ventional caregiver, you are one. And the extent of your caregiving

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The Impact of Dialysis 153

responsibilities will vary depending on whether your spouse is con-

tending with complications, additional diseases, aging, or other issues.

It is important to realize that you are at a heightened risk to become

burned out, tired, sick, or depressed yourself.

To be able to care for your spouse, you simply cannot ignore your

needs. As Margie says, “You are running a marathon, not a sprint. In

order to make it to the finish line, you have to pace yourself.” First, de-

termine what you need to do to recharge your batteries while away

from your spouse from time to time. Rejuvenating activities may in-

clude massages, walks, visits to a salon, going out with friends, going

to the movies, exercising, taking a mini-solo vacation, or even a longer

vacation if time permits. Whatever your pleasure, make sure to find the

time and to do it without your spouse. You will be better off for it,

better able to show support, and better able to put up with your hus-

band or wife’s “not so good days.”

As Keith noted, on those bad days a caregiver often serves as a bit

of a “punching bag.” Sometimes the spouse of a dialysis patient, by

virtue of proximity, is the recipient of some of the verbal blows, sulk-

iness, and crabbiness that a patient can’t help feeling from time to

time. This is not a lot of fun, especially when you feel like you’ve

done nothing to deserve this ire. But if you are taking care of your-

self you’ll be less likely to let it bother you. The moods will pass, and

remember what Margie says with a smile, “Go with the flow even in

a sewer.” Meaning that even during the cruddiest times of dialysis

you just have to move with it rather than fight it. Or if that saying

doesn’t inspire you then her alternative mantra is “There is no de-

fense against kindness.” Even if your significant other is treating you

poorly for no apparent reason (other than the fact that he or she is

completely fed up with dialysis and you happen to be the only one

within shouting distance), if you treat your spouse kindly, your

kindness will be like a salve that soothes his or her anger. Eventually

the person won’t be able to help reciprocating. However, this ability

to go with the flow and give kindness even where there is initially

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154 D i a l y s i s w i t h o u t F e a r

none in return hinges on your ability to constantly build and rebuild

yourself back up again so that your defenses are strong.

The Second Wave: Those Who are One

Step Removed

The majority of people within a patient’s world are far more im-

mune to the highs and lows of dialysis, and they will fall into the cat-

egory of being one step removed. For example, this may include

adult children, good friends, or siblings—just about anyone who is

close to the patient but who does not live under the same roof. In re-

ality the majority of people in this group generally show little inter-

est at all in dialysis or a patient’s life on dialysis. People live busy,

stressful lives and often just ask how the patient is and go on to other

topics. Some are afraid to ask about dialysis. If they do ask additional

questions they are often misinformed or ignorant about the treat-

ment. Sometimes their concerns or questions are tinged with an air

of surprise that the patient is still alive and able to get around so well.

While it may sound harsh, the truth is that most people in this group

tend to be fairly clueless and rarely make an effort to educate

themselves. Sometimes this may be frustrating to the patient or those

on the front lines, but it is a reality of life. Perhaps, for those who

know very little about kidney failure and who take the time to read

this book, they will arrive at a new level of empathy and inter- est. If

you find yourself within this group of individuals and, after reading,

wish to be even more in tune with your friend or loved one’s life, we

have a few recommendations of gestures that would likely be very

well received and much appreciated. If there were such a thing as

“dialysis patient etiquette” it would go something like this:

1. First, go and visit your friend, sibling, parent, or other loved one

at dialysis. Don’t be scared or deterred by the tubes and needles.

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The Impact of Dialysis 155

Remember that many dialysis patients are able to walk out of the

clinic and lead very good lives! A visit may be uncomfortable at

first, but it will be very illuminating. More important, it will en-

hance the relationship between yourself and the dialysis patient. All

three of Daniel’s children and his two oldest grandchildren have, at

different times, visited him at dialysis. While some were nervous at

first, Daniel asserts that each visit was an eye-opening experience

that enabled the visitor to gain a more realistic per- spective, and as

a result be more empathetic.

2. Before you visit, ask permission. Of course, there is a fine line

between empathy and pity. Both Daniel and Margie acknowl-

edge that they are proud and do not want to be pitied, or viewed

as having or being less than anyone else. For this very reason,

some people may be hesitant to allow a person other than a care-

giver to see them dialyzing. As an example, we met one young

woman who refused to allow her boyfriend of six months to

visit her at the clinic. She didn’t want him to picture her in that

light. She wanted him to view her like he would view anyone else.

As an aside, we feel she was entitled to deny her boyfriend’s request

to visit until she felt the relationship was at an appropriate stage of in-

timacy and comfort. But we also believe that if and when she was to

become confident enough in the strength of the relationship, allowing

him to visit her while dialyzing would only enhance their bond. He

would be able to learn about an important but not completely defin-

ing facet of her life. And as a result he would have a window into her

vulnerability and courage. In theory, if her boyfriend was a “keeper,”

these insights would only draw him closer.

3. Don’t just visit the patient once, never to return. For many pa-

tients, dialysis is a big part of their lives for many years. If that is

the case, you may want to pop in now and again. At the very

least visit once a year. A short visit requires minimal effort on

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156 D i a l y s i s w i t h o u t F e a r

your part, but will likely leave a large impression on the person

you are visiting. You don’t need to stay for an entire treatment,

but even a half an hour will mean a great deal to the patient and

will be a considerate expression of your ongoing love and

concern.

4. Occasionally ask the person on dialysis about his or her treat-

ment. Asking patients about the clinic and the people there is a

gesture of genuine interest in their life. After all, they do spend a

lot of time there. Similarly, it is nice to ask dialysis patients from

time to time how they feel or how a session went. While they

don’t want to be completely defined by dialysis, they don’t want

it to be ignored either. By asking, you are acknowledging a big

part of their lives.

5. Request a complete, written list of dietary restrictions. When a

person on dialysis comes to your home, make an effort to serve

or have foods on hand that are good for him or her to eat. Try to

steer clear of cooking unhealthy options, or at the very least pro-

vide an alternative. If you understand the diet, you will be in a

position to be more supportive and less likely to inadvertently

sabotage a person’s attempts to comply with the diet.

6. Be understanding that dialysis trumps any other activity. If you

want a dialysis patient to be present at a certain event, you must

plan the affair around their dialysis schedule. Daniel and Margie

have taught their kids that every day is special and no day is spe-

cial; in other words, all activities and events must be planned

around Daniel’s schedule. If Daniel is vacationing with his fam-

ily and has to dialyze on New Year’s Eve, then the family can cel-

ebrate New Year’s the day before. Eventually one becomes so

accustomed to accommodating the ebb and flow of dialysis that

one barely remembers life before dialysis.

7. Try to assist the caregiver if the need arises. During times of ad-

ditional stress, if medical complications arise, check in on both

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The Impact of Dialysis 157

the patient and the caregiver. When the caregiver is taking a

well-deserved break, help out by calling or visiting the dialysis

patient more frequently.

8. Take the time to express appreciation and gratitude to the care-

giver for all that he or she does to help the patient—someone

who positively influences and impacts your life—keep on keep-

ing on.

If you are among the circle of relatives and friends of a dialysis pa-

tient and are able to take these suggestions to heart, you will find

yourself much more enlightened about and comfortable with dialy-

sis and all that it involves. Most important, by pursuing these sug-

gestions, you will make it abundantly clear to the person on dialysis

that you care about what he or she is going through.

The Third Wave: Acquaintances

and Strangers

Of course an improved understanding of dialysis can enhance an al-

ready cohesive bond between friends or family. But what about peo-

ple that we aren’t close to in the least? Do they really need to know

that we or someone we love is on dialysis? Probably not. Every en-

counter depends on the context. If you are visiting the emergency

room and are meeting a nurse for the first time, then, yes, please do

tell him or her that you are on dialysis. But if you are introduced to

someone at a barbecue, then there is no need to talk about your

health. There are so many other interesting things to talk about, and

if avoidable, it would be nice not to be referred to as “so and so . . .

he’s (or she’s) on dialysis.” This goes for caregivers too. You don’t need

to be known as “so and so . . . his wife (or her husband) is on dialysis.”

Stand out on your own merits and interests. In time, after someone

has gotten to know you a bit better then you can let them

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158 D i a l y s i s w i t h o u t F e a r

know about dialysis, but first let them get to know the other aspects

of your life.

As an example, we mentioned that Margie occasionally takes trips

on her own. She started out by telling fellow vacationers about

Daniel’s dialysis and why she was vacationing alone, but her closest

friend cautioned her against this. “For one,” her friend said, “you

need a complete break from the world of dialysis. And for two, there

is no reason to go into it.” Now Margie chooses carefully if and when

she tells someone during the course of the trip. She only men- tions

it if she feels it is completely appropriate. When asked how people

react she says, “Most frequently they are kind of fascinated and are

surprised that I’m so relaxed about dialysis.” Most people whom she

confides in usually don’t know much about dialysis. If they express

further interest, she considers it an opportunity to teach them a little

about renal failure and dialysis.

On the other hand, some people aren’t nearly as receptive. Dial-

ysis patients may threaten some individuals who are afraid of ill- ness

and these people will be more likely to shy away. Do not pursue

them. You will only hurt yourself if you pursue them. Some people

are just like that. You cannot change them nor should you try to. If

you are tempted to, stop and ask yourself, “What do you get when

you continuously hit your head against a wall?” A headache! Really

it’s not worth the effort. Margie and Daniel both say they have

learned not to take these rebuffs to heart. They sim- ply think of how

blessed they are to have wonderful friends, and then they move on.

To return to our previous analogy of the rock splashing down into

water, we’ve now addressed three of the waves that ripple from the

center outward: the caregiver; those who are one step removed; and

last, acquaintances and strangers. Regardless of which ring you fall

into, or if you are the center of the commotion yourself, the

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The Impact of Dialysis 159

suggestions in this chapter are intended to help you brave the wake of

dialysis and the disturbance that it may cause to your relationships.

Human beings are remarkably flexible, and like water settling around

a rock, most relationships eventually adapt to the unwelcome imposi-

tion of dialysis.

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Eight

Work and Financial

Implications of Being

on Dialysis

n most social situations when we meet a new person, one of

the first questions we ask one another is “What do you do?” For

most people what you do is considered to be a big part of who you

are. When someone begins dialysis, one of the first concerns usually

is “What do I do now ?” And in keeping with the logic that what we

do is such an integral part of our identity, it is a safe assumption that

wondering “What do I do now?” is really just another way of won-

dering “Who will I be now?” The thought of having to adopt a new identity, one that includes

the response, “I do dialysis, or I do disability” isn’t really a self-portrait

that many of us would be comfortable with or take pride in. This

sudden loss of an answer to what had previously been a very straight-

forward question can be very challenging. For many people new to

dialysis the idea of who they were and where the future was going to

take them has unexpectedly changed.

In addition to these weighty questions of identity come practical

concerns about finances. Soon after “what do I do now,” the ques-

tions of “how will I survive,” or in the case of a breadwinner, “how

will my family survive if I can’t work,” almost surely follow. Dialysis

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patients may wonder how they will pay the bills or if they will be

Work and Financial Implications of Dialysis 161

able maintain the lifestyle that they’ve built based on their previous

level of earnings. They may worry if they will be able to afford to

send their kids to college, pay for the children’s braces, or buy a

home.

Of course, all of these questions may invoke worry and anxiety. If

they are racing through your brain, don’t panic. As we mentioned at

the beginning of the book, one of the biggest societal misperceptions

surrounding dialysis is that a person on dialysis is no longer able to

work or study. As one renal care social worker said, “I have known

many people who assume that once they require dialysis they can no

longer work. I often felt that it was my responsibility to challenge

that assumption.”

This particular social worker had been working with dialysis pa-

tients and transplants recipients for over two decades. During that

time she had seen people who were battling kidney disease work in a

variety of jobs and fields. She saw everyone from dishwashers, to

landscapers, to construction laborers, to factory workers, to business

professionals, to doctors who worked and dialyzed. She told us,

“The more time you spend at home sitting in your house, the worse

you feel. The more depressed you are, the less energy you have. This

is the reason that the articles I’ve read over the years strongly support

the idea that people who continue to live their lives as close as possi-

ble to life before dialysis do better. Unfortunately, there are certainly

people who can’t continue to work and I help them through that pro-

cess. But when people start dialysis, I try to set up the expectation

that they will work and if they can’t then we’ll figure it out. At least I

want them to see that somebody expects them to work.”

It may take time, to sort out the realities of what one can or can-

not do while on dialysis, but in the interim our advice would be to

try not to make any premature, large life changes immediately after

starting dialysis. Take a month off if you have to, but plan on return-

ing to work. For some people that may mean returning full-time; for

others that may mean working part-time, volunteering, or being

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162 D i a l y s i s w i t h o u t F e a r

active in church or synagogue. Time will tell, but first allow the dial-

ysis a grace period to take effect and allow yourself time to begin

feeling better.

When first starting dialysis you may feel so sick and so debilitated

that it may be very hard to imagine ever feeling well enough again to

hold down a job. However, how you feel initially on dialysis is rarely

representative of how you will feel in the long run. Or alternatively

you may be quick to think, if my life will be shortened shouldn’t I

enjoy every last minute, and is work really how I want to spend my

time? But, as we’ve said many people live decades on dialysis. You do

not yet know what the future holds so don’t be so quick to assume

the worst. Give yourself the time to be able to separate the forest

from the trees before prematurely starting disability paperwork.

This is not to say, that the task of working and juggling dialysis is

easy. Many times it is not. In this chapter we will discuss a range of

issues surrounding work and finances that arise when someone is on

dialysis. We will discuss a host of topics such as the type of informa-

tion you should and should not divulge during a job interview, as

well as information about health insurance programs, protective fed-

eral laws for people with disabilities, financial assistance programs,

and flexible work schedules. Our aim is to help you gain a much

greater understanding of how to make work work for you.

Maria’s Story, a Hemodialysis Patient’s Perspective

One young lady whom Susan interviewed was successfully doing just

that. Maria, a young twenty-year-old Hispanic woman was in the

midst of dialyzing at 5:30 a.m. when she cheerfully greeted Susan

from her chair. Susan, unaccustomed to such an early work schedule,

nursed her extra-strength coffee, appropriately named “Fog Lifter,” as

she pulled up a stool and sat beside Maria and listened as her story

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Work and Financial Implications of Dialysis 163

unfolded. Maria spoke of how four years prior, as a sophomore in

high school, she went into renal failure. Before being diagnosed, she

complained of constantly being tired, which her mother simply at-

tributed to, “typical teenage laziness.” But when Maria began cough-

ing, her mother grew concerned and took her to a local clinic. The

paleness of Maria’s skin, the bags under her eyes, and the whiteness of

her fingernails were all telltale signs of anemia. To confirm his suspi-

cions, the doctor drew blood and a few days later Maria’s mother re-

ceived a call asking her to bring her daughter to the hospital right

away. Less than a month later, Maria began dialysis. Everything hap-

pened so fast, Maria said, “It really didn’t sink in for a long time.” As

Maria talked about learning to cope with her illness, finishing high

school while on dialysis, and deciding what to do next, Susan gleaned

a little of the situational and motivational challenges associated with

working—or in Maria’s case, studying—while on dialysis.

When you first began dialysis how did you manage to continue

school? “I started dialysis my sophomore year. I managed to finish my first

semester but then second semester and my junior year I was home

schooled. My senior year I returned to the high school. That year, I

would go to school and immediately after school I would come to

dialysis. When I was home schooled I dialyzed in the morn- ing and

then in the afternoon I would have school.”

Did you have an active social life through high school? “I had my close friends, but when I attended school at home, it

wasn’t the same. When I was home schooled I didn’t do much with

my friends. When I returned I was more involved and I think I would

have enjoyed a better social life if I’d stayed at the high school.”

Why did you or your parents decide to home school? “After dialysis I got tired and I just wanted to go to sleep. Initially

I tried to have dialysis, skip first period, and then arrive at school for

second period. But I found myself skipping several periods in the

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164 D i a l y s i s w i t h o u t F e a r

morning because I just wanted to go home and go to sleep. The

schedule was messing with my grades so my mother thought it would

be better for me. I didn’t want to leave, but it was better.”

Did you consider changing your dialysis schedule to the evenings? “They didn’t offer a late schedule at my clinic at that time. I would

have had to switch clinics, which I didn’t want to do.”

Now that you have graduated what are you doing? “I’m studying to be a pastry chef. I’m enrolled in a one-year pro-

gram at the Culinary Academy. I wasn’t sure initially if I wanted to

do culinary or pastry, but I love decorating wedding cakes.”

What is your current dialysis and school schedule? “I dialyze from five a.m. to nine a.m. I return home to rest and

then I go to school from five p.m. to ten p.m. The schedule works

well for me.”

What do you think differentiates people who do well on dialysis ver-

sus people who become stuck in a rut? “I guess the main difference is whether you can just deal with it.

The people who can say, ‘Yeah I do dialysis but I do other stuff too,’

they seem to do well. And just because you are on dialysis doesn’t

mean you have to stay put. We have to complete an externship for

three months before we graduate. I’m thinking about doing mine in

Paris.”

Are there any benefits to being on dialysis? “Yes. You can get financial assistance for school. There are places

you can get grants. There are benefits that exist specifically for those

who are disabled.”

What has been the biggest challenge for you while on dialysis? “I think what I mentioned before, learning to deal and adapt to

the situation. At first when I went on dialysis I thought, ‘Oh, I’m not

going to be able to do what I want to do.’ In fact, after I graduated

from high school I should have started culinary school right away.

But I didn’t. I don’t know why. I would just go home after dialysis

and that was my day. I would do that every day and every day that

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Work and Financial Implications of Dialysis 165

was it. I didn’t do anything. Eventually I just got tired and thought

‘What am I doing? ’ Life was just passing me by. An entire year went

by and I thought, ‘What am I doing here living at home with my

mom?’ So I enrolled in school because eventually I want to be living

on my own and doing stuff with my life.”

Maria went on to tell Susan about her boyfriend, going to the movies,

spending time with her grandfather. She explained that she was

awaiting a transplant but had been on the list for only a year. Aside

from being on dialysis, Maria struck Susan as a very poised, normal,

twenty-year-old woman who had managed to work around the

scheduling difficulties and physical languor of dialysis. Maria was a

perfect example of the countless numbers of dialysis patients who,

despite the physical challenges of the treatment, manage to cre- atively

carve out their professional path. Rather than letting her in- ertia

settle in permanently, Maria discovered a vocation she thought

would suit her talents, tapped into the financial resources that were

available to her, and pursued her professional interests. Like any

other twenty-year-old, Maria’s future was filled with possibilities.

Practicalities of Working and Studying while on Dialysis

As we saw with Maria, her school life did shift dramatically after she

began dialysis. At first she tried to continue going to school as she

had normally done, with the exception of skipping first period. But

because dialysis sapped her energy she was unable to show up to

school on time and maintain her grades. Home schooling wasn’t the

ideal option, but it enabled her to continue her studies and get the

rest she needed. If only her dialysis center had offered an afternoon

shift, she would have been able to go to school in the morning and

dialyze after.

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166 D i a l y s i s w i t h o u t F e a r

Unfortunately dialysis centers don’t often have the schedules that

best mesh with an individual’s work or class needs. And, as was the

case with Maria, many people often must mold their work or school

schedules around the schedule mandated by their dialysis center as

opposed to the other way around. Or—in the case of peritoneal dial-

ysis, which offers greater flexibility in terms of scheduling—a patient

may need to carve out time and space during the workday to per-

form a manual exchange. Unlike many people starting dialysis, Maria

had yet to join the workforce. But many folks who have to go on

dialysis are already employed. What if they must suddenly make some

changes to accommodate their dialysis schedule? What will their em-

ployer say? What will their employer do?

Know Your Rights

Individuals on dialysis are considered to be individuals with disabili-

ties as protected by the Americans with Disabilities Act (ADA.) This

means that you have certain rights that your employer must honor.

As stated in the U.S. Department of Justice’s Guide to Disability

Rights Laws, this act “Requires employers with 15 employees or more

to provide qualified individuals with disabilities an equal opportunity

to benefit from the full range of equal-employment opportunities

available to others. For example, it prohibits discrimination in recruit-

ment, hiring, promotions, training, pay, social activities and other

privileges of employment. It restricts questions that can be asked

about an applicant’s disability before a job offer is made, and it re-

quires that employers make reasonable accommodation to the known

physical or mental limitations of otherwise qualified individuals with

disabilities, unless it results in undue hardship.”1 Before approaching

your boss, at the very least you know legislation exists to protect you

and others like you. You are entitled to make certain requests that will

enable you to both work and dialyze. In general, you should feel more

confident in your rights.

Many employers when approached about creative scheduling or

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Work and Financial Implications of Dialysis 167

finding space for a peritoneal exchange in the middle of the day are

willing to accommodate these requests. Occasionally though, an em-

ployer may not be so receptive. If need be, you, your social worker,

or your physician may need to draft a letter referencing the ADA. As

one social worker said, “I have used the ADA as a threat, although

I’ve not had to get involved with recruiting lawyers to advocate for

patients. Any time you reference federal law it does raise an em-

ployer’s awareness.”

We spoke with a patient who found himself in just such a situa-

tion. When he first started dialysis he was working for the city col-

lecting recyclables. This patient’s nephrologist felt that the job would

be too strenuous for him and recommended he try to switch to an al-

ternative position working within the same municipal department.

So this gentleman approached his supervisor and asked for a “reason-

able accommodation.” The supervisor refused and suggested instead

that the employee resign and go on disability. The gentleman con-

fronted his supervisor saying that he thought he was being unfairly

discriminated against. The supervisor retorted that he didn’t really

care what the employee thought. So, knowing his rights, this gentle-

man filed a complaint with his state’s commission on human rights.

Three days later he received a call from his employer offering him a

position in the customer service department where he went on to work

for several years. And as a result, the complaint was dismissed.

Unfortunately we’ve also been told that there are ways for em-

ployers to skirt the rules set forth by the ADA. Rather than refusing

certain requests, some managers will accommodate them. But they

will intentionally make the work environment hostile and unduly

challenging until ultimately an employee feels that the only recourse

is to resign and go on disability. We sincerely hope that you do not

find yourself in an adversarial position with your manager or em-

ployer. However, if you feel that an employer is directly violating your

rights as defined by the ADA, you should strongly consider pursuing

legal recourse.

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Know Your Rights as a Family Member

What if your spouse, parent, or child goes on dialysis and you must

help take care of him or her? What are your rights then? The U.S.

Department of Labor’s synopsis of the Family and Medical Leave

Act (FMLA) states that covered employers (essentially employers

with fifty employees or more for twenty weeks out of the year or

public employers with any number of employees) “must grant an el-

igible employee up to a total of 12 work weeks unpaid leave during

any 12 month period for one or more of the following reasons,”2

which include, “To care for an immediate family member (spouse,

child, or parent) with a serious health condition.”

Most people think of FMLA in terms of having an ill or dying rel-

ative and needing to take two months off. What many people do not

realize is that, provided you are an eligible employee, you can also

use FMLA intermittently. For example, if you have to take a family

member to a doctor appointment once a week you can use the FMLA

time for those weekly visits and protect your job while still caring for

your family member. Your employer is not required to pay you for

this time off and every employer is different in terms of how much

of the twelve weeks they will provide as paid leave versus unpaid

leave. But at the very least, you will know that your job is protected

under the law.

To Tell or Not to Tell, That Is the Question

When Maria ultimately graduates from culinary school and begins

interviewing for positions as pastry chef, what must she tell a

prospective employer during the interview process? Does she need to

explain that she is on dialysis? The only question that an employer

may ask about your medical condition during the interviewing pro-

cess is if there is anything about your health that prevents you from

doing the job. As one social worker said, “I use the example of some-

body who has a bad back and is interviewing to work on a loading

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Work and Financial Implications of Dialysis 169

dock for UPS. In that case the interviewee must disclose that infor-

mation.” She went on to explain that anything that does not prevent

you from doing the job does not have to be disclosed until after an

offer has been made. At that point, some jobs require a brief physical

or a drug urine test. This would of course bring your renal failure to

light. If you no longer make urine, ask your physician to provide a

letter explaining your kidney failure and willingness to provide a

blood or hair sample instead. Under the ADA a prospective em-

ployer should be receptive to this alternative suggestion.

But remember, early in the interviewing process you need not

disclose anything. As a litmus test ask yourself, “Will leaving my job

half an hour early to get to dialysis prevent me from doing the job

and doing it well? As an alternative, could arriving at work ear- lier

in the day, or working from home later at night still enable me to do

the job and do it well?” If the answers to these respective questions

are no and yes, then you need not say anything while interviewing.

Sometimes people will be interviewing for a position and will

want to know up front if the employer will be willing to work around

a hemodialysis schedule or to accommodate a peritoneal ex- change.

As we mentioned, in-center hemodialysis schedules are un-

fortunately not set up for the convenience of patients. In fact, most

of the dialysis schedules interfere with regular work day hours. Usu-

ally a patient can’t complete the earliest session (typically ending

around nine a.m.) in time to arrive before the work day begins nor

can a patient start the last session (typically beginning around four or

five p.m.) after the official work day has ended.

While interviewing, a person on dialysis may hope that the

employer will display a willingness to find a work-around to this

schedule. Interviewees may also be uncomfortable withholding infor-

mation that, while it won’t prevent them from doing the job, may start

them out on the wrong foot with their employer. Therefore they may

feel compelled (even though by law it is not required) during the

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170 D i a l y s i s w i t h o u t F e a r

interview process to reveal that they must dialyze and may require

flexible scheduling. But here is another way that employers can get

around the ADA. Upon hearing about the dialysis before extending

an offer, they may then choose not to hire the person on dialysis. If

smart, they certainly won’t say that they are choosing not to hire this

person because of dialysis although in many cases that may be one of

the reasons if not the reason. They will have another excuse. Bottom

line: if you divulge that you are on dialysis early in the process you are

taking a gamble on the integrity and open-mindedness of the em-

ployer, and in some cases, it may not pay off. So think very carefully

about what you choose to share with a potential employer and when

you choose to share it.

Flexible Work Schedules

Now let’s say you have taken a job or are already working and now

find yourself on dialysis. How might you be able to work around

some of the scheduling hurdles of dialysis? First, if you are doing

peritoneal dialysis, likely you will have some added flexibility as to

when you must perform a manual exchange. This is one of the perks

of peritoneal dialysis; it is not quite as rigid as having to be at a

hemodialysis center at a specific time three times weekly. Like a

newly nursing mother who returns to the workplace and must pump

her breasts throughout the day in order to maintain her milk supply,

you will require a quiet, clean, private place where you can perform

an exchange. And like a new mom, you’ll probably find your lunch

hour cut short in exchange for time spent taking care of business—

your business, that is. Again under the ADA your em- ployer must

make a good faith effort to find a place where you can perform an

exchange. And most will. They may not always be happy to do so,

but more often than not they will be accommodat- ing. And if they

aren’t, remember you, your physician, or even an attorney (if it

comes to that) may want to remind them of your rights.

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If you are on in-center hemodialysis, you may need to be a little

more creative with your time. Some patients will arrange with their

employer to put in extra hours either at the beginning or end of the

workday to compensate for a late arrival or early departure. Other

patients may commit to working extra hours in the evenings or even

while dialyzing by making themselves available via cell phone for

work conversations and by working via a laptop computer at the

center. As an example, teachers or professors will grade papers or

work on lesson plans while dialyzing. One physician on dialysis re-

turned all his patients’ calls and completed his dictation, allowing him

to have time to spend with his wife when the dialysis session was

over. Other patients may work out a part-time agreement to put in a

ten-hour workday Monday, Wednesday, and Friday. Then they take

Tuesdays and Thursdays off so that they can dialyze on those days in

addition to Saturday. We met with one gentleman who had been

working at an insurance company for only six months when he

suddenly became sick and had to go on dialysis. His manager allowed

him to move to this three days a week part- time schedule despite

his short tenure at the company. By switching to this schedule, the

gentleman was able to keep his benefits while having time to dialyze

on Tuesdays, Thursdays, and Saturdays. As one can imagine, he was

eternally grateful to his employer for being so flexible.

If you are not sure how best to approach your employer or what

type of plan might be well received, first meet with your social worker

to strategize. Social workers will have seen many different employer/

employee solutions and may be able to suggest a mutually beneficial

proposal that you would not have thought of on your own.

Best Odds Companies

Now let’s imagine a young woman on dialysis, such as Maria, but

instead of attending culinary school she is pursuing a degree in

business management. Once she has completed her degree, how

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can she determine which companies may have the best benefits and

be the most accommodating in terms of her dialysis? As far as we

know, a list of “Best companies to work for when dealing with a

chronic illness” does not exist. However, the seasoned social worker

we met earlier told us she typically encourages patients to look at

larger companies. Why? First, small businesses typically can’t afford

the health insurance premiums associated with chroni- cally ill

employees whereas a large business with hundreds or even

thousands of employees is generally impacted less by a handful of

chronically ill employees. While their premiums do go up, they are

better able to manage their overall costs due to economies of scale.

For this same reason, they also tend to have better insurance pack-

ages. So not only would you be more likely to get hired by a large

employer, but you would also be more likely to have better health

care benefits.

As for finding an employer that will be receptive to a flexible

schedule provided you get your work done, there are three lists you

may want to reference: Working Mother magazine’s 100 Best Com-

panies, Fortune magazine’s 100 Best Companies to work for in

America, and the Fortune 500. While you may have no interest in

maternity leave or on-site daycare, you can be assured that a com-

pany will not make it onto the Working Mother’s list if it is opposed

to flexible work arrangements. Hence, this is why you, a person po-

tentially seeking flexibility, would also find interest in such a list. As

for the Best Companies to Work for in America, each company may

have a variety of reasons for making it onto the list and not all may

pertain to your needs. But often Fortune will include brief explana-

tions as to why a company has been chosen and again you can look

for key words such as telecommuting, flexible schedules, job-

sharing, and the like. If you cannot find companies on either of these

lists that have operations in your home town or nearby, check out

Fortune 500. Of course, just because a company is big doesn’t mean

that it is flexible. But the Fortune 500 lists the largest 500

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companies in the United States and will help you to at least identify

whether there are any very large employers in your area. Last, when

seeking open-minded employers you may want to check with your

town or city to find out whether there is an office of people with

disabilities and if so, if they ever hold job fairs. If in fact they do, see

if you can get a list of companies that have attended in the past. Odds

are that those companies will be receptive and supportive of your

dialysis requirements.

Standing Out from the Crowd versus Fitting In

Most of us want to differentiate ourselves in the workplace based on

our work ethic, performance, and talents. In these cases, being seen as

“different” from the rest is often a positive. However, being perceived

as “different” because you are on dialysis is not a point of differentia-

tion that many people are comfortable with. Like the rest of the

population, co-workers can sometimes be very misinformed and

sometimes even scared of people on dialysis. Outrageous as it sounds,

you may run across a co-worker (although they may be afraid to say it

out loud or to you directly) who is most certainly wondering, “Is dial-

ysis contagious?”

This begs the question of whether you should share your med-

ical situation with your colleagues. There really is no easy answer to

this question and the quickest response would be, it depends. First

of all, do your colleagues need to know? Sometimes because of your

dialysis schedule you may need to do a little explaining in or- der to

avoid unnecessary resentment as to why you are receiving what they

may feel is preferential treatment. Or, if you are on a transplant list

you may need your colleagues to be informed of certain projects in

case you have to take a sudden leave and unex- pectedly put them in

charge. However, in some situations your co- workers really may not

need to know about dialysis provided you are getting your work done

and they are marginally or not at all affected.

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Second, you may want to contemplate whether you want your

colleagues to know about your renal failure and for what reasons. If

it is your first day on the job and you find yourself telling any- one

and everyone that you are on dialysis, stop and reflect about why you

want this attention. However, if over time, you form a close

camaraderie with specific co-workers you may feel that your renal

failure is a part of you that you are comfortable sharing. While

dialysis does not define you, it is after all a part of your identity.

Most important, if you’ve already proven yourself to be a capable

worker and colleague, sharing the fact that you are on dialysis can be

the best possible way to shatter many of the misperceptions that are

so prevalent among friends and co-workers. Some of the reasons

these old-fashioned stereotypes around dialysis and dialysis patients

persist are because dialysis patients are not always visible. The more

people who are on dialysis and are doing well choose to make it

known that they are on dialysis, the more likely it is that these per-

ceptions will change. So you do have an opportunity to make a pos-

itive difference, influence members of our society, and ascribe a more

accurate face to what someone on dialysis looks like. This is a lofty

responsibility that certain individuals are not comfortable with.

Whether you want this responsibility to teach others is entirely your

choice.

Last, you will likely find yourself in a number of work situations

that you might not be able to fully participate in such as pizza par-

ties, ice cream socials, or even happy hours—none of which are

particularly healthy options for a person on dialysis. You may think,

well, I’m better off just skipping the event entirely than having to

hear people say, “Hey you’re thin; how come you don’t want any

pizza?” or “You’ve barely touched your drink and we’re already on

our third round; don’t you like your beer?” Having a fail-safe an-

swer that you can fall back on while not having to go into a ton of

detail will make these situations far less stressful to deal with. And

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Work and Financial Implications of Dialysis 175

it will keep you from feeling like the perpetual odd man or woman

out. Participating in as many things you can that you find enjoy- able

is critical to your health. So if you enjoy hanging out with your

colleagues don’t skip these events. Instead, when and if a question

comes up, just pull out your stock answer such as, “I’m on a special

diet for health reasons.” Most people will have enough common

sense not to press further but if they do you can always say, “It’s

really not worth going into right now,” and then swiftly change the

subject to the latest in sports news or office politics. That will nicely

but firmly indicate that you don’t want to discuss it further.

The Alternative: Disability or Retirement

As we said earlier, some people really cannot work after going on

dialysis. For example, we met the wife of a patient had worked for

years as a cross-country truck driver. After going on dialysis he sim-

ply could not wed his demanding driving schedule to his equally

demanding dialysis schedule. His best alternative at the time was to

apply for disability. This can be very tough on a person emotionally

and financially, but people are remarkably resilient and eventually

patients do adjust. And just because you do not go to a job every day

does not mean you can’t volunteer or be involved in your com-

munity. There are so many opportunities to give back, even when on

dialysis, that going on disability doesn’t necessarily mean resign- ing

yourself to sitting on the couch all day. As one woman on dialy- sis

told us, “I hate to see people just go home and stay around the house

all day. That will kill you. You need to get a life and get in- volved. I

work at food banks and help senior citizens who are housebound. I

take them to their doctor’s appointments, help them around the

house, take them shopping, sit and talk with them. Do like I do. Go

help someone who is really sick. Or if you don’t want to do that,

volunteer at a library.” To identify volunteer opportuni- ties that

meet your needs you can start by checking the yellow pages

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and contacting nonprofit organizations in your area. Or if you have

access to the web, a few excellent sites with volunteer opportunities

are listed below:

www.volunteermatch.org

www.idealist.org

www.volunteer.gov

Occasionally individuals will go on disability for a short time and

then return to the workforce at a later date. However, once a person

makes the financial transition to a less prosperous lifestyle it can be

difficult to re-motivate and return. Although not technically on dis-

ability at the time, Maria was an example of someone who returned

to the workforce after living as if she were on disability for a year.

However, it took a significant amount of discontent to motivate her.

In addition, she was a twenty-year-old with potentially more energy

than a forty-year-old or sixty-year-old. If you go on disability and

later decide to rejoin the workforce, you will need to justify the gap in

your work history, which can be tricky and may make finding work a

challenge. In some cases a decision to go on disability is clear. But in

the event your case is not so clear-cut—for all these reasons—think

very carefully before selecting to go on disability. You can of course

return to work later, but keep in mind that you will likely have a

steeper hill to climb to get there.

Or perhaps instead of disability you are on the cusp of retirement

or have already passed sixty-five and can retire immediately and re-

ceive a pension. Depending on your age, retirement may be an alter-

native to disability, although, you may also want to consider still

working in some capacity such as volunteering just to keep busy and

active. Do you have to retire at sixty-five? No, not necessarily. These

days many individuals continue to work beyond sixty-five. Daniel is

one such individual who chose to continue working well past that

age. In fact, when he was diagnosed with kidney failure at sixty-nine

he continued to work full-time for many years and still continues to

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http://www.volunteermatch.org/

http://www.idealist.org/

http://www.volunteer.gov/

Work and Financial Implications of Dialysis 177

work part time. Now that you are on dialysis, you are not required to

retire, although you may decide that you want to.

Practicalities of Finances and Insurance Plans while on Dialysis

Obviously decisions around disability and retirement are not only

based on your physical and mental health but also on how these

changes will impact you financially. And by financially we are not

only referring to the paycheck that you draw but also to the health

insurance benefits that you receive depending on your income and

whether or not you are employed. Understanding the different types

of health insurance coverage for dialysis patients and how that may

affect you is a fairly complex topic, but we’ll do our best to cover the

basics. Then we’d recommend you follow up with your social worker

to determine which health insurance options are available to you and

which will serve you best.

Understanding Medicaid and Medicare

Let’s start with a basic description of Medicaid, what it is, and who is

eligible to receive it. Medicaid is a state-run program that receives

federal funding. It is a form of insurance with extremely low co-pays

associated with dialysis, doctor visits, hospital visits, prescriptions,

and so on. There are two groups of people that qualify to receive

Medicaid. One group is families with young children at home that

meet low income guidelines. The other group is individuals who are

over sixty-five or are blind or otherwise disabled and who meet low-

income guidelines. Under the criteria set forth by the Aid to the

Aged, Blind, and Disabled (AABD) program, individuals with renal

failure are considered disabled. The low-income guidelines will vary

from state to state but in general they are fairly rigorous and are de-

signed to grant Medicaid to those individuals who truly must survive

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178 D i a l y s i s w i t h o u t F e a r

on small incomes. Many of the people who fall within this category

may have previously been working for minimum wages, for sporadic

periods of time, or for cash. Oftentimes they have been uninsured for

much of their past working lives. Ironically, now that they have renal

failure and can qualify for both disability and Medicaid, they may

suddenly find themselves in much better financial situation than they

had been in previously.

Although this is good news for these individuals, it can also be an

eventual catch-22 should they want to seek gainful employment and

get off disability. If, for example, they return to the workforce and be-

gin to earn enough money that they no longer fall within the low-

income guidelines, they will often no longer be eligible for Medicaid.

And even though they are earning more, their health care premiums

will rise and their out-of-pocket expenses will increase. Overall, going

back to work may not be cost effective for them, so in many cases,

staying unemployed is the better financial option. Some states, in an

effort to help individuals return to work without being penalized fi-

nancially, will offer Medicaid buy-in programs. This means that for a

nominal fee these individuals can still receive Medicaid and the low

costs associated with it.

Medicare, on the other hand, is a health insurance program that is

paid out of a federal reserve of social security funds. Throughout our

lives as we work, we pay social security taxes and if we work a mini-

mum number of years, we become eligible to qualify for Medicare. In

some cases an individual may also be eligible to qualify for Medicare

through a spouse’s work history. Provided you or your spouse has put

in the necessary amount of time to be eligible, for you to then qualify

to receive Medicare you must either be over sixty-five or disabled at

any age. And similar to Medicaid, if you are on dialysis, you are con-

sidered by Medicare to be disabled. If you begin peritoneal or home

hemodialysis, Medicare can go into effect immediately. If, however,

you begin with in-center hemodialysis Medicare coverage does not go

into effect until ninety days after your first treatment.

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Work and Financial Implications of Dialysis 179

On a historical note, in 1972 Congress passed an amendment

mandating that Medicare cover the costs of dialysis and this coverage

went into effect July 1, 1973, thus ensuring that from then on in the

United States dialysis would be available for all who needed it. Before

then, because of the limited supply of dialysis machines, indi- viduals

were deemed either to receive or not receive dialysis by med- ical

panels. Thus this was earth-shattering legislation for Americans with

kidney failure.

As of 2005, Medicare now has a prescription drug program. For

the most part, this is good news for dialysis patients, as most of the

drugs that dialysis patients need are covered. There are some cases

when one brand of drug is covered while another is not, but this is

more disruptive to the medical staff than it is to the patient. Even

with this plan, the numbers of drugs an individual must take multi-

plied by the cost of co-pay per drug per month can be very expensive

and at times unaffordable for patients on fixed monthly incomes.

Dialysis patients are eligible for some medication financial assistance

programs, which we will talk about shortly.

Medicaid and Medicare both cover a percentage of fees associated

with mental health services as well as physical health services. This in-

cludes visits to psychiatrists, psychologists, and social workers. How-

ever, many mental health providers have small practices that are not

equipped to deal with the paperwork required by Medicaid and

Medicare and for this reason will often charge a comparable sliding-

scale fee that a patient then pays out-of-pocket. If you need to see a

good mental health professional, ask up-front what his or her insur-

ance and payment policies are. If the person’s services are not cov-

ered, often he or she will refer to professionals whose fees are funded.

Private, State, and Medigap Health Insurance Plans

Every private health insurance plan is different and individuals who

have a private health insurance plan through an employer may initially

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180 D i a l y s i s w i t h o u t F e a r

opt not to apply for Medicare depending on the specific costs, premi-

ums, co-pays, and flexibility of their plan. However, there is a federal

law that protects private insurance companies from having to cover

dialysis costs indefinitely. The law essentially caps the amount of time

(currently two and a half years) these private insurance companies must

pay for dialysis before Medicare must be employed to cover the costs.

When starting dialysis you should meet with your social worker to

understand if you might be best served to stick with your private in-

surance initially and move to Medicare later on, or if you would be

better served by moving to Medicare immediately. You will want to

look at which solution will save you the most money, as well as which

will enable you to be treated by the doctors or centers that you want.

In either case you may also choose to keep both insurance poli-

cies working for you, one as your primary insurance and the other as

your secondary insurance. Of course, after two and a half years,

Medicare must become your primary insurance. At that point you

can either keep your private insurance policy as a secondary insur-

ance plan or you can drop it entirely. As we said, every private in-

surance plan is different depending on your annual out-of-pocket

premiums and co-pays, so you’d be very wise to spend time with

your social worker to understand what will be the least expensive

option for you.

Many states have health laws that give individuals with chronic

illnesses better health insurance options than those available through

private insurance companies. If your state has such an option, you

may want to investigate the benefits of carrying this insurance.

Last, as we mentioned, in-center hemodialysis coverage under

Medicare goes into effect only ninety days after the first treatment.

And for all dialysis patients, Medicare covers only a percentage of the

total treatment costs. This is the primary benefit to having a second-

ary insurance policy—either private or state—to help cover some or

all of the costs that are not paid through Medicare. In addition, there

is a third alternative that can assist with these costs: Medigap. There

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Work and Financial Implications of Dialysis 181

are several different Medigap policies but they all serve the same

purpose: to help you with the monetary “gaps” that Medicare does

not cover. Like private and state health care plans, you will pay a pre-

mium for a Medigap policy.

Other Forms of Financial Assistance

Maria mentioned that there were educational grants available to her

because she was on dialysis. We discussed this with our expert social

worker and she told us that there are several foundations and non-

profits that can help dialysis patients pay for a whole host of ex-

penses associated with dialysis such as medications, the first ninety

days of in-center hemodialysis treatments that are not covered by

Medicare, and educational or vocational training, among others. And

she advised, “Don’t try to figure it out all by yourself. There are

questions you don’t even know to ask and there are resources that ex-

ist that would never occur to you. Speak with your social worker,

nurse, or dietician about your concerns. Many times there are solu-

tions or at least possibilities of solutions that you wouldn’t have the

slightest idea about. Using the professionals around you to find these

resources is very important.”

As an example you may not know that every state has an office of

rehabilitation services. These offices are designed to assist people

who have a variety of physical and mental disabilities to optimize

their work abilities and opportunities. They can provide training or

give you money toward technical courses, or a GED or bachelor’s de-

gree. If you are disabled these services are entirely free. Most of the

time they can be extremely helpful, but occasionally you may en-

counter a rehabilitation counselor who is misinformed and thinks

dialysis patients are unable to work. But you don’t have to accept no

for an answer. If you have an idea of what you want to do and you

just need somebody to help you get there, these offices have the re-

sources to help. And although there are many people on dialysis who

are able to continue working in highly physical vocations, there are

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182 D i a l y s i s w i t h o u t F e a r

some who find they no longer have the strength and endurance to

continue in their field. For these people, the rehabilitation services

offices can be particularly helpful. Rather than going on disability

indefinitely, such individuals, with the help of vocational rehabilita-

tion assistance, can many times re-train themselves to do alternative

types of work.

A Job Well Done

At the end of the day, most of us like to feel a sense of purpose and

meaning. We take joy in our accomplishments, which sometimes in-

clude performing a task or a job for pay, for intellectual stimulation,

for companionship, or for the pure joy of helping others. Now that

you find yourself on dialysis, your professional life will likely shift a

bit to accommodate dialysis. You may need to redefine exactly how,

when, and where you find your sense of purpose and meaning. But

rest assured, you need not plan on relinquishing every bit of your

time to dialysis. And if you are lucky, you may even be able to con-

tinue doing what you were doing before you started dialysis. Even if

your world tips upside down temporarily, it will likely right itself

eventually and it need not come to a complete and permanent halt.

Remember to allow yourself the time to be sick and to feel better.

Then once the worst has passed, try to go back to doing what you

normally did—or as close to it as you can get. That, unto itself, will

be a job well done.

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