My Disease

Discussions for Patients, Family, and Friends PD For Patients
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My Kidney Disease

In graduate school, I read upon “Death and Dying”, a renowned Swiss-American psychiatrist named Elisabeth Kubler Ross presented the five psychological stages that terminally ill people go through - denial, anger, bargaining, depression and acceptance.

Having Kidney Disease has been described as an invisible handicap, I keep asking myself why me?

I was diagnosed with End Stage Renal Failure in March of 2007, due to prolonged high blood pressure and diabetes. I was informed that my kidney function (both kidneys) were 2 out of 10 meaning that I could no longer lead a “normal life” without dialysis. So I was put on Hemodialysis- for 4 hours every other day for 4 weeks until I started Home Dialysis. I am hooked up to a Dialysis Cycler Machine every night for about ten hours. I was placed on (C.C.P.D) Continuous cycling peritoneal dialysis and I had a catheter inserted in my abdomen.

My "Denial” started about year ago as a buffer after unexpected shocking news. Denial was my partial defense. Recognizing that I have Kidney Disease was the hardest part for me, especially when I was only 40 years old and could be facing death. At first I refused to accept that I had Kidney Disease and prayed and hoping that I’ll wake up and I would be back to normal, but that day never comes. It is easier for me to believe that it will disappear than it is for me to believe that I have Kidney Disease.

I am no longer able to deny my Kidney Disease and the denial has been replaced with feelings of anger, rage, frustration, envy, and resentment. I’m especially angry with my old primary care physician, because I feel as though he should have seen the warning signs beforehand. I sometimes resent others who are normal and I always ask God, “Why me” what did I do to deserve this?

“Bargaining"…is really an attempt to postpone…" For a person with Kidney Disease, postponement may be applied to getting testing or seeking services but not following through. At the beginning this was a difficult time for my family and me because it seem that I started to accept my situation, but was unwilling to do anything about it. I bargained with God because I thought I was doing everything right in my life. So I masked and camouflaged my illness. I asked GOD, “Why have you given up on me? What did I do so wrong to deserve this? If I’m a child of God why am I in this situation? Sometime I feel as though God doesn’t love me or he just doesn’t hear my prayers.

“Depression” I can no longer deny my Kidney Disease. I struggled with keeping it under control and the fluid build up caused weight gain, although I workout. I hate telling others about my situation, because they give me a sad story or talk about someone who has complication or died from Kidney failure. I’ve realized that I cannot smile it off anymore. I feel numbness or stoicism, my anger and frustration keeps me depressed; however I hide my feeling and sometimes I feel like I’m grieving the Kidney Disease and I’ve lost hope. My Kidney Disease is more frustrating and annoying than most people can imagine. My anger is boiling under the surface and it comes out over what appears to be a minor annoyance. Some people say that I look good on the outside, but they don’t know that I’m all torn up in the inside.

Acceptance", I think this is the stage that I’m currently at. I’m able to accept my own mortality; for some Kidney Disease is a defeat; a battle fought and
lost. For others, Kidney Disease becomes an integral part of life; a natural end
to the life experience. In coming to terms with Kidney Disease as a part of life,
for me, I have reached a kind of acceptance of the life cycle.

As for me, I have come to terms with my life and my illness and acceptance breeds a peacefulness and composure. I require dialysis and medication to live. The nature of “hopes" changes throughout the course of my illness. Hope at first is for the prolongation of life and a transplant is the cure for my illness.

My doctors and treatment team communicates well with me and make feel like I’m the only patient they have. They are very involved with my care before and after being diagnosis with Kidney Disease. My doctors would call concerned about my strange labs and send me on for testing. They didn’t just want to hand me pills without explanation. It’s like they treated person with a medical condition not the symptom.

I found out that dialysis is not something to fear. It’s made me feel better and I have more energy, better color, and a better ability to do things than I did before starting dialysis. It took me several weeks to get adjusted to it, but now that I am, things are pretty good.

Lauriel Larkin

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Dear Lauriel ,

These stages you have outlined for us. I think we have all gone through then, if not - are going through it . I know for sure that I’ve been through most of them, even though I’m only 20. Having known about my condition since I was 17, I’ve had alot of times to think about the same questions you asked. Though I’ve never really gotten an answer.

Is it a boon? A Curse? I think it could be either way, and I depends on how the person takes it. I chose to take it as the earlier. So far so good. In CCPD (with one midday) and things seem to be turning better.

I’m glad to hear that your PD Team is so helpful, I know I’d have a tough time if mine weren’t helpful. Though about the medicine thing…hmm : haha

~Rail

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Hi Lauriel,

Thank you for sharing your experiences–painful as they’ve been. I think it might help you to go through the Coping module of Kidney School at http://www.kidneyschool.org, if you haven’t already done so. All of the feelings you’ve noted are normal (not that that makes them any easier to go through). The module has some exercises and some questions to ask yourself that may help you put things in perspective.

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Lauriel my husband started PD last January. We thought our world was coming to an end. The couple of years before this learning about his kidney failure were so bad for us. He is a diabetic and has high blood pressure. He also had congestive heart failure, heart attack and open heart surgery.

We have survived and our dialyis clinic has declared him their star patient. Life is good. Not a bed of roses but we had adapted to the situtation. We live close to our children and their families.

Last night we got everything ready for the PD and then stayed up with family and friends and enjoyed welcoming the new year.

Thank goodness there is PD. Nine hours at night and the rest of the day is ours.

5

I hope that you are aware that the social worker at your dialysis facility is available to you even though you do home dialysis. Dialysis social workers are supposed to have a masters degree in social work and to provide counseling to help patients cope with the changes the come with kidney disease and the fears that often accompany them. There have been studies with patients who have kidney disease that found that patients who did the best were those who maintained a positive attitude, persisted in seeking answers to their questions, and participated actively in their care. They also spoke of these 4 beliefs or affirmations:

  • I want to live
  • I am still me
  • I am still valuable
  • I am in control

There have been those who dispute Elisabeth Kubler-Ross’ stages of grief. I’ve observed them and lived through them. Some dispute may be because the feelings don’t always fit neatly into certain stages in a certain sequence. People may have to work through them again as life events occur that cause grief…and not just related to grief over a death or loss of a bodily function.

Most people want a transplant and it’s natural to think that your life will be like it was before kidney failure. However, understand that a kidney transplant is not a cure for kidney failure. Most people with kidney transplants will tell you it’s another treatment for kidney failure with its own set positives and negatives and sometimes expectations don’t live up to reality.

If you’re depressed–which is common especially when someone is new to kidney failure–ask for help. Some resources available to you include your dialysis social worker, family, friends, religious leader, and other patients. Asking for help isn’t always easy, but there are people with many people, including those of us here, who are anxious to help you. I’m glad that you posted your feelings. Welcome to our community.

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Thx for your comment, but my faith in God has keep me strong, because he did not give me the spirit of Fear.

Mr. Larkin