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In her own words: living with kidney failure

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Michelle is a 29-year-old, part-time schoolteacher. She is engaged and lives with her fiance and seven-year-old daughter. Her fiance has two children, ages 4 and 6, who stay with them every other weekend.

What was your first sign that something was wrong? What symptoms did you experience?

I was 24 weeks pregnant when I first knew something was wrong. I had trouble breathing every time I lay down. At first, I thought I had something like bronchitis, because I had been experiencing sinus symptoms for a few days. It got much worse, and finally one night I could barely breathe when I lay down.

I went to the emergency room, and found out that my blood pressure was extremely high and I had pre-eclampsia. They immediately admitted me to the hospital and put me on bed rest. I was in the hospital one week when they decided they couldn't wait any longer, and I gave birth to my daughter via emergency caesarean section. She weighed one pound and seven ounces at birth. They fully expected that once they delivered her, I would be fine. But I wasn't. I got worse and went into renal (kidney) failure.

I started dialysis when my daughter was 5 days old. I also developed HUS (hemolytic uremic syndrome), or HELLP (hemolysis, elevated liver enzymes, and low platelets), as it's sometimes called. This is a rare blood disorder in which your body destroys platelets, which help your blood to clot. Since I had just had a caesarean section, this was a serious problem. In addition to dialysis, they gave me plasmapheresis, chemotherapy, and about 55 blood transfusions. I was very, very sick. I nearly died several times before they finally got me stabilized.

What was the diagnosis experience like?

My first dialysis treatment was performed in my hospital room on an emergency basis by my nephrologist. At first, they tried to get a femoral line (in my groin), but couldn't because my blood pressure was so high. So they put in an intra-jugular line in my neck. I was very scared. Because this was an emergency, no one really took the time to explain to me what was going on. They just started sticking needles everywhere. I had severe pulmonary edema (fluid in the lungs), so they had to put a CPAP mask on me to help me breathe. I couldn't even talk to ask questions about what was going on. I was terrified and I also felt so sick that I really thought I was going to die.

Finally, in addition to dealing with the failure of my kidneys, I was also dealing with postpartum feelings and not knowing if my tiny newborn baby was going to live or die.

What was your initial and then longer-term reaction to the diagnosis?

My initial reaction to my diagnosis was hopelessness. I couldn't imagine having dialysis three times a week for the rest of my life. I thought that my life as a normal human being was over, and I wanted to just give up at first. Had it not been for the fact that I had a newborn baby to take care of, I probably would have just given up. I was only 22 when this happened. I had never been married and I was sure that I would never find anyone who would love and accept me, especially with my illness.

Since then, my long-term reaction has changed drastically. I have discovered that I am a much stronger person than I ever dreamed. I have also discovered that your life doesn't have to stop just because your kidneys do. I know now that you can do anything that you put your mind to. It took several years of going through the steps of the grief process for me to get to this point. I was sad, then I was angry, I was in denial and now I have finally reached acceptance.

How do you manage kidney failure?

I have hemodialysis treatments three times a week, three and a half hours a treatment. I am on four different types of blood pressure medication three times a day to control my hypertension. I am also on Coumadin (a blood thinner) to keep my blood thin enough so that it doesn't clot.

Have you made any lifestyle or dietary changes in response to kidney failure?

I can no longer be spontaneous when it comes to traveling. All trips must be planned around my dialysis schedule. Otherwise, I have to make arrangements to dialyze wherever I am going. That has been the thing I hate the most.

I am on fluid restriction (32 oz per day), potassium and phosphorus restriction (which includes limiting my intake of dairy products, certain fruits and vegetables, chocolate, and nuts, among other things). The hardest for me is the fluid restriction because I am a very active person.

Did you seek any type of emotional support?

I have visited several online and real life support groups. Mostly, it helps me to educate others about kidney disease, dialysis, and transplantation. I like it when people ask me questions—I'd rather answer a question, than have them assume something incorrect.

Does kidney failure have any impact on your family?

My daughter, who is seven, doesn't understand that sometimes I am tired after dialysis. She thinks because I just "sit there" during my treatment I should feel rested. Because I look healthy, some people don't understand that dialysis drains me. I don't know how to explain to people how I feel after dialysis. I wish that my loved ones could walk just one day in my shoes to see what it's like.

What advice would you give to anyone living with kidney failure?

My best advice for someone living with kidney failure is to educate yourself about your disease as much as possible. Learning things that you can do to improve and lengthen your life is the key to success.

Living your life as normal as possible will help you. Go to school, work, do as much as you can do physically to keep your mind and body as fit as possible. Don't ever use dialysis as an excuse to get out of things that you can do.

But most of all, stay positive. You will be surprised what a positive outlook can accomplish.

Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.