Dialysis Doesn’t Discriminate: Hemodialysis Patient Shares Experiences (Part 2)

SURVIVAL TIP: You must determine whether dialysis will dictate your life or if you will live your life around dialysis. Many people consider dialysis their “part time job” because it takes 4-6 hours a day. But you decide how you live with dialysis.

After being at the dialysis unit for several weeks, I learned some things I considered unusual. The patients’ caretakers—their parents, spouses, children or church members— who brought them to dialysis for 6 a.m. or 11 a.m. treatment formed a social circle. They seemed to know each others’ families, church folks, and medical prognoses. They talked as if they were best friends. Statistically, black people are about 3.5 times more likely than whites to develop kidney disease. Diabetes is the leading cause of kidney failure at 38.4 percent and can lead to loss of toes, feet, fingers and limbs, and even blindness. I wasn’t a part of that dynamic. I was an otherwise healthy 36-year-old white woman with a business to manage. I did not want to be a part of this group who had accepted their curse. They would be bound to dialysis for three to four hours on Monday, Wednesday and Friday, or worse, Tuesday, Thursday and Saturday. Their lives were dictated by dialysis. These long-time patients knew people who had died while on dialysis and many patients knew their fate would be the same. I think I met one person who was on the transplant list. Some started dialysis when they were young. Others had family members who also were on dialysis. They seemed to find solace in the camaraderie. I thought of dialysis as doom. To associate with these sickly individuals was to accept a life-limiting diagnosis. I believed I was the exception. I had a kidney transplant in the works.

But I was simply one of 30 people sitting in a lobby waiting to be called to go back to the treatment area. Sometimes appointment times were on schedule, sometimes, not. If a patient had difficulty and stayed later, everyone with that tech started and ended later. Every day felt like a cattle call. We were all nameless numbers to be processed before the employees can go home. No matter how cheerfully the nurse greeted us, we all had the same diagnosis: renal failure. All of us must give up 15-20 hours a week to travel to and from dialysis and sit through treatment.

Many dialysis patients die from heart issues or pneumonia. Dialysis treatment stresses the heart, but most people don’t die from kidney disease if they are compliant with their dialysis “prescription”. The doctor “prescribes” how often and how long each dialysis treatment lasts and recommends appropriate diet, fluid gains, medicines and supplements. Although people seldom die FROM dialysis, they die while on dialysis. Abruptly ending dialysis generally results in a person swelling from fluid retention and suffocating in their own fluids. It is a horrible, painful way to die.

Other things amazed me. People were not compliant. I didn’t understand why because my parents valued discipline and respect. We honored our elders and visited the doctor regularly. Had it not been for a virus, my quickly advancing kidney disease would probably have advanced to full renal failure by the time I had an annual visit. (Give thanks in all things.) Most people in ESRD  are aged 45 – 64, so statistically1, I was not a candidate for kidney failure. I followed the orders and recommendations of my nephrologists. Some patients didn’t limit food and drink intake as they were supposed to. One man came in after a weekend of drinking and was considerably over his dry weight. (Dry weight is the weight of someone not carrying excess fluid. A healthy person urinates to eliminate excess fluid. When the kidneys fail, the body does not eliminate fluid waste and retains the fluid in the bloodstream and tissues until it is removed with dialysis.) He gained about 10 kg over the weekend. That’s about 22 pounds. The high end of the goal is 3.6 kg or 8 pounds. That’s 32 – 40 oz. per day in drinks, ice cream, soup or any other liquid. The heart is not able to maintain the stress of pulling off 20 pounds of fluid in six hours. But this was apparently his routine.

Normal blood sugar levels before meals hover between 70 to 80 mg/dL. For some people, 60 is normal; for others, 90, according to WebMD. A woman with blood sugar levels in the 300s had phantom leg pains in her stump and requested Codene and Tylenol to relieve pain and allow sleep. She cried and screamed in pain until she got pain medicine. That did not make for a calm, palliative environment! Still others skip treatments and cut their dialysis short, which can cause illnesses and difficulty breathing.

Many older people filled the chairs beside me, and it seemed I never sat by the same person twice. I never felt comfortable there. I just wanted out. I really enjoyed the occasion when they had too many patients on a shift and I had to go in the (nice, quiet) isolation room. I was alone with my thoughts and a TV. The staff wasn’t fond of having to use the isolation room because it is restricted to infectious patients who must be kept away from the general population, so it had to be cleaned and sterilized beyond normal practice.

Some people arrived with drivers who stayed, some who left. Many came on public vans or in ambulances while bed-ridden. Whether we walked in or rolled in in wheel-chairs or gurneys, we weighed and had our temperatures taken when we were called back to the treatment room and before leaving. Weighing shows how much fluid was “pulled off”, and a higher temperature can indicate infection.

After all these years, I don’t understand why I had to go through this. I didn’t know in March 2007 how long I would be on dialysis. But I knew it was a means to an end. And I hoped my miracle was coming soon. With my prayers, and because of the prayers of those who loved me, I made it through, one day at a time. And my journey in dialysis continued.

If you or someone you care about is facing dialysis, please share your experiences and concerns. Thank you to Britt and Eli who have reached out. The comments section has some discussion, and I will discuss topics of concerns int he posts, too. This is a forum for learning and inspiration. Please share your stories and questions. What were your experiences and challenges with dialysis?

 1 http://www.usrds.org/2010/view/v2_02.asp

2 http://www.kidneyfund.org/about-us/assets/pdfs/akf-kidneydiseasestatistics-2012.pdf This link has a helpful information sheet.

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About dialysisgal

When I joined the 450,000 Americans on dialysis, I wondered what "normal" would be. Would people stare at my access and ask what was wrong? In this blog, I hope to save other patients and their families from the difficulties I have faced. I want to share my experiences, what I learned, had to ask and was shocked to find. I am not a medical professional, but I hope we can have a conversation to help you better understand what you or someone you love with chronic kidney disease (CKD) might expect while living with dialysis.
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4 Responses to Dialysis Doesn’t Discriminate: Hemodialysis Patient Shares Experiences (Part 2)

  1. kimberly says:

    Hello. I just found your site. Thank you for writing this blog. It is a god send. You sound so brave and honest. Everything happened so fast for you. I don’t see how you coped so well.
    I FSGS and I’ve been in remission for 22 months and I’m now relapsing. Before remission I was a year way from dialysis. I’ve run out of drug options, so dialysis is in my future.

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    • dialysisgal says:

      Dear Kimberly,
      Thank you for your kind remarks.
      This blog is written eight years after my first dialysis treatment. I had the respite brought about by my aunt’s unselfish kidney donation. But I could not have written this even a year ago. I am not familiar with FSGS, but I will look into it. Perhaps transplant is an option for you. Ask to be considered as soon as you can, usually at 15-20% of kidney function. Consider any transplant unit within driving distance because each unit has different regulations. Some are more lenient than others. The first time, I had my aunt, so I went to the hospital 30 minutes from my house. But after 2 1/2 years on dialysis, I am widening my search. Grants will help with the expenses incurred by a donor, hotel stays and care immediately after the transplant when the patient has to remain near the transplant unit. My insurance covered all of my aunt’s medical expenses. And Medicare covers more than I would have imagined. When you are End-Stage Renal disease (ESRD IV), medicare starts to come into play, and when you start dialysis, you can apply for disability. But it requires past pay stubs and tax filings, so be prepared. Then the first three months, you are not entitled to benefits, and it can take at least that long to get the paperwork processed and approved.
      The immediate blog posts don’t talk much about transplant options because I had the benefit of my aunt. This time around is a little different. We have a good community of support in the Carolinas if you know where to look and where to get information, but you have to look, and that’s unfortunate.
      This is probably far more than you wanted to talk about, but I hope it helps. Please participate in the conversation. this is truly a forum where i hope dialysis patients can share information and experience to improve all of our lives.

      Be well!
      Beth

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  2. Kimberly says:

    Thank you for all that information. It has helped me so much. I’ve been so fearful of dialysis, I haven’t even wanted to talk about it. But I do better when I know everything up front.
    FSGS recures in 75% to 85% of transplant patients, so one Dr said a transplant isn’t the best the option and another said maybe. I hope there will be a medical break through to lower the recurrence rate. I’ll cross my fingers & say a little pray.
    So if I understand correctly you need another kidney? I’ll say a prayer for you too. 🙂

    Liked by 1 person

    • dialysisgal says:

      Hi Kimberly, I had a recurrence of IgA nephritis, so I need a kidney, too. Don’t give up on hope of a transplant. Try other places. Grants can help you and a caregiver travel. Check rates of success and ask if they have dealt with FSGS and with what success. Different doctors use different pharmaceutical combinations.
      The first 6 months of dialysis was physically difficult because I was scared. I really believe my pain was psychosomatic. But it really gets better.If you can get your access placed and mature before starting dialysis, that will help. And be honest with the docs that you need to know things to deal with them. You might also visit some different clinics and talk with their medical directors or unit nurses.
      Prayers for you, and know many others have survived on this path. You will, too. Without the grace and comfort of God, I would not be writing this.
      All the best,
      Beth

      Like

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