Do you dare?

Beep beep beep.  I’ll never forget the sound.  Imagine you’re in a large room, about the size of a small bank lobby.  There are sixteen large vinyl-covered reclining chairs arranged in a circle around the perimeter of the room, facing inwards so that you can see everyone and everything.  Remember when you were a kid and you had to line up in the order of boy, girl, boy, girl?  Well in this case, it goes chair, machine, chair, machine.  All of the machines are whirring, and always making noises.   Beeping.  Alarming for various reasons.

Do you dare ask a person “what is it like being on dialysis”?

Five hundred and sixty.  That’s how many hours I’ve spent in dialysis so far over the last thirteen months.  I have a fixed time for dialysis, recently changed to 6:30 in the morning.  That’s right, 6:30 am.   It’s not like other appointments, which you can reschedule or choose.  Three days a week.  Every week.  I don’t really have a choice.  It’s dialysis and I have to do it.

In the beginning, when I was really sick, I used to count the wooden ceiling tiles and the lights on the gothic black metal chandeliers.  There are no amenities in dialysis.  No television.  No pretty views out the sparse windows.  No internet access, unless you bring in your own hotspot device.  If you have a fistula in your arm for dialysis (most patients do), then you have to be poked with a large gauge needle each time, and you can’t move your arm for the three hours or more.  If you do, then the beeping will begin.  It’s a rough, grim and depressing scene.

When I arrive I pass through the lobby and walk to an empty chair, which I’ll be in for the next three hours.  There are little side tables attached to the chairs, and on one are the gauze, betadine swabs, mask, and syringes of saline and heparin with my name labeled on them.  I lift and lock the other side table into place for my bag of stuff.  It’s roughly the same stuff I bring in every time:  iphone for internet access, a magazine or book, my favorite iced tea, small snacks, headphones, a small notebook and pen, and a blanket.  Sometimes I bring in my laptop, so that I can watch a DVD.  Thank goodness I have a laptop and a smartphone.  I’d go crazy in the place without them.

After plopping my stuff down, I walk over to the large digital scale embedded in the floor.  If I weigh more that when I left the previous time, then it means that I’m retaining fluid and that fluid will have to be removed by the dialysis machine.  Luckily I have already recovered some kidney function, and for the last 7 months I rarely gain any fluid weight.  Convincing some medical personnel, that I can and should be gaining regular weight as a dialysis patient, has been an uphill battle.  Fortunately, my nephrologist has been very tolerant of many of my points of view and requests.

The arm cuff used to monitor my blood pressure doesn’t usually hurt.  It’s terribly annoying though.  First, a reading of my standing blood pressure.  Then again as soon as I sit down.  Again after the long plastic tubes are connected to the ports of my chest catheter, which rest outside of my body over one of my breasts.  My arm will be squeezed for a reading every half hour.   I have to remove the catheter from the inside of my clothing, so that a nurse can remove the bandages and open the valves.  The lines are flushed with saline, and filled with the heparin before my blood passes through the tubes for cleaning by the cylindrical artificial kidney.  It doesn’t hurt, and after a few moments my blood is returned to my heart seventy-five percent cleaner.  This is less than the one hundred percent that normal kidneys accomplish, but it’s enough.

If I move around too much, sneeze, laugh or cough then the beeping begins in earnest.  I’ve interrupted the flow of the machine.  A nurse will come over and push a few buttons to let the machine continue.  The more I cause interruptions, the longer it extends my dialysis time.  I try to keep still.  I try to block out the sights and sounds of the other patients groaning, snoring, pleading, and sometimes throwing up.  It’s the only way I can get through it.  Nothing is private in the room with the others and the staff of ten people or more.

Finally I reach the countdown of ten minutes, and my machine begins to beep again, signaling everyone that I’m done.  The entry point for the catheter into my body has been cleaned, and the bandage replaced.  Another squeeze of my arm for a blood pressure reading, and then I’m returned to myself.  Literally.  The plastic tubes empty, and a nurse repeats the saline flush and heparin into the catheter.  I feel the temperature difference as it enters me.  I don’t mind it, as it means I’ll soon be free.  I’ll be able to stand for a final blood pressure reading, a nurse will listen to my lungs, and I’ll be weighed again.  The numbness in my backside will start to fade, as I walk out the entrance door and relish the fresh air.

Patients don’t usually get visitors while in dialysis, because it’s not a happy place.  What’s it like being a dialysis patient?  I wouldn’t wish it for anybody.  Some days are worse than others.  I mostly try to keep myself occupied while I’m there, and I dream of the day when I’ll choose if I want to weigh myself or submit to any tests.  I dream of the day, that I’ll be free of the machinesFree of the beeping.

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6 Comments (+add yours?)

  1. Beverly Herbert
    Jul 13, 2012 @ 12:44:08

    I hope many people read this, Jennifer. It is so informative for most of us who only have a vague understanding of the process of dialysis. I am hopeful that this is the time when kidney failure will be cured. You deserve to be free of the machine.

    Reply

    • jennysvie
      Jul 14, 2012 @ 16:55:33

      I hope they read it too Beverly. Many people don’t talk about dialysis, and the way it’s portrayed as being simple and easy is false. Kidney failure is a brutal and terrible disease. So far transplant has been the only option, and it carries many complications and risks. My wish is not only for a full recovery with stem cell medicine, but also that I will help further develop this field for other patients. I believe that one day organs will be completely grown from stem cells (already happening at the Manchester Research Institute), and that this will replace all transplants.

      Reply

  2. Jason Werle
    Aug 24, 2012 @ 17:46:22

    I know the BEEP BEEP BEEP very well. I am an alumni from the other side. I was a Hemodialysis Tech for 88 days, once. You are totally correct in that it is not a happy place. The Machines Scream, the patients Scream & the staff Screams. I still work in healthcare and I still interact with various dialysis facilities, but I share your opinion. I truly hope the Stem Cell Treatment fully cures your kidney woes.

    Reply

  3. Chris Holt
    Aug 24, 2012 @ 19:09:14

    being a former dialysis patient myself, you described the treament area as i would have described.am glad that you will be able to have the stem cell procedure.Keep posting here to keep “us” all informed how your progress improves.No more going through life strapped to a chair……..Chris

    Reply

  4. D.b. Smith
    Aug 25, 2012 @ 07:43:03

    I am finding it hard to read your story but i will come back every day if I have to just to finish it. I am overwhelmed with tears.. mainly because of so much/many flash backs and relating. Jenny.. I am sorry you have to go through this. Please .. don’t stop writing. I want and need to know. It’s strange.. or maybe irony how I have to find people through a blogging system to understand the solitude of this silence disease. I was just telling my husband about you. Jenny.. I am not sure I am understanding or if I haven’t just got to read that far yet.. but if you have a chance at a transplant and are able to get one .. PLEASE take it. Stem cell research is going to take years/decades and I have been praying for advancement since the birth of my child. I agree.. if we can use our own body parts/chemistry to heal ourselves why don’t we fund this research vs. making people suffer through dialysis. There is so much I want to say but I can’t find the words. I am just overwhelmed with emotion.

    Reply

  5. http://tinyurl.com/midwpiers33687
    Feb 05, 2013 @ 22:52:31

    “Do you dare? kidneyrecoverywithstemcells” was indeed a superb post.
    If merely there was significantly more weblogs just like this specific one in the actual web.

    Anyhow, many thanks for your precious time, Susannah

    Reply

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