Milk or Sugar?

Every moment I spend in dialysis seems like a lost moment.  I watch my life pass me by, and think of the endless number of ways I could spend and enjoy my time instead.  When I get up to go to dialysis in the early morning, it’s still dark outside.  I look forward with anticipation to the days when I will get out of bed in the darkness to watch a sunrise, to meditate, to chant my Spirit and body into a state of bliss, to wrap myself around the one I love sleeping beside me, to pack suitcases into the car for an adventure, to relish the singing of birds announcing the dawn.

Saturdays are hardest.  Who wants to spend their Saturday morning stuck in a vinyl chair for three hours?  Other dialysis centers are more bearable.  They have televisions, an internet connection, and more privacy.  This is not the case at the dialysis center that I must go to.  There is only the room of patients reclined back, waiting for the day that their suffering ends.  It’s no wonder that ninety percent of the patients are severely depressed.  Where is the palliative care in America?  Where is the focus on the well-being and comfort of the patient?

The two times, when I’ve traveled to other dialysis centers, have given me a chance to see how there can be differences in healthcare for patients.  What I’ve learned is surprising and shocking.  It has further opened my eyes to the flaws of healthcare in America.  These may not be politically correct things to talk about, but I’d rather reveal the truth with the hope that it will motivate change.

Most recently, when I traveled to Trinidad, I had dialysis at a private hospital.  This was an absolute necessity for me.  We often hear as Americans, that the medical care in the United States is the best in the world.  While America does offer the standard of the lengthy testing standards of the FDA, such standards do not mean that the medical care is better.

Simple, superior, and reasonably priced.  That is how I found dialysis at the hospital in Trinidad.  The admitting staff was friendly, not grumpy or rude, and they were expecting me.  After completing a few basic forms, I went to a cashier’s window, and paid for my treatment with my debit card.  I had been told in advance what my out-of-pocket cost for dialysis would be, and it was what I ended up paying.  There were no hassles or lengthy wait times.  The hospital was clean and the staff was well organized.

The cost of dialysis in this foreign country was astonishing.  Based upon the paperwork I receive from my insurance company, the cost of it in my hometown in California is roughly eighteen thousand dollars per month.  This is how much my insurance company pays my local dialysis center.  One day, as I sat outside eating breakfast on the patio of the hotel, I calculated the cost of dialysis in Trinidad.  I recalculated it several times due to my disbelief in the difference.  Dialysis costs about fifteen thousand dollars more per month.  No, not in Trinidad.  In America.

You may think that this must be because the care and the facility were poorer in quality.  The hospital was efficient, professional and even had a large flat screen television in the waiting room.  Within the small dialysis room I found vinyl chairs identical to the ones at home, flat screen televisions, a separate and private room for patients with hepatitis, and the machines play chimes or music instead of incessant and obnoxious beeping and alarming.  The nurses were friendly, and well-trained.  They were even kind and thoughtful.  The second time I was there, I was surprised when a nurse offered to make me tea.  “Would you like milk or sugar in it?” she asked.  Hot tea was made for me and brought over by the nurse.  It was not special treatment because I was a foreigner; she did the same for the other patients.  The nurses took great care to make sure the patients were comfortable.  They went to great lengths to alleviate any cramping, and I never saw a single patient throwing up or being ignored.

Yes, the room is smaller.  The number of patients is less.  However, the ratio of staff to patient is also less.  Both days that I was there, the female nephrologist attended to the patients.  She addressed their concerns and questions expertly, and took the time to ask how I was doing even though she’s not one of my doctors.  About five years ago I was a volunteer for Visiting Nurses and Hospice Care, and I learned about palliative care.  I realized that I was witnessing palliative care for patients on dialysis outside of America.  It made me see how little of this exists at home.

Might it be the demographics?  The age of the patients in Trinidad that makes the difference?  The background of the patients?  My view is the same every time, and I’ve experienced more than one time slot, or shift, as a patient.  As I look around I see a room full of patients predominantly over the age of seventy.  I sit in a room, where the majority of the patients will never be able to receive a transplant, because they are not American citizens.  They will remain on dialysis perpetually until their bodies give way from some other factor beyond kidney failure.  I watch and listen as the nurses struggle to communicate to the majority of Spanish speaking patients in the room.  It must test the patience and hearts of the nurses.

Dialysis patients have it rough.  A dialysis center with no televisions, no internet connection for laptops, and no palliative care only makes it harder for the patients.  Easing the suffering of the patient should be the primary goal, regardless of age or country of citizenship.  Sure, the bottom line may be more in the black for the owners, but the expense upon the patients is certainly in the red.  Remember that movie, The Matrix, in which human beings serve as biological batteries for the machines?  Has modern medicine in America become similar in concept?  Medicine has become big business in the United Sates.  As long as dialysis patients don’t know about the possible options they have with stem cell medicine, they will continue to generate a never-ending stream of revenue for the private businesses and doctors that own the centers.   Every minute seems dark in such surroundings, where it’s obvious that much more could be done at little cost to provide for the one hundred and twenty patients wishing for anything to make their dialysis time easier.

The darkness of predawn mirrors where I am now.  At the place before the light arrives.  The dark hours are the toughest ones for anyone.  The hours of struggling, losing hope, doubting, and hurting.  Yet, it is the knowledge of light which keeps me going.  I know the dawn will come.  I know the light will arrive, and that the Light always envelopes me.  Even when I can’t see it.

I consider myself one of the lucky ones.  Every lost moment gets me closer to my recovery and freedom.  I’ve watched my blood pressure drop and begin to normalize on its own over the past three weeks.  It is staying within the normal systolic range of one-twenty to one-forty with the aid of only one blood pressure medication.  Next week will mark two months since my treatment, and I know it is still early, but I eagerly await the changes that will come in my blood tests.  The improvement in my blood pressure is the first sign of regaining more kidney function.  I welcome it and cheer on the stem cells now repairing my kidneys.

Always grateful.  I will remain always grateful for taking the risk and becoming a pioneer in the field of stem cell medicine.  Recently I learned that another patient has made a full recovery from kidney failure and dialysis, due to the same stem cell treatment at the same facility in Trinidad.  Two research scientists have won the Nobel Prize for their work in stem cell medicine, and UCI has received large grants for research.  I am grateful for how my story has impacted the lives of other kidney failure patients, and I am thrilled that several are going for treatment this month.  A smile stretches across my face, as I learn that some of them are doing so before they even need dialysis.  Knowing that this will allow them to avoid the surgeries, medical complications, and loss of hope that most dialysis patients experience, brings me a deep sense of joy.

I feel it now:  I can tell I’m getting stronger every day.  Last night for the first time in over a year, I easily had enough energy to cook a full dinner for guests at home.  I am finding it harder and harder to believe that I’m a kidney failure patient.  I can feel my body healing and reclaiming its rightful status as healthy and strong.  Looming around the corner, out of the darkness, is the day I will no longer need the catheter for hemodialysis.  That day has left the mere existence of my dreams and visions.  It is manifesting into reality.  Om Santih!  So Be It!

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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.