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!


13 Comments (+add yours?)

  1. K.D.Williams
    Oct 16, 2012 @ 08:19:15

    Excellent! Excellent! Excellent! Jenny, how do I get in touch with you? You and I are in the very similar status. I too received stem cell treatment two weeks before you at the same clinic and by Dr K.

    I hope you see this and will email me. Btw, I too am getting stronger since my treatment.


  2. Maria Castanon
    Oct 16, 2012 @ 09:46:47

    I’m very happy to know that you are getting better, Jeniffer. Many people are praying for you I’m sure of that. K.D. Williams I’m happy for you also God Bless you guys.


  3. Alison Strieker
    Oct 16, 2012 @ 10:23:51

    I know what dialysis center you are writing about EXACTLY!! It is hard to read about dialysis – like you, I am in awe of how awful an experience dialysis is. For me, it has left me with PTSD, seriously! I am also looking forward to your posts…checking my email everyday! I am SO excited for you and your new lease on life! Keep us posted as you are doing!


  4. Scott E Coleman
    Oct 16, 2012 @ 12:47:44

    I switched clinics until I got treated properly….Its well worth the extra drive!


    • jennysvie
      Oct 16, 2012 @ 23:36:21

      Switching clinics in my area is difficult. There is only one other tiny one, and it is not covered by my health insurance. The next closest is a forty-five minute drive in each direction. Thankfully my nephrologist is excellent, and not one of the owners of the dialysis center. Several of the staff do a wonderful job as well. My objective is to raise awareness about the shortcomings of medical care in general in America: remember when doctors took the time they needed to treat their patients? The problems with health insurance and rising costs have contributed to doctors not being able to do their jobs and provide better patient care.


  5. Alison Strieker
    Oct 16, 2012 @ 19:12:44

    Good for you! I should have done that – I went to the same center as Jen…the place was (and apparently is still) awful. If I have to do dialysis again, I know which center I WON’T be going to. It’s been seven years and I have not been able to even once go back there to say hello to my favorite nurse, Cesar (who is probably not there anymore). When I travelled to Colorado, I got my own TV and popcorn and there was even a drink machine. I hear in Australia, you get massages and pedicures!


  6. Brielle gazzara
    Oct 19, 2012 @ 07:58:25

    Hi Jennifer! Thinking of you always!!! So glad you are coming off of medications for your blood pressure!!! It’s a start in the right direction!!! Has your dialysis center ever given you info on home hemo dialysis? I have been doing home hemo now since May and absolutely love it! I would never go back to the dialysis centers! I have a graft so I must canulate myself every time. I asked my nurse when I went in for a monthly check-up and asked her if patients that have a permacath (chest catheter) can do it at home and she said of coarse!!! I have a soft comfy reclining chair, my computer to watch Netflix or t.v, good book or sometimes friends and family come over to visit and talk. Also, the best part…..NO SET TIME!!!! I can do it in the morning if I have the day off OR do dialysis at night around 8pm after work and dinner and go to sleep when I am done around 10:30pm. I usually do dialysis every other day for 2hrs and 30 mins. I can eat more fruits and vegetables so the diet is more healthier. I am on zero blood pressure meds and overall feel terrific! I went to see my brother in Orlando and decided not to bring my machine with me( you can travel with it too) and get dialysis in-center. When I got there, all of these memories came back. The patients just look so sick and depressed. They had personal Tv’s, the staff was very nice but it’s just depressing having to sit in a hard vinyal chair for 3 hours( some of those people 4 hrs) 3 times a week.
    I have been on dialysis now for 22 years and when I was in center hemo just made the best of it. It was like a part time job and payment was getting to live.
    I hope home dialysis could be an option for you but hopefully won’t have to be because your kidneys are going to wake up and start working!!!!!
    Keep On Keeping On!!!!
    xoxox, Brielle


    • Alison Strieker
      Oct 19, 2012 @ 09:00:07

      Hi Brielle,
      I am curious…WHY 22 years? I thought the maximum wait was 10 years. What a great attitude you have!


    • Alison Strieker
      Oct 19, 2012 @ 10:08:28

      I was wondering if I could ask you a few questions, as it looks like I am losing my kidney transplant and will have to be on dialysis again. I would love to connect with you briefly, as I am concerned about a few things. Is this possible?


      • Brielle
        Oct 22, 2012 @ 08:04:12

        Hi Alison:)
        Yes!!! You can ask me any questions you have! My email is
        I have had transplants too but the rejected right off the bat:( my immune system is very strong for not having any kidney function! So the immune supprents did not work with the first transplant. I had the transplant for about a week. The second one I got pancreatits from the surgery! Those were back in 91 and then 98. I am done with transplants. I would rather be on dialysis then go thru all that again! I love home hemo dialysis and would love to share my experiences with you! :))

  7. MoonShadow
    Dec 07, 2012 @ 10:31:56

    Can we get an update? Are you still alive? Are you still improving?


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