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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Liquid Gold

It was essentially the eleventh hour, and my nephrologist was leaving me messages on my cell phone.  The messages went something like this:  “I spoke to Dr. F, and he has told me that getting the stem cell treatment will be very risky and dangerous for you.  He said the other patient did not get well because of the stem cell treatment.  She got well because she stopped doing whatever was making her sick.”

After researching and preparing for months, it was now, the evening before I was supposed to leave for Trinidad, that my doctor was telling me this.  The interfering doctor, Dr. F, was not my doctor.  He was the doctor of the patient, who had gotten the same treatment at one of the same clinic two years ago, and had recovered enough to come off dialysis.  I’d spoken to this patient several times, and had no doubt that the stem cell treatment helped her regain kidney function.

Why would this doctor say such things?  Perhaps it was his financial interest in his business as a co-owner of a dialysis center, or that he wanted to cover himself legally.  Perhaps it was his lack of knowledge about stem cell medicine.  Maybe it was that he hadn’t ever gotten around to reading the documented evidence the patient had given him after treatment.  Or it could’ve been that he caught wind of and read the article about me in the newspaper a few days before my departure.

Whatever the reason, it didn’t matter.  What he was doing and saying was preposterous.  The history of the other patient was that she’d had an MRI with contrast dye to get a clearer image of her colon, and shortly thereafter her kidneys failed.  It is well known by doctors that contrast dye can cause permanent kidney damage, and this is stated on the form you have to sign before getting an MRI.  I’ve seen it myself.   I was almost accidentally given an MRI with contrast dye earlier this year, when my doctor wanted a better picture of my bladder and kidneys.  If I hadn’t pointed out to the staff at the radiology center, that my nephrologist would never want me to have contrast dye, then there would have been more damage caused to my kidneys.

I did not heed the warnings of Dr. F, and on Wednesday, August twenty-second I returned to the clinic for my adult stem cell treatment.  The actual machine is about the size of a large desktop printer.  I could fit it on my kitchen counter at home.  Seeing it now, and knowing that it will dramatically alter my life, generates feelings I can’t describe.  Feelings of excitement, anxiety, awe, and anticipation.  I am grateful that my boyfriend will be with me the entire duration of the treatment.

When I travel I commonly take my mala with me.  The string of one hundred and eight sandalwood beads, which I use for mantras and prayer, reminds me of my connection with the Divine.  The same nurse, that I met the first day, comes into the treatment room.  Because she sees my mala, we end up talking about mantras, and I learn that her life story must be incredible.  She is originally from Rwanda, and a survivor of genocide.  It is remarkable, that even after what she’s been through, she believes that everything is connected.  It is also what I believe:  all life is connected and comes from the same source.

Making this type of connection reassures me.  Electrodes are stuck to my chest, and a blood pressure cuff is placed around my left arm.  The heart monitoring machine begins to take readings.  Dr. K enters the room, and supervises, as the nurse gives me a shot of local anesthetic before putting the needle for the intravenous line into my right arm.  I’d been told that the needle would be very large, and I look away before they begin.  I feel the brief pain of the anesthetic , and then nothing.  There is absolutely no pain as the needle goes in.  I only wish I’d had this experience with all the other i.v. needles, that had been used on me in the hospitals.  Sometimes the medical care you receive outside the United States is superior and more palliative.

Grasping a squeezable orange ball in my right hand, I laid in the medical bed watching as another nurse began to set up the machine.  The top of it opened up, and inside the lid was a digital screen.  My total blood volume had been calculated based on my weight and height.  I was asked to gently squeeze the ball for the first extraction.  I watched as my blood left through the i.v. line’s plastic tube and went into the machine, where it was separated by the centrifuge.  There were three empty i.v. bags attached to the machine, and I saw each one begin to fill with different components of my blood:  plasma, stem cells, and other cells.  After the first extraction, my plasma and other cells (such as white blood cells) were returned to me through the same line.  It could take up to four hours to complete the process of cycles of extractions and returns.

The nurses and doctor monitored me closely during the procedure.  Only the tingling in odd places, like my face, hands and feet, bothered me while I patiently kept my arm still.  I didn’t want to displace or upset the effectiveness of the i.v. needle.  I could feel it pressing against me inside, but there was zero pain.  Chewing on a few tums helped alleviate the tingling caused by the blood thinner.  The air conditioner hummed, keeping the room cool in the tropical heat of the island.  I refrained from drinking or eating anything, since I knew I couldn’t get out of bed until it was over.  More of my stem cells continued to collect in the bag on the side of the machine next to me.

Two and a half hours later I was done.  They had completed thirteen cycles, one more than the twelve it took to process all of my blood.  No problems.  No pain.  The effects of the blood thinner quickly wore off.  Roughly one hundred and ten milliliters of stem cells are collected during this type of treatment.  I’ve been an overachiever most of my life, and today was no exception.  Over two hundred stem cells had been harvested from my blood.  Millions and millions of stem cells now sat in the bag, activated and ready to go to work.

Liquid gold.  This is how I defined the bag of my stem cells.  All my cells had stayed in the safety of the sterile bags, and nothing ever left the room.  There was no manipulation by a lab. The bag of tiny miracles was removed from the machine and suspended at the top of an i.v. pole.  It only took about twenty minutes for my stem cells to be returned to me.  I felt nothing remarkable, and sat up on the bed right after the needle was removed.  Wow!  It was all done, and it was much easier than I had expected or anticipated.

Dr. K reminded me that I might feel tired for a couple of days, and to get enough rest.  When I went back home, I would have to be closely monitored by my doctors.  Regular testing would indicate when I could reduce my dialysis time, and then come off of dialysis completely.

Getting a stem cell treatment isn’t like taking an antibiotic, from which you get better after seven to ten days.  Not enough data has been collected yet to tell you how soon I will notice a difference.  I am one of a handful of people, who decided to leap into her future by having an adult stem cell treatment.  Pioneer is now another word I will use to describe myself.  May my foray into the relatively unknown inspire thousands of others to raise the dialogue about stem cell medicine, and investigate it for themselves.

Creation doesn’t happen overnight.  I wait patiently for my stem cells to repair the damaged tissue in my kidneys.  In the meantime, my prayers will go on, and I will begin to plan for the day the catheter is removed from my chest.

Dr. K

Through the door I went.  A nurse promptly greeted me, and led me into a room with comfortable chairs and a flat screen television with the Today show playing on it.  The wood floor and simplicity of the building surprised me.  Last year I’d met with a plastic surgeon in Los Angeles to consider a stem cell treatment using my own adipose (fat) tissue, and I felt uncomfortable with the flashy lobby furniture, rude staff, and pretentious patients assessing my worth, as they surveyed me from head to foot.  In contrast this basic clinic in Trinidad was quiet, clean, and the friendly nurses immediately made me feel at ease.

“We need to get a blood sample,” said the kind nurse.  I’ve had roughly sixty blood tests, since I became a person with kidney failure in June of two thousand eleven.  But for a moment I had to look away, and take a few deep breaths as the nurse held the large needled syringe used to get the pre-treatment sample.  The smaller butterfly needles weren’t available.  It’s not the prick of the needle that bothered me; it was seeing the size of the needle.  She did an excellent job of collecting the sample, and then placing some of my blood into each testing tube for the ISO certified laboratory.  My blood pressure was taken, and I sipped on my iced green tea, as I looked around at the basic surroundings.

Dr. K, as I’ll call her to respect her privacy, came out to lead me back to the consultation room.  She willingly explained her medical background as a doctor.  She had completed a rotation in oncology in London, followed by working in hospitals in intensive care and anesthesiology.  When the clinic opened earlier this year, she was approached as a thriving doctor at a family practice.  Traditionally trained, Dr. K was skeptical about the clinic and the stem cell treatment being offered, when she was contacted by one of the co-owners.  After observing for six months, reviewing details with the staff geneticist, and seeing the amazing results, she decided to leave her practice to join the clinic and shift her career path.

The procedure was explained to me in detail:  an intravenous line would be placed in a peripheral blood vein in my arm.  I would be given some blood thinning medication (dextrose-based) to prevent clotting, and my blood pressure would be monitored closely the entire time by Dr. K and the nurses.  It would all take up to four hours, and they would attempt to collect as many stem cells as possible.  A potential change in the treatment might happen, if the vein in my arm didn’t work well.  Then a line would be put into one of my legs.  While I was nervous about that being a possibility, it was too late to turn back now.

Dr. K took a detailed medical history, and had already reviewed all my lab reports and doctors’ summaries, which I had sent earlier from home.  An EKG was done to check the health of my heart, and Dr. K conducted my physical exam.  She remarked that I am the healthiest dialysis patient she’s ever seen, and that my heart is extremely healthy and strong as well.  I was not rushed through the comprehensive evaluation, and she answered all of my questions without hesitation.

Leaving the clinic, I discussed everything with my boyfriend, who insisted on joining me for my medical adventure, and had the funds and time to go.  The most wonderful patient case that Dr. K had mentioned (without personal information being revealed) was the one about a quadriplegic, who started walking after a stem cell treatment at the same clinic.  Imagine how many military veterans could be helped by stem cell medicine.  “May my results be as wonderful”, I thought as the taxi transported us back to the hotel.

It was Tuesday night, and I couldn’t believe I would receive my treatment the next morning.  I had a few brief moments and thoughts of worry and concern about any risk, which might be involved in this type of procedure.  But, then again, everything medical carries risk.  My strong intuition and how things had happened for me in the last year pointed towards this treatment, like lights guiding an airplane to its landing.  I knew it was the right choice for me.

Falling asleep at the hotel, I steered my thoughts to having an easy, painless and effective treatment.  I said a quiet prayer (one of many) asking for assistance so that my treatment would go well.  I prayed for recovery and successful results.  I visualized the treatment happening without pain, and with the doctor harvesting as many of my stem cells as possible.

Exhausted from very little sleep, the time change, and the newness of it all, I fell asleep.  Tomorrow, Wednesday, would be the BIG DAY.  May the angels watch over and safeguard me.