To Be Or Not To Be

A month ago I came closer then ever to my life ending, due to fluid building up around my heart and lungs.  Frantically and emotionally I rushed to complete my instructions for how my family should make decisions for me if I became incapable or if I didn’t make it.   I was scheduled for the first of two surgical procedures to keep me alive, and I had ominous doubts about the outcome.  That night I insisted on leaving my hospital room at ten o’clock at night to go outside and have an hour to look at the stars, listen to the sounds of the night, and pray for the grace to surrender to the possibility that I might not survive.  I was alone, being supported only by the wings of the angels, arms of my ancestors, and hands of the Divine.

Now I am fighting to get back on track and move forward.  Addressing the constant stress of trying to stay afloat financially, bills piling up, and lowered immunity led to a painful case of shingles in the last week.  Survival.  Now it’s about basic survival.  Many brushes with losing my life this year have raised questions.  Questions I never thought I’d have to face, let alone answer.  What does it take to survive?  Is survival enough?  In the darkest, most miserable moments, how do you survive?

The septicemia in December certainly did its damage.  The adipose stem cell treatment from the month prior did help save my life by strengthening my immune system enough to beat the infection.  Yet, I wasn’t the same.  My body was left weaker, off-balance, depleted.  I realize that many people don’t survive such a serious infection, and I’d had blood clots blocking my jugular vein at the same time.  A double-whammy.  Additional damage to my kidneys had been done, and all the ground I’d gained from the stem cell treatments was lost.

Another infection of that magnitude would certainly mean the end of the road.  I needed to make big decisions and changes.  Future stem cell treatments had to go on the back burner; staying alive became the priority.  In May, with prayers in my head and heart, I had surgery for the implantation of a peritoneal (abdominal) catheter.  Although I made the transition to peritoneal dialysis for the right reasons, continual complications and multiple hospital stays have been the result.

More changes are in the works, as I take the first steps towards my other option:  a kidney transplant to save my life.  Why haven’t I pursued getting a transplant sooner?  A mandatory waiting period of at least two and a half years prevented me from doing so, because of treatment of skin cancer on my back (melanoma).  I’m making the best of each day, and in the dark moments of anguish, despair, pain, and fear, all I can do is dig deeper, lean on my faith and the reliable support and love of my friends and community (local, global, & online) as I decide how to be or not to be.  One moment, one breath at a time.

More changes are in the works, as I take the first steps towards my other option:  a kidney transplant to save my life.  I’m making the best of each day, and in the dark moments of anguish, despair, pain, and fear, all I can do is dig deeper, lean on my faith and the reliable support and love of my friends and community (local, global, & online) as I decide how to be or not to be.  One moment, one breath at a time.

Clowning around and making light of a serious situation.

Clowning around and making light of a serious situation.

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!

Leap of Faith

Before I knew about the check fiasco, when I thought everything was done and ready, I tried to book my travel to get the stem cell treatment.  I had been researching previously, and learned that August is the least expensive time to travel there, to the clinic I’d selected.  An hour quickly went by as I reviewed airlines, travel routes, and hotels.  Of course, I selected the travel insurance option.  A woman can’t be too careful, when on dialysis and cruising out in the vast world with a chest catheter ever present.  I was ready to push the button and pay with my new debit card.  The one directly linked to my medical benefit fund at the bank.  Only it wouldn’t go through.  It was the weekend.  My bank was closed.  There was nothing I could do at that moment.

Due to the growing stack of medical bills, almost all of my money is consumed by doctors, hospitals, labs, and dialysis.  I’ve barely managed to handle these bills alone, thankful to those allowing me to set up payment plans of meager amounts:  ten dollars a month, maybe twenty-five at the most.  I do what I can to sort through it, match bills with EOBs, and catch the errors of my insurance company and the group that bills for emergency services at my local hospital.  It is a part-time job.

This is why I don’t have another way to pay for the travel other than this one debit card.  In case you’re wondering.

Periodically I would visit my friend downtown to tell her the latest news.  Walking through the door, I found her hard at work like usual even after business hours were over.  The decision was firm in my mind, and I’d finally chosen the clinic I believed would give me the best stem cell treatment for a fighting chance at kidney recovery.  It was June, and my friend listened patiently and attentively to my remarks about the clinic and the field of stem cell medicine.  Excitement lifted my voice, as I divulged trivia about the patient, who had successfully recovered following the same treatment.  I had spoken to this patient, and almost fell out my chair as I learned that this happened two years ago.  There had been no complications.  Only functioning kidneys as a result, and an end to dialysis.

This particular friend has always been a generous soul.  I go to her to get her opinion, and I highly value it.  Her comments were what I sought that day.  Nothing more.  As I rose to leave, she asked me what I thought it would cost to travel to the clinic.  Following my reply, she immediately grabbed her checkbook, and without hesitation wrote me a check for the exact amount.  Looking at me, she said now I could go whenever I was ready, and that I could use the funds however I wanted.  Once in the solitude of my car, salty wet drops smeared my makeup and rolled across my neck.  There have been so many reasons for tears throughout this health crisis, although the ones cried for joy are much sweeter.

Quietly resting in my bank account, these funds waited.  I waited for Monday.  The earliest day I could go to my bank and fix the problem with my debit card.  The problem was partially mine, since I’d forgotten to lift the transaction limit on the card.  I thought it would be simple.  It wasn’t.  Plans were crumbling, and monies were unraveling.

Days passed, and my iron-strong intuition kept pestering me that I needed to book the trip.  I needed to go no matter what.  I prayed for guidance and clarity, as I do more often than people realize, and remained open to seeing and hearing whatever messages might come through.  I had enough to pay for the travel, but not enough for the treatment.  Not even enough for the deposit with the clinic, for which I had negotiated.  I knew I had to go sooner than later, and at the time I was still attempting to figure out what had happened to the pivotal donation check.

Everyone has moments when they have to decide to leap or not to leap.  I was facing mine.  Friends kept telling me to “GO”.  One of my doctors randomly called me and said, “you just need to go, get the treatment, get well, and get that catheter out of your chest.”  I listened.  I heard the message over and over.  It was time to leap.  To have faith that my friends, family, community, strangers, and the Divine would hold out their hands to support me and get me there.

“Dearest Archangel Gabriel, give me the strength to get through this”, I asked every day and night.  With lightly sweaty hands and fingers, I pulled up the travel itinerary on my computer.  Rechecking the details, I confirmed.  My debit card worked this time.  It was done.  Like falling off a cliff into the darkness unable to see the bottom, I lept into my future.

A handful of people knew about this before today.  People, who I could count on to be positive, and who wouldn’t think I was too crazy.  Truthfully, I must be a little crazy to take this leap.  Faith and believing in the Light, the Divine, the Goodness in others requires craziness.  Some have been callous.  Some have been all talk.  Some haven’t viewed organ failure as a serious malady, warranting immediate action.  Never mind them.  I relish having the experience of seeing the best of humanity, or as penned by the devout Tukaram, “how then can a heart feel it is broken and in need if we are held in the arms of infinite compassion and strength?”

I AM going.  Today, in this moment, I am savoring the secrets I have yet to tell.  Shortly, they will have their moment as well.  Confusion and misunderstandings are fading fast.  Time will fly by, and then I’ll be boarding the plane, racing to a renewed lease on life.  I may only be leasing my body for a lifetime, but I can’t wait to extend the lease.

To you, who have listened, given, prayed, reached out, reconsidered, cheered me on, and embraced me with love:  my eternal thanks.  Without you, I couldn’t have made it even this far.  Blessings, blessings, blessings.