Memories in a box

“What do I have to say now?”

It’s what I think as I consider writing again.  July is an emotional month every year and the intensity and spectrum of emotion increases through to October.

It’s my current goal that led me to post in a round-about way.  I’m digitizing boxes of paper records and documents, getting rid of things I don’t need or want, and simplifying as I try to decide what I want to do next in my life.

Those records, well, they’re predominantly medical records from my time on dialysis and my efforts to get a kidney transplant.  The lab tests, medical exams, letters, and hospital records were necessary for so long.  I needed them at my fingertips.  They bring up the memories, the emotions, the gut-wrenching struggles as I go through them to decide what to keep and what to toss.  Processing takes time, externally and internally.

So Dear Reader, I’ll be going between the present, past, and future to get to where I am today with my kidney story.  I’ve thought a lot about if letting it fade into obscurity is the better choice.  Is there any benefit in the telling of a bit of my life now, so many years after my last post?

YES!  I am a recipient!

A kidney became available for me in October of 2016.  I’d been on dialysis almost five and a half years by then.

I boarded the plane in jeans, a white long-sleeved pullover, and a pink tutu at LAX for the early morning flight.  Wearing the plastic captain’s wings as I passed by others and hearing them tell me, “Good Luck!” made me smile more as I looked for my seat.  I’d spoken to the pilots, while waiting for the boarding announcement, to check if we’d be on time for our arrival in Phoenix.  It was crucial that we land on time.  The pilots gave me the wings to wear.  I still have those tucked away as one of many reminders of that day that started at 2:00 am.

How do I describe what it was like to be on my way to a better life?  Elation, amazement, disbelief, awe.  I felt all of that and more as I flew by myself to go get the kidney that would let me live a more joy- full life.  I only felt excitement and no fear.  I’d accepted that there were two outcomes possible: I’d live or I’d die.  If I’d gone all the way for a stem cell treatment in Trinidad, then I could certainly get on a plane after two hours of sleep and go get a transplant.

Everyday for a few months I visualized my body accepting a new kidney and integrating it into my body and spirit.  I imagined it becoming a part of me easily.  I told myself that I could do it and that it would be the best kidney I could hope to be given.

When I got off the plane, my phone rang.  A transplant nurse had been keeping track of my flight.  She asked me how I planned to get to the airport.  I certainly was not going to stand around for an Uber.  I took a taxi and was there by 8:30 am.  No one was there with me.  No one met me there.  Comforting reassurance was absent and I relied upon my courage.  I knew the facts about my donor and knew with every fiber of my being that it was the kidney for me.  Waiting in the admitting area of the hospital, brimming with anticipation, I wanted to scream out, “I’m here!  I’m ready!”.  Courage and a knowing that it was my kidney had filled me, leaving little room for anything else.  There was no turning back.

Even as I think of it now, the tears well up and my lips form a smile.  That day was absolutely the best day of my life!

My transplant team doesn’t know that I had two stem cell treatments and neither do any of my current doctors.  I initially kept it to myself so that I wouldn’t be rejected as a possible kidney recipient when I went through transplant evaluations.  That’s right; I went through more than one of those and traveled to multiple transplant hospitals in America.

I’ve proven that the stem cell treatments caused me no harm, and haven’t affected my transplanted kidney or body in any negative way.  My kidney is a super star and my creatinine ranges between 0.65 – 0.78.  I remain a huge proponent of stem cell medicine and marvel at what can be done with it now.  There are several transplant hospitals that combine a stem cell infusion with a transplanted kidney from the same living donor.  Those recipients have a chance at taking little to no anti-rejection medications.

I have no regrets as a kidney recipient.  As I sit here resting my left knee which became inflamed over the weekend from a stuck kneecap (ouch!), I’ve decided to revisit the keyboard.  Life is never the perfect ideal we imagine.  I embrace that I am free from the dialysis machines every day.  There have been great, good, sad, infuriating, wonderful, peaceful, painful, and mind-blowing moments: there will certainly be more of them.  I remain a realist envisioning the next steps of my journey, choosing to embrace my life through it all.

Celebrating Blue-Green Day in April, 2017

Today, five years ago I found out that I was active on the list of that transplant hospital.  Memories can be so sweet.

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.

Clowning around and making light of a serious situation.

Clowning around and making light of a serious situation.

Knock, Knock.

Yosemite 2013

The most awful feeling settled into the deepest recesses of my bones the moment it happened. The dialysis nurse held open his hand to show me the broken pieces. The connecting end of the catheter was broken. It was a Friday in December, a few weeks after the stem cell treatment in Florida.

I had finally fully recovered. My little wounds had healed. Light pink scars remained. I was looking forward to the unfolding results over the next few months.

Now I found myself freaking out inside. I had a bad intuitive feeling. A very bad feeling. I called the radiology center to schedule to have the catheter replaced immediately. The soonest I could get in was Monday.

As if declaring a prediction, the doctor said to me as I lie on the operating table, “everyone gets an infection when these are replaced”. More dread crept into my mind.

A few days later, and I wasn’t feeling well. I wasn’t feeling well at all. I knew I was going to end up in the hospital. I knew I would be in for a while. It wasn’t going to be a quick trip, or a pleasant one.

My mother was on her way. On Sunday morning I couldn’t stand because the pain in my feet was beyond excruciating. My neck was swollen on one side. The pain in my upper back was unbearable. Almost a 104 degree temperature made me delirious. My mother gathered some of my things, as I dialed 9-1-1. I needed help getting down the stairs and to the hospital.

Knock, knock. Death was at my door again. This time it was serious. This time I saw grave concern (yes, pun intended) on the faces of those around me. This time my family was worried. I had septicemia, and blood clots had closed off my jugular vein. SERIOUS!!

That broken catheter connector normally served as a barrier to bacteria. They’d gotten in. Exchanging the catheter pulled them further into my body, and straight into my heart. Straight into my bloodstream. Cultures were brewing at the hospital lab. Fingers were crossed that it wasn’t MRSA. Antibiotics coursed through my body non-stop through an I.V. line. It would take days to determine the exact bacterial strain.

Heparin pumped constantly through another I.V. line to dissolve the clots. While in the ICU, I watched my right arm swell to three times normal size. The clots were in that arm as well. Any one of them could travel to my lungs or brain, and my life would be over in an instant.

“Are you in pain? Would you like any pain medicine? You can have whatever you like for pain.” Nurses repeated these phrases and questions often. I thought to myself, “WOW, they’re being so nice to me.” I learned much later that no one thought I would make it. They were making me as comfortable as possible for my final days.

I knew it wasn’t my time to go. I knew I would survive. Not for one moment did I feel or think otherwise. I knew it would be hard, and take time. Even as day three passed, and the cultures indicated that the antibiotics weren’t working. The bacteria were multiplying even faster.

My mom’s eyes were always red-rimmed, as she faced the alarming possibility of losing her first-born and only daughter. My brother’s techie tendencies distracted me, while he donned a blue sterile suit and examined the backside of the digital screen hanging in the ICU. We waited, and I continued to breathe. My heart continued to beat. My body battled.

Part I: Harvesting

Almost a month has passed, and I still think it’s the craziest thing I’ve ever done. I have no regrets, but it definitely is not for the faint of heart. Although I’d asked all the right questions, the experience of having my adipose stem cells harvested from my abdomen was not quite what I expected. The doctor was excellent, but it was still overwhelming and incredibly intense. As I watched him lower the scalpel, I thought “What am I doing? This is insane”.

Yes, you have it right. I was awake during the procedure. I could see the surgeon and the nurse the whole time. I could see the different equipment and instruments being used. While on the surgical table, I felt the prick of the needle on each side of my abdomen. The initial incisions were made, and more local anesthetic was pumped in. After waiting for the anesthetic to take effect special instruments were used to collect the stem cells.

It sounds simple enough, but what does this really mean? Exactly what happens?

I will tell you. Surgical instruments are inserted between the skin and muscle along the width of the abdomen via the small incision sites. Anesthetic fluid is pumped in slowly to help numb the area inside and separate the skin from the muscle and fat. More instruments are used to suck out the tissue, which contains the valuable stem cells. Occasionally there was a little bit of pain, as the cannulas hit a sensitive area. Imagine poking a small hole in a cantaloupe, and then scraping out some of the fruit without disrupting the seeds, over and over. Adipose stem cell harvesting is like that. It feels like that.

I have been a thin person almost all of my life. It felt unpleasant, this scraping. It was a sensation unlike anything else. On a person with more body fat the sensation might be different or less pronounced. After an hour it was finally over. I was relieved to be done, since I’d reached my limit mentally and emotionally. The surgeon had done his best to collect as much as possible, considering I didn’t have a lot to work with. My life-saving stem cells were whisked off to the lab.

A few stitches on each side, gauze, bandages, and a compression bandage around my abdomen. The hard part was done. I got up after a few minutes, and joined my mother in the waiting room, while my stem cells were being prepared for re-entry. I was exhausted and mentally wiped out. I wasn’t in any pain, and it would take many hours for the numbness to dissipate.

"All done."

“All done.”

Now what? I’d made other requests before deciding to fly to Florida for this vital stem cell treatment. Would they be fulfilled?

On The Cutting Edge

The ending of a relationship, moving, financial struggles, and the death of a loved one.  All of these are known as some of the most difficult and stressful events that a person can go through.  Over the last five months I’ve had all of them happen to me.  Needless to say, blogging wasn’t at the top of my priority list. 

Stress takes a more pronounced toll on my body, because of the ongoing challenges of being a dialysis patient.  Sleep eluded me for months.  Torturous stabbing stomach pains woke me nightly.  My broken heart ached and wept.  I lost my appetite, and with it weight that I shouldn’t .  A strained knee, and sore muscles from moving furniture and locations twice in less than thirty days, had me limping.

It’s taken me some time to recover, and stabilize.

There were some rays of light and hope as well.  In early June I was invited to meet with the CEO of a stem cell research company in California.  I also was privileged to tour the company’s research lab, meet their very nice staff, and get a look at some amazing equipment.  I was deeply moved to learn that I am influencing stem cell research by being so open about the details of my experience with kidney failure, receiving an adult peripheral blood stem cell treatment, and my subsequent improvements.  The CEO’s expertise in stem cell research motivated me to pursue another treatment, and his kind donation added to the funds I’ve been setting aside for it.

The highlight of my summer was being able to reduce my dialysis to two and a half hours twice per week.  My doctors and the dialysis staff were anticipating that the reduction would be short-lived.  They were wrong.  The stem cell treatment has certainly delivered the results it had promised:  Less dialysis time and improved kidney function.  This is a BIG DEAL! I’ve eliminated a day, and reclaimed my weekends!  I now am down to half the amount of dialysis time compared with before my stem cell treatment.

Regularly I get asked for numbers and facts, so here are a few.  Prior to the stem cell treatment I had dialysis three hours, three times per week.  My BUN was usually in the 80’s; I was on three medications to control my blood pressure; my PTH was 600 or higher; and my Vitamin D level was low.  Now my BUN is in the 50’s to 60’s; I am on only one blood pressure medication; my PTH is around 300; and my Vitamin D level is normal.  Other improvements include great immunity, normal iron levels, and zero hospitals visits or stays.  These are enough reasons for others to consider stem cell treatments for their kidney problems.

Stem cell medicine is advancing at lightning speed.  Earlier this year the book, The Healing Cell, was published.  It contains impressive and incredible information about stem cell medicine for a range of medical dilemmas, including MS, lupus, arthritis, and severe burns.  New results and discoveries occur on a weekly basis, and over 2,500 clinical studies are happening in the area of adult stem cell treatments.  Stem cell medicine is a bit like a sleeper film.  Most people aren’t expecting it to become much of anything.  It will shift medical paradigms.  It is a game changer.

In less than a year’s time, the same business partner involved with the Trinidad clinic (and other Caribbean locations) has partnered with BioHeart Inc. in the United States.  The combined knowledge of the two entities is making adipose adult stem cell treaments more available in America.  Patients now also have the option of having extra stem cells harvested, cloned (expanded) in the lab, and frozen for future use.  This is remarkable!  These new USA locations have vastly more experience than an isolated plastic surgeon guessing at the right approach.  The data collected from them will impact your future, and the future of your children.

Phase Two begins for me a week from today.  I will be heading out for a second adult stem cell treatment.  Again I will board a plane.  Only this time I’ll be going to Florida.  I’ll be able to receive the treatment here at home in the United States.  The stem cells will be collected from my adipose (fat) tissue.  I hope to tour the lab while I’m out there to learn more about this growing field of medicine and possibilities.

Once again I find myself on the cutting edge of medicine.  I find myself venturing into areas that sound like a science fiction story.  My intuition tells me this is the right choice and the right time.  My grandmother, who passed away recently, will be watching over me and helping me from the Other Side.  If I am half as resilient as she was in her life, then it will all turn out extremely well.  I don’t have it in me to expect anything else.

Time To Go

OLYMPUS DIGITAL CAMERAEighteen hundred years old, and towering above me, the Grizzly Giant was a living reminder of resilience, strength, and vitality. Walking among the amazing sequoias, and seeing their ability to survive and regenerate after the damage of ravaging fires, inspired me. I savored the aromas of the forest, the fading chill of Winter, and the calls of the winged creatures flying above.

We arrived in the dark the night before. And it was freezing outside the comforts of my heated car. Thirty-one degrees to be exact. Someone had left a window open in the room, significantly diminishing the effectiveness of the old-fashioned radiator. Clothed in multiple layers, we huddled together for warmth in the small double bed. I didn’t sleep well that first night, but I was still excited to start the day’s adventures.

Last year I couldn’t have gone. I was still battling ongoing episodes of inflammation of my kidneys, which would land me in the hospital every few months. But this year, this year is different. All the infectious bacteria that caused my kidney failure have been found and eliminated. Throughout the winter I saw gradual changes in my lab tests, celebrated another birthday with friends, and began to return to my work helping others. I am healing. I am so much stronger and healthier. My blood pressure has been normalizing, along with more test results, and the stem cells are continuing to do their work.

It was time to go. Time to be near the giant trees, the melting snow, the massive walls of granite. For more than a decade I had wanted to see it, and now I would not be delayed. It meant missing a dialysis treatment, but I wasn’t worried. All life involves risk, and I knew my body could do it. I only wished that I was already in better hiking shape, and that I could stay longer to explore more.

As a chunk of ice floated down the river, I watched Spring unfolding. The deafening cascade of Yosemite Falls, the highest waterfall in North America, thrilled me as I drew closer. Looking up from its base, I yearned to hike to the upper section. But my body wasn’t quite ready yet to make the long trek. Mirror Lake, the meadows of the Valley, and the views of El Capitan and Half Dome all held endless wonders. It’s no surprise that John Muir and Ansel Adams were captivated. I’ve come a long way since being in the Intensive Care Unit a year and a half ago, and I’ll be hiking again in the Sierras in the near future.

The pictures don’t do it justice. They don’t convey the beauty and vastness of Yosemite National Park. Some people might believe that you can experience something or someplace by watching it on television, in the movies, or on the internet. You can’t. How will you know what it feels like to have the mist of Bridalveil Falls dampening your hair and skin? How will you feel the roaring thunder of the water in the depth of your Being as you draw closer, or smell the richness of the forest as you wander past mule deer?

Sometimes places call to me. Beckon me. And, often, daily demands have led me to ignore the callings of my Spirit. Work, family, relationships, bills, and responsibilities. Seeing death approach so closely has changed me forever. Now I listen to my Inner Voice. Now I heed the places that call to me. Now I embrace my independence, my fierceness, my uniqueness. Every day my kidneys heal more. Every day I get closer to coming off dialysis. Every day is one more step forward.

With the onset of Spring, I feel a restlessness in my bones. Spring is a time of life, renewal and rebirth. I can sense it within myself as well. This year, this Spring, I can go to the places that are calling to me. The places within and beyond. And, I am deeply grateful.


As I drive to dialysis, I greet the dawn of the New Year. It’s been a year and a half since my kidneys stopped working, and my journey to kidney recovery began. Stronger, healthier, and happier, I’ve grown in my depths and abilities as a human being beyond what I thought possible. As a perpetual giver, I’ve had to learn to receive. I’ve learned to stop sacrificing myself and my health. If I’m not healthy, then I can’t possibly offer help to others. Raised to be fiercely independent, and taught to rely only on myself (and the Divine) by an endless stream of takers, I didn’t know how to open up to the people offering hands and hearts of support. Now I am willing to ask for help, a hug, or a place at someone’s holiday table.

The holidays were a mix of emotion, as I continued to face the difficulties of my family and various past friends refusing to take my situation seriously. Perceptions are unique, and everyone has struggles in life. Just as I recognize that the nurse in Trinidad, who immigrated there after surviving horrific atrocities in Rwanda, has been through tragedies that make my kidney failure look like a walk in the park; so should people see that a minor cold, sinus infection, or battling a few pounds doesn’t compare with the immediate and ongoing life-threatening reality of losing an essential organ’s function. The tragedy of kidney failure has certainly clarified the relationships in my life.

I’ve been reluctant to confess my disappointment in my family’s support, and how the lack of compassion from previously close friends has hurt me. I’m not generally one to complain in life, but any major health crisis often means a loss of more than just one’s bodily well-being. The impacts are also felt emotionally, and psychologically. In mentioning this, perhaps more people will reach out to others, as even the strong and capable need assistance when they are hit hard in life. Thank you to those, who have reached out to me, checked up on me, and made sure I could pay my bills.

The prospect of sitting home, alone, on Thanksgiving drove me to post on my private Facebook page: I offered homemade pie in exchange for a seat at a table. Old friends, and new ones, opened their homes and hearts to me over Thanksgiving and Christmas. Memories of easier holiday times surfaced, and I ached for the days when I used to gather with my family. Now each of my family members is caught up in his or her own life, and spending time with their friends and in-laws, or playing video games is more important. I yearned for my grandmother, Patricia, the matriarch of the family, the glue that held the family together. She led by example and word. Her grace, hospitality, and generosity still shape me today. And her pie-making lessons allow me to make flaky piecrust.

At the same time I was grateful to be alive during another holiday season. I relished being able to travel north a few hours, and skip dialysis on Christmas Day. Riding in the car’s passenger seat, while watching the change in scenery, brought me happiness. Seeing my name on a stocking, and the lovely little gifts in it on Christmas morning went a long way in making me feel welcome. The previous year I spent Christmas alone.

Vinyasa yoga in a new place was as life affirming as always, and I marveled at the ability of my body to move into the asanas. Ice skating encouraged me to stretch my body in new ways, as I savored the cold and pushed myself around the rink. The blinking lights in the darkness of the laser tag room enticed me to let go and play. I’d found another thing to enjoy, and a way to release the energy and emotions within. Conversations, delicious cookies, bouncing black squirrels, and winter rainfall closed out two thousand and twelve.

Over the last few months, the stem cell treatment has been working its magic. The day the length of my dialysis treatment was reduced to two and half hours per treatment was an exciting day. I regained three hours of freedom per month! My blood pressure has dropped down to normal with lower and lower levels of medication. Many of my blood tests are now within normal range, and my weight has stabilized. There have been fluctuations in test results, ups and downs in my creatinine and BUN levels. The biggest change is how amazing I feel, and I am brimming with energy. My immune system has become resilient, and I can feel the difference in my body.

Now it is a waiting game. I believe that the worst of it is over. Undetected infections have been found and treated, so that I no longer have ongoing inflammation in my kidneys. I’ve gone nine months without any visits to the hospital. Each day I wonder how much longer I must tolerate the temporary residence of the catheter in my chest. I no longer feel sick. I no longer feel like a dialysis patient.

Time passes by, and each second draws me closer to the end of this particular part of my life’s journey. I’m excited to see what lies ahead, as I carry the Light along a path that reveals itself with each passing breath. It may be a path that only I see, and I hope sharing it with you brings some Light into your life.

A lifetime is an opportunity to experience God in a different way. Every moment propels you closer to recognizing this essence, your Spirit, within yourself and everything around you.

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!

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.

Previous Older Entries