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.

Tall Tale

It may sound like a tall tale, but as revealed in the front page of my local newspaper today it’s all true.

As I sat at my kitchen counter drafting a letter to my benefactor, I decided to make one more call.  I decided to leave one more message.  What would be the harm?  I thought about what to say, and rehearsed it a few times.  Rehearsing for a phone message isn’t normal for me, but I wanted to convey my words in the right way.  Time was slipping by, and I reached out to hold the door open.  The door leading to my dreams blurring and merging into reality.

An eternal optimist.  A believer.  A dreamer of possible realities.  This is how I’d describe myself.  When things change in my life, even in the most awful ways, I prefer to believe that it is because there is something better around the corner on the cusp of entering my life.  I didn’t always see things this way, but I have for many years now.  It doesn’t mean I enjoy the dreadful moments and events that occur.  But, I know to let go of them sooner, laugh loudly, and re-dream.

This is part of my way of being.  Many people have tried to convince me that this is not a way to be.  That this is not reality, but mere fantasy.  When you’re life is on the line, you make choices.  I chose to dig in deeper, and grow my roots firmly into this way of being.  What’s the point in sharing this with you, dear reader?  Because I wish for this story of mine to inspire you and give you hope.

I dream of fully recovering from kidney failure.  I dream beyond this.  Why does my recovery have to be enough?  Perhaps I should go bigger, aim higher.  So, I dream of helping others with what I’ve learned as a dialysis patient and about the potential of healing with stem cell medicine.  For fourteen months I have been dreaming this.

I left a message, and then as before I hoped for a response.  Within an hour my phone rang.  My messages had been received.  My voice had been heard.  I listened as the person on the line explained what had happened with the check.  There had been concern that the check had fallen into the wrong hands.  “We would like to reissue the check”, said the man’s voice.  “I am here in town, can you meet me for lunch?”  Of course I replied with a resounding, “yes”.

“Om Mani Padme Hum” I repeated into the void of my car, as I drove to meet the employee of Ty Warner Hotels & Resorts the next day.  Mantras come in handy, when you’re anxious or worried.  Essentially they are a prayer repeated over and over.  They connect you with the Divine.  Whether a Tibetan Buddhist prayer like this one, or one to the Virgin Mary, they all speak to something higher than the self.

As I passed by him, I knew he was the man I was meeting for lunch.  We sat down inside the Biltmore, and with a large smile he reassured me that Ty Warner wanted to reissue the donation check.  He was warm and patient, as he listened to me talk about my pending stem cell treatment.  This wasn’t all though.  Ty Warner also wanted to support my efforts to bring attention to how stem cell medicine can help with kidney failure.  “Astounding”, I thought.  My second wish is also coming true:  potentially helping thousands of people have more access to information, which might positively change their lives.

The faith I had in Ty Warner’s kindness, sincerity, and generosity is just.  He is the donor I met that fateful day.  He is the man, who extended his hand to hold mine through his car window.  He is the man, who is opening his heart widely to help push my dreams forward.  My deepest gratitude goes out to Ty Warner, and I don’t have enough words to express the “thank you” from my heart and Spirit.

Dreaming and believing open the doors to endless possibilities.  Effort, work, and resilience will most likely be required on top of the dreaming.  Yet, the doors will begin to open.  I tell everyone that I will accomplish my dreams, and I disregard whatever negative or doubtful opinions they might have about them.  After all, they’re my dreams, and I will continue to have them.

The best possible outcome in Joy & Health. This is my focus. This is what I see.