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.

On My Way

It must sound like something out of science fiction book or movie:  an autologous stem cell treatment to heal my kidneys enough to enjoy life without being attached to a dialysis machine.  I imagine that people also thought that Galileo’s ideas about our solar system seemed hard to fathom at one time.

Finally today is here, and I’m on the first plane.  Or, maybe I should say we are on the plane.  Staying last night in Los Angeles was a good idea.  Even with two alarms set, I woke up every hour because I was afraid I’d miss my plane.  As if to make sure I would not, about 15 minutes after I got up at five o’clock a.m. the smoke detector started beeping every few minutes.  What are the odds that in such a huge hotel, I’d end up in the room where the battery on the smoke detector runs out?  There was no way I could’ve slept through it.  A smile crept across my face, as I thought of the serendipity of it.

When I originally brought up the idea of traveling out of the country for a stem cell treatment, he was utterly opposed.  As I continued my research and verification of the legitimacy of the clinic, I tried to ease his mind about my choice.  Statistics, studies, research papers, and even the personal contact I established with a recovered patient (who’d had the same treatment) did nothing to sway him.  We disagreed about it every time I mentioned it.  He wasn’t the only one expressing doubts and concerns a few months ago.  Some family and friends were finding it hard to believe that stem cells exist within a person’s own body, and that they can miraculously heal damaged tissue.

Chronic illness exacts a heavy toll on relationships, especially on the close relationships.  There were many reasons, but they all added up to taking a break.  We went our separate ways, and I planned to travel internationally alone.  None of my friends or family could go with me.  I understood.  It would be expensive, and take about a week or more.  Going on a medical trip with a person suffering from kidney failure could turn out to be a complete nightmare.  I told everyone that I was willing to travel by myself, because it’s my life and my choice to do what I must to keep it.  My intuition continued to tell me that everything would work out.

A month had passed and he’d reconsidered.  Worry had taken over, and he didn’t want me going alone.  He knew it wouldn’t be a relaxing vacation-type of trip.  Anything could happen, and he agreed to be there to support me.  He’d been to the ER with me a couple of times in the last five months, and had met several of my doctors at appointments.  I wouldn’t have to use any of the money from fundraising for his travel expenses, and he could take the time to go.  My family and friends exhaled with relief.

My initial evaluation was on Monday, the morning after my plane landed, and the warmth and humidity of being in a tropical place thrilled me as I left the coolness of the airport.  While there are other stem cell medicine clinics throughout the world, most offer different and more invasive or less successful types of treatments (bone marrow and adipose tissue) for my difficult problem of kidney failure.  The clinic I selected is one, which has been doing these specific treatments for a few years now.  They have experience:  quiet a valuable asset, and one that’s lacking in the United States.  One of the co-owners, and the doctor who set up my appointments and treatment, partners with local business people to establish the clinics and carefully select the medical staff for each one.

The taxi drove us toward the clinic, through the capitol, roundabouts, and past the large park.  It was simple, nothing fancy, and set back from the road on a small street.  Passing through the white iron gate, we walked to the entrance and were buzzed in by a staff member.   I’d made it.  I was now at the clinic for my evaluation appointment.  I couldn’t wait to see the machine, and the scientist in me was jumping up and down in anticipation.  I thought, “WOW!  I’ve come such a long way to be strong and healthy enough to travel.  It’s really going to happen!  I’m really going to get a stem cell treatment and help move the research forward.”

Thank you God, thank you Angels, thank you guides for getting me this far.

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.

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.

The Type of Letter You Keep Forever

“Oh my GOD”, I thought as I drove in my car to my office last Tuesday night.  “This could be it.  I could actually be going.”  I didn’t expect anyone to still be at the office, and no one had called to tell me that a package had arrived.  A package that could potentially change the course of events in my life.  Entering through the waiting room, I found that someone was still there working.  Passing by with a “hi”, I quickly walked to my office in the back with trembling anticipation.

I had received an email the day before.  In rereading it with my mouth hanging open, I realized that the package was waiting for me.  And, now, I saw it in the shadowy light of my office.  Flicking the switch, light revealed that it was an overnight FedEx envelope resting on my desk’s glass surface.  It was from his business in the Chicago area, as promised verbally only a few days before.

In seconds I had it open, and I was reaching inside and pulling out the cream envelope inscribed with one word:  “Jennifer”.  The handwritten letter by the donor was genuine and heartfelt.  It was the type of letter you keep forever, and accompanying it was the check.  A check that could change my life in an instant.  Streaming tears of relief and amazement fell uncontrollably from my eyes, as I walked out of the room back towards the exit.  I was flooded with indescribable emotion.

The cost of roundtrip travel.  The cost of the dialysis treatments while there.  The cost of the stem cell treatment itself.  Food.  Lodging.  Calculating numbers in my head, I concluded that I might have enough now to go without worrying about anything.  I might have all that I need to claim my life back and continue my journey here on Earth.  All the tension in my body released and an unbelievable feeling of euphoria began to fill me.  Beaming a smile from ear to ear, I floated to my car to start sharing the news.

“Mom, are you sitting down?”, I asked over my cell phone.  She already knew the back story.  She, along with a few friends, already knew the name of the donor and how I met him.  He’d rolled up in his nondescript car, while I was fundraising at the French Festival.  He was lost and needed directions.  I often get asked by random strangers for directions.  Not one to miss an opportunity, I handed him my flyer and he made a fifty dollar donation.  As he drove off, I thought that was the end of our encounter.  One of my girlfriends with me that Saturday morning noticed his return before I did.  Again he stopped at my table near the entry to the parking lot.  He’d returned after an hour or so.  Rolling down his window, he reached out his hand and introduced himself.  I immediately recognized his name.  He was kind and sincere as he looked directly into my eyes, and the woman with him smiled at me.  They’d read my flyer.  I listened as he repeated over and over that he was going to help me.  That my fundraising was done.  That I didn’t need to worry any longer.  He said he would send a check after he returned to his offices during the week.

For the next few days I began to make plans to get the much-needed stem cell treatment.  Excited doesn’t adequately explain how I felt about having a normal life within my reach.  I began to dream about swimming in the ocean again, showering like a normal person, and I relished the thought of having my chest catheter removed.  A life without dialysis.  A life with all my organs working.

Over the years people have commented on the intensity of my life.  What’s that saying?  “God never gives you more than you can handle.”  I’ve worked hard to get where I am, meaning to fully get to being my True Self.  To let my Divine Self shine out as much as possible.  I’ve tried to become more patient, more tolerant, more compassionate, and to laugh often at life’s quirks as well as my own.  I consider myself truly blessed to have studied numerous meditation techniques, and yoga with wonderful teachers and Tibetan monks since my late twenties.  They’ve armed me with the very tools I need to get through this, and to continue moving forward.

A couple of days ago I had to go into my bank, to fix a problem with the debit card I now have for my medical benefit fund.  That was how I found out that a stop payment had been placed on the check.  The very check, that was going to go a long way in saving my life.  Shock took over.  “What?  Why?  How was this possible?”, I wondered.  Tears once more overtook my cheeks.  Immense sadness washed through me, as I struggled to grasp this news.  When something phenomenal is given and then is abruptly taken away, it jolts you to the core.  Not having it at all is easier than this.

I don’t have any answers yet.  There’s been no response to my email and phone calls.  I still believe that the donor meant to give me his gift.   After all he took time to write that touching letter.  I can’t fathom that a person would intentionally crush another’s hopes and renewed chance at life.  I can’t understand why any person would behave this way.  Perhaps it was an error.  Perhaps he’s not available to remedy the problem right now.  Perhaps he doesn’t know.  Perhaps I’ll never know.

I can only pick up where I left off:  striving to raise enough for the stem cell treatment.  In the book, Siddartha, there is a technique of visualizing the word “Om” riding on the breath and aiming towards a target as you exhale.  The seeker only focuses on this without distraction.  This is how I feel now, and how I have since the day I originally learned of my kidney failure.  Unwavering focus on recovering.  Unwavering attention to the Light streaming into my kidney cells, healing me.   I pray to the angels, my guides, my Guardian Angel, my teachers and ancestors, and those of the Light that it may be so.  Mere Gurudev.  Om Santih.

Do you dare?

Beep beep beep.  I’ll never forget the sound.  Imagine you’re in a large room, about the size of a small bank lobby.  There are sixteen large vinyl-covered reclining chairs arranged in a circle around the perimeter of the room, facing inwards so that you can see everyone and everything.  Remember when you were a kid and you had to line up in the order of boy, girl, boy, girl?  Well in this case, it goes chair, machine, chair, machine.  All of the machines are whirring, and always making noises.   Beeping.  Alarming for various reasons.

Do you dare ask a person “what is it like being on dialysis”?

Five hundred and sixty.  That’s how many hours I’ve spent in dialysis so far over the last thirteen months.  I have a fixed time for dialysis, recently changed to 6:30 in the morning.  That’s right, 6:30 am.   It’s not like other appointments, which you can reschedule or choose.  Three days a week.  Every week.  I don’t really have a choice.  It’s dialysis and I have to do it.

In the beginning, when I was really sick, I used to count the wooden ceiling tiles and the lights on the gothic black metal chandeliers.  There are no amenities in dialysis.  No television.  No pretty views out the sparse windows.  No internet access, unless you bring in your own hotspot device.  If you have a fistula in your arm for dialysis (most patients do), then you have to be poked with a large gauge needle each time, and you can’t move your arm for the three hours or more.  If you do, then the beeping will begin.  It’s a rough, grim and depressing scene.

When I arrive I pass through the lobby and walk to an empty chair, which I’ll be in for the next three hours.  There are little side tables attached to the chairs, and on one are the gauze, betadine swabs, mask, and syringes of saline and heparin with my name labeled on them.  I lift and lock the other side table into place for my bag of stuff.  It’s roughly the same stuff I bring in every time:  iphone for internet access, a magazine or book, my favorite iced tea, small snacks, headphones, a small notebook and pen, and a blanket.  Sometimes I bring in my laptop, so that I can watch a DVD.  Thank goodness I have a laptop and a smartphone.  I’d go crazy in the place without them.

After plopping my stuff down, I walk over to the large digital scale embedded in the floor.  If I weigh more that when I left the previous time, then it means that I’m retaining fluid and that fluid will have to be removed by the dialysis machine.  Luckily I have already recovered some kidney function, and for the last 7 months I rarely gain any fluid weight.  Convincing some medical personnel, that I can and should be gaining regular weight as a dialysis patient, has been an uphill battle.  Fortunately, my nephrologist has been very tolerant of many of my points of view and requests.

The arm cuff used to monitor my blood pressure doesn’t usually hurt.  It’s terribly annoying though.  First, a reading of my standing blood pressure.  Then again as soon as I sit down.  Again after the long plastic tubes are connected to the ports of my chest catheter, which rest outside of my body over one of my breasts.  My arm will be squeezed for a reading every half hour.   I have to remove the catheter from the inside of my clothing, so that a nurse can remove the bandages and open the valves.  The lines are flushed with saline, and filled with the heparin before my blood passes through the tubes for cleaning by the cylindrical artificial kidney.  It doesn’t hurt, and after a few moments my blood is returned to my heart seventy-five percent cleaner.  This is less than the one hundred percent that normal kidneys accomplish, but it’s enough.

If I move around too much, sneeze, laugh or cough then the beeping begins in earnest.  I’ve interrupted the flow of the machine.  A nurse will come over and push a few buttons to let the machine continue.  The more I cause interruptions, the longer it extends my dialysis time.  I try to keep still.  I try to block out the sights and sounds of the other patients groaning, snoring, pleading, and sometimes throwing up.  It’s the only way I can get through it.  Nothing is private in the room with the others and the staff of ten people or more.

Finally I reach the countdown of ten minutes, and my machine begins to beep again, signaling everyone that I’m done.  The entry point for the catheter into my body has been cleaned, and the bandage replaced.  Another squeeze of my arm for a blood pressure reading, and then I’m returned to myself.  Literally.  The plastic tubes empty, and a nurse repeats the saline flush and heparin into the catheter.  I feel the temperature difference as it enters me.  I don’t mind it, as it means I’ll soon be free.  I’ll be able to stand for a final blood pressure reading, a nurse will listen to my lungs, and I’ll be weighed again.  The numbness in my backside will start to fade, as I walk out the entrance door and relish the fresh air.

Patients don’t usually get visitors while in dialysis, because it’s not a happy place.  What’s it like being a dialysis patient?  I wouldn’t wish it for anybody.  Some days are worse than others.  I mostly try to keep myself occupied while I’m there, and I dream of the day when I’ll choose if I want to weigh myself or submit to any tests.  I dream of the day, that I’ll be free of the machinesFree of the beeping.

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