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?

Fluctuations

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.

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.