Tuesday, July 10, 2007

I’m peeing!  Yes, what a way to begin my communiqué, but this is a small miracle within itself.  After 15 years of zero bladder control I am beginning to restore function.  What most take for granted everyday (a simple tinkle into the loo) has been a silent dream of mine for years.  Since my spinal tap with a massive dose of stem cells injected last Friday, I am happy to report that I have tinkled on my own sixteen times.  I void approximately 50% on my own and then use my electronic stimulator to fully empty.  I am hoping that with time I will be able to empty completely on my own accord.  I attribute the stem cells to this small but significant accomplishment.  My toes on my left foot continue to wiggle ever so slightly – sometimes barely at all.  A Russian neurosurgeon visiting Dr. Shroff confirmed that this is also a small miracle.  After he viewed my digital MRIs and cat-scans he agreed that my new toe wiggle is something I should not be able to do at all given the massive extent of my injury.  He also confirmed that the toe wiggle is not due to a muscle spasm and that I am actually doing it on my own.  This was reassuring.

My personal theory:  In August 2000 I had a revolutionary procedure that virtually made me bionic.  I had a Vocare Bladder Implant installed into my abdomen with wires that wrap around connecting to electrodes on the S-3 nerve root off my spine.  Upon electrical stimulation with an external controller, the S-3 nerve root is triggered, and my bladder contracts and then empties.  With each electrical impulse, three middle toes on the left foot curl under as they are also connected to the S-3 nerve root.  The fact that my middle toes on the left foot and my bladder are now beginning to function with the embryonic stem cell treatment causes me to wonder if the electrical stimulation kept those nerve pathways and muscles strong these past seven years, hence the rapid return of function to the toes and bladder.  The neurosurgeon agreed with me on this postulation and along with Dr. Shroff, has encouraged me to begin electrical stimulation of my leg muscles upon returning home to the United States to keep my muscles alive and strong—massage isn’t enough on its own.

Friday’s twenty minute spinal tap procedure went very well.  The nurses were so gracious and Dr. Ashish Verma performed the procedure.  I was awake the entire time as he asked me questions.  I was laying face-down on my stomach with my body angled downhill.  I couldn’t feel the procedure as it was done at my coccyx area where my sensation to touch ends.  During the procedure I felt a “heaviness” in my abdominal area and thoracic/lumbar spine.  Power outages in Delhi are a common occurrence…and as if it was planned, the power blacked out on cue during my procedure.  The team kept calm a s if it was nothing out of the ordinary and kept working with a fluorescent emergency back-up.

I was required to lie prone without moving for six hours afterwards (which almost drove me nuts) on a bed raised on one end by four bricks wrapped in newspaper and masking tape (no electronic beds in Delhi J).  Again, I was downhill so the blood flow rushing towards my head.  After four hours I begged Mum to lift my knees for a few minutes without interrupting my back position to relieve my slight ache.  The second spinal tap will be a 24-h our overnight stay, and the third procedure will be done over the course of three days.  I do not have dates for these procedures yet.

The day following the spinal tap procedure I was absolutely exhausted with my energy completely depleted and I had no appetite.  Apparently feeling drained is to be expected—yes, it was as though I had been run over by a mucho grande truck.  For the first time today I have my energy restored, and per doctor’s orders I am drinking energy drinks and eating more substantially.  I regained my strength for physical therapy and I now have the stamina and focus to write and provide you with an update.

Each morning I do PT with Chavi and in the bed opposite me lies Mr. Singh.  His wife Geeta looks at him with total adoration and is always by his side.  I’ve determined that Mr. Singh must call his physical therapist, Dr. Deepti, before he leaves his house in the morning to color coordinate their clothing.  Today, quite coincidently they were all in orange and yellow.  Last Thursday, they were all in blue and white.  Even Mr. Singh’s striped shirts match his wife’s flowing and heavily decorated saris and Punjabi suits with corresponding stoles.  Bright colors match their upbeat bright personalities.  Mr. Singh is a delight, always cheerful, and forever positive.  He continues to be my inspiration as he has been a paraplegic longer than me.  He has been injured eighteen years, he has restored sensation, bladder, bowel function, and muscle development in his legs.  Last week he and his wife, Geeta, gave Mum and me a colorful red sting, which they wrapped three times around our wrists and then simply tied a knot.  This is kalawa string, which is supposedly holy string and brings good luck according to the Hindu faith.  We wore our strings for a week and began to wonder what the red blood stains were on our towels and sheets.  Today we figured it out…the culprit:  the kalawa string!  Much to the distain of the lady who manages our housekeeping, we exchanged our stained towels for clean ones.  We then cut the string from our wrists.  The luck shall have to stem from my new embryonic cells and our minds.

Mum and I respect Dr. Geeta Shroff and Dr. Ashish Verma implicitly.  They are performing life-changing procedures and are bringing hope back into people’s lives.  I am humbled by their genuine care and concern for every patient they work with, their integrity, their optimism, and their vision for the future.  It is Dr. Shroff’s goal to have someone as influential and caring as Oprah share her revolutionary technology with human embryonic stem cells with the world.  She hopes to bring her expertise to the forefront…and educate and inspire others to believe, and benefit from a better quality of life.  

Thank you to my friends in the Roaring Fork Valley for your encouragement, love and ongoing support.  

From our little bedroom with a candle burning in a back street in Delhi,

Amanda and Mum (Jill) xoxo