Archive | October, 2014

Puja

30 Oct

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For Hindus Lakshmi is the four armed goddess of wealth and prosperity. During Diwali she is prayed upon to bring this good wealth and prosperity to both the home and work place. In preparation dwellings are cleaned and sand like paintings called “rangoli” are drawn at the door steps to welcome her. In the evenings diyas and candles are lit.

After my morning physical therapy session I am summoned to the main floor injection room for a deep skeletal muscle injection (DSM). Dr. Shroff has expanded her applications of stem cells for all patients. On my previous treatments these type of injections were reserved mostly for the spinal cord injury patients. I have watched my friends receive these injections and know they fall somewhere between the daily intramuscular shots and a caudal or epidural procedure. The needle is the same small insulin syringe used for the daily intramuscular shots but like the procedures is injected along the spine. Today will be my first DSM ever. I am apprehensive but know I am surrounded with the best people I can be. The anesthesiologist, Dr. Mishra has me sit and finds a spot on my lower back along my spine where he then injects the dose of stem cells. It is not painless but it is not painful either. I must admit I am distracted because the lobby is being set up for the puja ceremony, which I always look forward to. The more routine daily injections follow, one IM in my arm and an IV push of stem cells too. Then I hurriedly return to my room and dress in my Indian attire.
Each year Dr. Shroff holds a puja ceremony for the hospital in celebration of Diwali. As I make my way into the lobby it is already filled with the hospital staff and patients. Dr. Shroff and her husband sit in the middle with a Hindu priest. The priest speaks in a continuous rhythm. Dr. Geeta and her husband place offerings, there are lots of marigolds and yogurt and fruit involved. Then each person in the room is blessed with a red dot on their forehead and string tied around their wrist. Dr. Shroff is very inclusive during the ceremony inviting any patient who chooses to go to the altar to participate circling a plate with a candle around the altar offerings. The taste of Indian culture unites the hospital, staff and patients alike. This is part of what keeps me coming back to India.

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The revolving door that is my room

28 Oct

Oh the revolving door that is my room. My back still feels fine after the procedure yesterday but I am exhausted. All I want is a nap. 30 minutes to recharge and allow my baby stem cells to do their growing and healing. Not a chance. If the door is not opening my room phone is ringing. I am not even the intended contact nor is anyone in my room at the time of the call. By late afternoon I am done. Either I start screaming at the top of my lungs or run away. My mom and I choose the latter. One of our favorite markets is lit for Diwali with strings of lights and decorations. We wonder around the market and return to the hospital for dinner. As the natural light fades riding down the streets in a tuk tuk become like driving through neighborhoods in the states looking at Christmas lights. The major difference — in India lights are hung vertically like a waterfall. I needed the break and the lights are a most pleasant surprise after an overwhelming day. I have been here for Diwali before but I was not well enough to go out and see the lights. Now I am.

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It’s procedure day!

28 Oct

I am ready to receive my first procedure of the trip. In contrast to the daily intramuscular arm injections, procedures administer the largest quantity of stem cells directly into the spinal column. These procedures often yield the most noticeable changes almost immediately. Today’s procedure, a caudal, is an epidural type injection at the base of the tailbone.

The day starts with physical therapy where I do more than usual in anticipation of being stuck on my back post-procedure. I even do modified jumping jacks – no arm motions. I am winded when I finish but do not get to rest. I am sent for yet another test at a facility a few buildings down the street. The test is an eeg and goes quickly enough. Back at the hospital I do not get to eat lunch, it is too close to procedure time. The sisters apply an anesthetic cream to the base of my tailbone, ok butt crack, and cover it with tape. This protocol is newer. The IV antibiotic monocef is administered and once complete I am on a gurney and wheeled away onto the external elevator. This elevator lift is a new addition since my last visit and is long enough to fit a gurney and several operating theater staff. Laying on the gurney I can say the ceiling of the lift is a very clean and modern in design. I am wheeled into the OT where I instantly recognize the two sisters. They talk to me and turn on music. Today’s selection, jingle bells. Christmas in October I joke. NuTech now has two anesthesiologists who rotate doing procedures. Both are highly skilled and capable and give each patient an orientation when they first arrive. I have Dr. Nayan. He is a man of few words but informs me of the important information while a sister makes conversation to distract me. First he cleans my backside and then gives one injection. That is the only pinch I feel from then on it is only light pressure. Unlike the anesthetic used previously my legs do not feel as though they have lost feeling. For someone who can feel it is a huge relief not to need to check that my toes can still move. This is by far the easiest caudal procedure I have had. The entire process is completed within minutes. There is no traveling between Dr. Shroff’s hospitals now. All procedures are done at the Green Park location. Once back in my room I am to stay flat on my back for the next hour. That is it. Then I can move as I please. Immediately though I feel the nature’s call. Isn’t that the way it always works, when you are not supposed to move you feel the need to. Once the hour is up I move freely. I can sit up to eat my lunch. I do not have a headache but I rest for the remainder of the day knowing it is what my body needs to process the large dose of stem cells.

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Testing day

23 Oct

I am running on adrenaline as I wake for the day I know will be filled with testing. Dr. Geeta is at my door before I am out of my pajamas. In my defense the door began revolving a good hour before her arrival. The morning blood pressure check, a doctor taking history, breakfast and even housekeeping.

Today’s testing agenda: SPECT scan (of course), abdominal CT and ultrasound and an extentsive blood. Basically poking and prodding. The scans are be done at Fortis hospital. To my dismay the singing nurse who has administered the tracer for my previous SPECT scans is not there. Instead the tech tells me “close eyes and close lights.” I cannot say it was a quiet room while I rested for the scan, but I was tired enough to take a nap. Dishes clanged in the background (presumably from lunch) and what can best be described as an air raid siren blared several times from the nuclear medicine department down the hall. From there I am guided to the next set of tests. The CT and ultrasound are involve more waiting but are straight forward. Once complete the Fortis man who drove us to the hospital reappears to usher my mom and I back to the car and drives back to NuTech. Usually test results have a quick turn around, hours to one day. But it is Friday so my results will take longer. Once in my room I get a blood draw and stem cell shots in the my arms.
My veins have been hard to find the last few years. They hide, they know what is coming. Luckily my body allowed my veins to show and each stick attempt today hit its mark. All of my main veins have been used in the first 12 hours of my treatment. The poke total this day is 8.

PRICING FOR TESTING IN INDIA: OCTOBER 2014
SPECT scan Rs.14000 $227.92
Full Abdomen CT Rs.12950 $210.83
Lower Abdomen Ultrasound Rs.1050 $17.09

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Home sweet Delhi

23 Oct

I am home again! 3 years away seems like a lifetime. Much too long. The Delhi airport is complete. Art and beautiful hand sculptures greet those entering through customs. Airport wheelchairs look to be abundant, good to note for those needing assistance during travel. The hospital looks the unchanged and foreign at the same time. In the lobby signs mark milestones for NuTech, 10 years and 1000 patients strong. We are taken upstairs to a room I know well. It is the same room I shared with my mom our last trip. Some of my favorite people have stayed in this room as well. Once settle my body does not care I am in an industrial hospital bed. It feels safe, comfortable even. The bed is nothing like mine at home, yet it is just as familiar. The sounds of Delhi come like waves. Horns and cars ebb and flow while drifting stray dogs bark protecting their territory. Half way around the world an ocean of a different kind lulls my traveled body. I sleep like a baby.

The morning brings faces, both old and new, chaos and a revolving door. I am welcomed home. Today I am allowed to rest and greet the sisters, tomorrow tests will be preformed and treatment will begin.

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Reminiscing in preparation for my return

22 Oct

I’m headed back for more treatment. This time on my terms not out of desperation, or doctor or even parent direction.

I approached my parents. I contacted Dr. Shroff on my own. I chose the flights. For the first time I set the trip in motion.

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Packing for my return I reminisce on all that brought me to India the first time. 7 years seems like long ago. At the time I was so young, Dr. Shroff had my parents wait until I was 18 to bring me to India (Dr. Shroff now takes patients younger than 18). I still remember the news as the best birthday present ever. My Lyme ravaged body was catching up to my already deteriorated brain. I could barely speak. I could not read or write. Fatigue and pain were constant. Ripping bartonella pain was taking away my ability to walk even the short distance to the bathroom. Treatment efforts had become ineffective. The pain medications covered a fraction of my pain, a fact I tried to hide.

Back then Dr. Shroff had her patients stop all medications before undergoing her stem cell treatments. I could not go without medications at home but for stem cells I stopped everything. This meant going off cold turkey for most of the necessary prescriptions. I would not recommend doing this then or now. I was incredibly fortunate that I did not suffer any withdraw effects. At least none that could be deciphered through my Lyme symptoms.
I went to India in a wheelchair. And although I could walk some I returned home in a wheelchair after 3 months of treatment. Medications that had stopped working to treatment my condition were becoming effective again. However, within 3 months of returning home to the states I was in need of more stem cells treatment. This came much earlier than expected but again my mom and I made the journey to India with me in a wheelchair.
I made the same journey two more times. My last stint left me with an able body and mind ready to relearn how to live.
Stem cells heal damage. They must be taught to live to flourish.

I spent the next years learning and relearning how to live. Sometimes I fell down sometimes I moved mountains. I was able to return to school. Though I was by no means out of the woods and healed, I had an immune system ready and willing to work for me.

My brain raced with all of the new knowledge. It over fired leading to new challenges.
Treating bartonella left me with CIDP.
And over this last year my adrenals became ineffective. Adrenal insufficiency made me dependent on steroids to remain able to function.
Yet I still managed to move out and live with some assistance but growing in independence.

And this is where I now sit on my apartment floor packing my last few items in preparation to leave for India once again.