Tag Archives: Lyme Disease
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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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A procedure to remember

20 Oct


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My second procedure of this third trip and all went well at least my back seems to think so. It was just an epidural on my lower back.

This procedure was different from what I’m used to. It was later in the day when I was wheeled into the OT at the Gathum Nager Hospital. I was one of the last patients of the day, from the other hospital, so the room was quieter. Dr. Ashish and his staff were on the ball, just not a chatty as usual. For me, I like them chatty, it’s a distraction from the needle being poked into my spine. But this time the distracting was up to me. I thought of happy things that made me smile and envisioned I was being given a big warm hug. The kind of comforting hug where in that moment anything you feel doesn’t matter, all you feel is love.

See as the patient, a big part of the experience during procedures is how prepared you are mentally. Before my very first procedure I only knew what I read from Amy’s blog, what the doctors explained to me, and what the other patients told me. I was only the second patient with Lyme getting the treatment and the other patients in the hospital at the time were mostly spinal cord injury patients who couldn’t feel the procedures. I had no idea what it would be like. Amy told me it wouldn’t hurt too badly and I trusted that. My friends there said it didn’t hurt and not to worry about it, but they couldn’t feel at the level of the procedure. Looking back it was probably the best thing to be told. I knew it would probably hurt but the only thing I went into the OT at Gathum Nager thinking was what does the hallway going to the OT really look like? My friends were discussing it one day and they said it was like a movie scene. All you really see is the lights and the ceiling as you are wheeled down the hall on the gurney.

Now with Dr. Geeta taking more patients with Lyme as well as patients with many other conditions, more people are feeling and telling what the felt during procedures. This is hard, it is good but at the same time patients, especially the new ones are easily psyched out hearing that the procedures are painful. Even patients who can’t feel were telling me they were freaking out going into the OT. What if they did feel the procedure and it was painful? If you ask those same patients what progress came after their procedure and was it worth it?

After procedures Dr. Ashish tells me I was a great patient. He always tells me that, but this procedure he was more enthusiastic. You didn’t yell or move, or anything. This puzzled me and I questioned him once. He told me patients had been jumpy on the table and would yell, particularly the Lyme patients. Hell, I don’t blame anyone for yelling! I want to yell too on that table and run out of the room. Don’t look at those needles, I did once and have to chase it out of my head every time. But STOP!

YOU MADE THE JOURNEY FOR HEALTH. You are in the right place, so yell all you want to on that table (sorry Dr. Ashish’s ears). It will hurt but not for long, and that pain is different if you feel it, you will see it is, that pain it worth it. It has stem cells, the possibility for less or no pain in your tomorrows. So what if you hurt a little more today?

Patients with Lyme and some with other conditions are in massive amounts of pain going into the procedure. Besides that everyone has a different pain tolerance and different way of reacting to pain. This I know. I also know that if you think it will hurt, it will hurt, and hurt more.

So to any patients getting procedures do yourself a favor and think about this before you start getting all worked up. Go into the OT happy and smiling to accept your new baby stem cells. Talk to the nurses, the OT staff, and Dr. Ashish too. Let them distract you, or distract yourself. Have a positive attitude and relax. Just like tensing up during a blood draw, it hurts more and stress’ the body more if you tense, so relax your muscles and your mind.

It is hard. It can be scary. It feels different. It hurts. It is worth it.

The first thing my baby stem cells got when Dr. Ashish injected them into me, this last procedure, was the feeling of a big warm hug. The greatest hug and I have to say it’s the best procedure I’ve had. The hardest thing about the procedure was staying in bed for hours after and not running out to get ice cream or something. I think I’m feeling better.

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Diwali

18 Oct

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Diwali is the Hindu festival of lights. Diyas are lit and firecrackers light the sky.  The excitement builds and everyone turns into children again waiting, wanting, the bangs, pops, and cracks of crackers. Ceremonies are held, prayers are said and red strings are tied on wrists.

The last time I was here in India was Diwali, 2008, but for me it was long. I woke up in pain, as I did most of that trip, and as I remember I ended up bawling my eyes out when Dr. Geeta came for rounds. The pain plus the fact it was that time of month and the emotions from the stem cells were all just too much. I was a wreck. That day the prescription for me was primrose oil and lots of chocolate. Dr. Geeta actually had one of the doctors go out and get me chocolate. “We are having a celebration downstairs and we want all the patients to join us”, she told me. I sucked up my bad day and went down to the lobby with all the other patients not knowing quite what to expect.

This Diwali, 2009, I knew what to expect and I couldn’t wait. At the hospital the prayer ceremony was held a day before for the patients and staff. Everyone gathered in the lobby. The female staff dressed in beautiful saris and suits. This year I wore an Indian suit too, which is a tunic, pants, and a scarf, for the ceremony. The prayer was for prosperity for the hospital and patients. Hindu or not we were all blessed and received orange on our foreheads and a red string was wrapped around each of our wrists. The red string I had worn from last year had fallen off just days before my trip back to India began and I missed it. For me I wear my red string with pride, knowing it not only carries a prayer but it is my reminder everyday of where I have been. It carries the memories and love from the hospital and all the people I’ve met on my journeys here. That’s what I love about India, the people enjoy sharing their culture and traditions.

In my room, the night before Diwali, the focus was drawn away from the upcoming festivities. My lower back, just a strip, had a warm sensation. My mom put her hand on the spot, it was warm to the touch too.  I sat down unsure of what the warmth meant for almost in the center was the site of my procedure 5 days before.  The feeling of warmth spread up my spine as if from the inside. I felt the warmth move each individual vertebra from the bottom up. Subtle adjustments, not pain, just a feeling of each one tipping slightly as if my spine were realigning. “Mom something is happening it’s… weird,” I say “it’s kind of freaky.” Her face is confused and needing more description than freaky or weird. Retracing? The feeling settled in my right shoulder blade as I went to sleep. “Midnight it’s Diwali”, my mom whispered with a smile as she wrote down my newest change.

The morning of Diwali I woke up excited about the nights festivities. It was the first day of the five-day festival and surly the loudest day. Through out the day I got a feeling of my ribs closing around my organs.  My breath shortened from the awkward feeling. I could breath fine but my lungs felt cramped as what felt like realigning continued. It was the second or third time this Diwali day I had this feeling. I got up from bed once it subsided. My mom looked concerned but it was time for all of Delhi to explode in crackers, Nu Tech included, as they lit up the sky and their cracks echoed from all around. It’s something about the noise they like here, not so much the pretty colors but defiantly something one cannot miss. What ever it was, the sensation I had been having all day, would have to wait it was time for the crackers. This year I wasn’t missing them, I went outside with the other patients to watch, it was well worth it.

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Couch no more

29 Sep

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As I sit preparing to pack for my return to India, I am well aware of why I’m going and know what I’m leaving.   It is harder to go back this time.  I am enjoying myself here, not a life on the couch but a life outside in the world, with sun on my skin and wind through my hair.  No, I’m not describing my mother driving me on the couch down the freeway, though I am sure she has contemplated doing just that.  I leave my life, that of a teenager, which I have not had in many years.  I leave my friends, family, and pets behind.

That is my world, India is my adventure, my journey to wellness, a promise I made to focus on my health even if that means leaving all else.  My friends will still be here when I return.  School is on hold.  Pets and family will continue their lives, slightly altered as my mom and I journey to India.

I go to India for only 4 weeks of stem cell therapy this time.  “Oh that’s a long time” one friend said at the news.   Not all of my friends are accustom to my coming and going.  It is hard to understand how one can so suddenly pickup and leave for months at a time.  Friends with Lyme or long-term illness understand the necessity.  You find the treatment that works best for you, wherever that may be.  Before India, it was hyperbaric oxygen therapy and before that, it was hockey therapy, haha.  I.V. antibiotics have been the constant and most effective over the years for me prior to stem cells, though I have done homeopathic, hyperbaric, to antibiotic and everything in between.

“That’s short,” another friend told me.  That friend comparing the lengths of my previous trips to the one I prepare to depart for now.  Five months total out of last year in India, my first trip being three months, two the second and two in for hyperbarics the year before that.  This friend knows I must go but also knows where I have missed pointing at a picture I am not in, of a celebration I should have been at.

Now I sit in the afternoon sun reading a book or I go skating with friends.   Yes, my newest improvement I can read and remember what I read!  I find it difficult to want to go to doctors appointments.  I have done minimal treatment, stem cells aside, over the past year because the doctors don’t find it necessary.  I can write and with the confidence to write a blog.

The stem cells work.  That is why I return, that is why I leave.  I go with no expectations other than for another adventure in a place I truly love.  I will see friends, some like family, and make new ones.  I am ready for the road ahead.  Worlds away from home, it is for sure, the path less traveled.  A journey not to be taken lightly. I know how hard it can be to retrace and relive the worst of my worst days.  I know the hard work and effort needed and welcome the challenge once again.  I go with an open mind, ready to bloom, a smile on my face.

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