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Week Three: November 2 - November 8, 2008
DAY 12: SUNDAY, November 2, 2008
No Daylight Savings in India, but did you all remember to set your clocks back last night? Today there was no PT, since it was Sunday. Kasie did have another infusion (IV) stem cell treatment this morning; and then an injection this evening. Instead of just sitting around the hospital today, we decided it was time for a bit of adventure. Kasie talked Elaine and Julie, into joining us. So what should we do, where should we go…ah, in search of the elusive white tiger…where could we possibly find one in Delhi? Well, the zoo of course, or so we thought.
The NZP, National Zoological Park in Delhi covers 214 acres. It is one of the finest zoos in Asia and while it is a standard type of zoo, it strives to provide some very natural like settings for its inhabitants. The NZP is home to more than 2,000 birds and animals; primarily Indian and Asian natives, there are also animals from Africa, North and South America, and Australia. The exhibits and habitat enclosures for the animals are actually fairly large, larger than some I’ve actually seen stateside in some cases. Lots of birds, monkeys, deer species, bears, etc. As for the lions and tigers – we seemed to have missed them, because they started to put the cats away at about 430pm, even though the park was open until 6pm; so by the time we had made our way around to that side of the park, it was about 430pm and they had already been brought in, go figure.
But had we gotten to see our white tiger… (sort of)
this is the one from the Delhi zoo. Ah, the internet…(photo of White Tiger @ Delhi Zoo by Kamal Kishore)
DAY 13: MONDAY, November 3, 2008
Today was a busy day in PT. This morning of course the standard stretching and core exercises; and then standing without her calipers, she’s getting really good at that! Today, I think was by far the best I’ve seen Kasie ever stand without her calipers. She was tall, straight, well balanced, and well weighted on her legs…the parallel bars seemed only to be there as an afterthought. And she stood that way with her knees locked and Shivani there for more moral support more than anything else for about 15 minutes. Great!
So a frustrating part of being here is that they are always seeming to rush Kasie, and then make her wait…actually I see it with most of the patients. Some of it’s the culture and language barrier thing. And some of it, I think, is that because these patients do tend to be so mobile, the sisters often don’t seem to understand that there are limits to their capacities and speed. And that often the patients need some extra time to get things accomplished due to the less than fully handicap accessible rooms and such. Plus, it’s also a matter of planning…often patients feel they haven’t been informed of what is happening next, even when they have specifically asked about something… and then at the very LAST minute, they are told they need to be somewhere right then and there…well it’s really not that simple and the sisters do seem to forget that. Things take time in India…and then of course the waiting for the elevator – which inevitably fails when she needs it, or is being used by someone else, etc…
So even though our girl was feeling frustrated, and a little distracted with hunger, her afternoon PT session was fabulous! She of course strapped on her calipers and walked out to the infusion room and back with her walker. Then she did the parallel bars: front, back, and those dreaded sidesteps. But then after all the walking it was back to some mat exercises. Once again she did some squatting. But then she and Amanda talked about the squatting, and Amanda showed Kasie how she has been doing it…on a harder surface than the padded mat, and spreading her feet so a PT doesn’t have to support her knees…with that little bit of guidance from someone who has first hand experience herself in learning how to do that exercise, Kasie got it. It’s a squat, and then an extension towards a standing position. And while she didn’t get to a fully standing position, and it was a bit wobbly - it was the first time she’s done it, so there’s a bit of a learning curve at this point…but it was phenomenal.
You Tube Video Link Kasie 1st time standing from squat
After PT today was the monthly doctor, patient, caregiver meeting. It is an open forum session for everyone to ask questions, share experiences, etc; because there are a lot of new patients as well as returning patients who are interested in hearing about the progress or issues and concerns of each other. It was very much like the meeting I wrote about last time we were here, so I won’t cover all the same stuff about how stem cells work, etc. (so if you don’t remember it all, please refer to…the following pages: Stem Cell Research & Therapy and/or Week 1: Day 7, March 7, 2008 – for meeting notes).
Dr. Geeta Shroff and Dr. Ashish Verma at patient meeting
Patients, caregivers and staff at patient meeting
Kasie and Dr. Geeta and Dr. Ashish
Anyway, the meeting began with patient introductions – you know, names, injury level or disease and what kind of results they are experiencing with the treatments they have been receiving, either this time or over the course of repeated visits. Of course our shy girl, Kasie clams up.
I know that’s hard to believe; and had I not experienced this with her time and time again this past year, I wouldn’t believe it either. But yes Kasie is shy when it comes to someone putting her on the spot, handing her a microphone, doing an interview, or speaking to a room full of people. Both Dr. Geeta and Dr. Ashish realize she is shy in this regard; and kid her about it a bit…but it rarely works to elicit more than, “Hi, I’m Kasie…”…so I had the pleasure of once again introducing Kasie and speaking a little bit about her SCI and progress since her initial stem cell treatment to those who didn’t know her yet.
Dr. Ashish (Verma) told everyone that the patients and THEIR results are proof that the stem cells are working.
A question came up of the different methods of injection – intramuscular or infusion (IV); and Dr. Geeta (Shroff) explained that just like a drug, there are different routes to administer an injection. The IV mode is the quickest, and the IM slower; but the route when it comes to stem cells doesn’t really matter because the HESC (human embryonic stem cells) will find the damaged area that they need to get to. Of course the best route is actually doing an injection at the site of the injury; but that is not always possible because that does generally require a “procedure.”
Just a quick refresher: the procedures are given at, above, and below the injury site depending upon the needs of the patient and what results they are seeing from standard IM and IV injections. The types of procedures are: Caudal – where the injection is given directly into the spinal column; Lumbar – where the injection is given directly into the spinal CORD, not necessarily in the lumbar region of the spine; Epidural – a catheter is placed into the spinal column, and injections are given at various levels over several days.
Dr. Ashish talked about that the stem cells first will repair “dormant” cells that are morphologically intact, but just are not working. The stem cells go to those cells and provide what is needed in those areas. The gauge needle – generally a 29.
A question came up whether or not they are doing control studies. Both Dr. Geeta and Dr. Ashish said they don’t believe in control studies because essentially it is unfair to the patients because they are not receiving something that can be helping them. They’ve seen too many placebo studies conducted that only give false hope. They believe the “control” in the case of their stem cell patients is the diagnosis itself. So all the patients being treated at NuTech do receive stem cells. The only exception has been a few patients who were initially too to be treated with stems cells, and were given 2-3 weeks of only PT, and no stem cells and saw no improvements. They compare that to all the other patients who receive stem cells from the beginning, as well as PT and see some changes right away. Also the excepted patients who had seen no improvement on PT alone, did show changes once they also received stem cells. One of the patients commented on that they have been doing therapies for years and seeing no improvements, but once they received the stem cells they started to feel tingling sensations that they had not experienced before…and were getting stronger, something their PT programs at home had not been able to accomplish.
Something new that neither Kasie nor I had heard for before, was that the Doctors do not recommend having an MRI or even an X-ray, after the stem cell treatments, because they are not exactly sure what effect that would have on the stem cells. They are concerned that the magnetic imagining and radiation could be harmful to the stem cells. They do understand that some patients might want to see if there is a change to their scar tissue mass, etc…however, they believe that the difference after just one or two treatments would be so minimal, and the risk of damage to the cells stems is potentially too great, that it would be better to wait 3 – 4 years before undergoing MRI’s and X-rays. Once again, the idea is to treat the body like it was pregnant; unless of course there was an emergency and a need for those procedures they prefer the patients do not undergo them at this point in time. Good to know.
There has been a slight change in the “formula” of the stem cells being injected, in so far as the concentrations of stem cells in each injection is much more concentrated now than in the past.
So since I’m touching on this subject once again, and some of you may be reading about this for the first time, and because (HESC) human embryonic stem cells can be such a controversial topic – especially in the United States, and because there was a question at today’s meeting about how Dr. Geeta’s work began...; I thought I should take a moment to explain in fairly simple terms that the same original embryonic stem cell line, which was established as a result of Dr. Geeta’s in vitro fertilization work, is still being used. Dr. Geeta’s in vitro patient and her husband conceived twin girls as a result of their egg and sperm ‘donations’ being combined in the lab in a petri dish. The petri dish was used to create potential embryos to be implanted in the womb of the woman; two of which were successfully implanted. Those two embryos both “took” successfully and as a result the woman conceived twin girls. As per standard medical protocol, even in the United States, the remaining, unused embryos were considered biological surplus material. Yes, it is true that often those surplus embryos are frozen for future use by the donor couple, but it is also true that often those surplus embryos are just destroyed as biological waste. Here in India, it is extremely costly and extremely rare for the surplus embryos to be frozen for future use. Therefore, once the patient and her husband decided they did not need the surplus embryos, they decided to donate a single surplus embryo to Dr. Geeta Shroff to create a stem cell line for research and treatment. That’s it in a nutshell. (Please see Stem Cell Research & Therapy for more information).
Anyway, to date Dr. Geeta and Dr. Ashish have treated 562 patients, including members of their own families. The success rate cannot be defined as many skeptics would like it to be, because according to Dr. Geeta, it is highly individualized. The bottom line according to Dr. Geeta, (as well as the patients and caregivers I’ve spoken to) is that even a 1% change in a static injury (SCI – spinal cord injury) or stopping the progression of a progressive/terminal disease is a “success.” It goes to the quality of life and overall change for the individual patient...and there really is no way to measure that by anything other than the individual themselves. What they feel, how they feel, what they are now able to accomplish, additional strength, additional hope, etc., all play into their progress. There was a question about whether patients ever “gain” something from the treatment, only to “lose” it again. For progressive diseases (like Lyme disease, diabetes, etc.) they apparently do see ups and downs. However, with SCI patients once they regain something - they have it, as long as they nourish it and continue to do PT and take care of themselves. The only glitch that seems to have been reported is that of the bladder function. Apparently if the patient gets a UTI (urinary tract infection) it can cause them to lose some of that control they gained; but once treated and the infection is gone it should come back again.
So some really exciting news was the discussion of a recent patient who came to NuTech to be treated after only 1 and ½ months after her accident. She was 50+ year old Indian woman, who was in fairly poor health even prior to her accident. She suffered a complete T4/T5 SCI – no feeling, or sensations in her legs, loss of bowel and bladder, etc. After her initial stem cell treatments, she has gained “everything back”. This very much interested me as I’m sure you can imagine. So I spoke with Dr. Ashish and Dr. Geeta more about this after the meeting because I didn’t want to monopolize the conversation. As Dr. Geeta and Dr. Ashish have said previously, the sooner they can treat someone with an SCI the better they believe the results will be. But the skeptics have always be a challenge when it comes to early treatment as well. Because often the skeptics and experts say that certain feelings and functions may come back anyway and there is no way to make the distinction between what might have happened anyway, and the treatment by stem cells. So there actually have been very few patients who have been treated with stems cells Apparently when they say “everything” they truly mean it. This woman has complete sensation in all of her body at this point. She is currently walking with the aid of calipers and a walker because her bones are still healing and she is also suffering from a lung infection as the result of her accident. But other than that, she has full bowel and bladder control, full sense of touch in her legs…she essentially has fully recovered. This is very promising; as the Doctors see this as more proof that the stem cell treatment does work. Eventually they hope these kinds of results, as well as the progress and successes of all their patients will help lessen the criticism of skeptics. Up until now Dr. Geeta and Dr. Ashish have been very weary of taking in patients in too soon after their injury, because skeptics often say, well they would have gained that back anyway. But the reality is, that the sooner patients, especially those with SCI’s receive treatment, the quicker and more full is their recovery. Dr. Geeta and Dr. Ashish, hope that someday stem cell treatment will be protocol for SCI’s at time of injury, or shortly thereafter.
DAY 14: TUESDAY, November 4, 2008
Election day for all of you back in the states…don’t forget to vote.
PT today had more progress with standing without her calipers. She stood for a long time with minimal support, like in fact she only used 1 finger on each hand to give her that little bit of balance/support on the walker itself…and no calipers….she also tried it using a cane. Geeta is having Shivani prep Kasie to try walking without the calipers.
INSERT VIDEO 5138 - pending You Tube upload
This afternoon, after PT; Kasie and the girls went out on their own for a bit, a good day to just get out and about.
DAY 15: WEDNESDAY, November 5, 2008
It has been interesting being here in India just prior to the 2008 Presidential election. I must admit I have NOT missed all the repetitive campaign ads, the negative rhetoric that was so often misleading - by both campaigns, and the constant barrage of coverage of things that were so ridiculous and irrelevant to the actual issues at hand through every media outlet available. After such a long run for the White House by both political affiliations it has finally drawn to a close. I voted before I left…and as far as I can tell most of the US patients and caregivers did also. And I just read in “The Times of India” that the 147,000 Americans that live here in India could cast their votes at the US Embassy here in Delhi – who knew. Anyway, we awoke to the still pending, but rather apparent news about who the new President of the United States would be. And now we know it is official, President Elect Barack Obama. What a historic day for the United States, no matter what your personal politics are, it is a change and a new beginning for our country on many levels.
Every new beginning comes from some other beginning’s end. Seneca
Today, Kasie had morning PT, and I packed up our stuff for the next three days because after PT we were headed over to the other hospital at Gautam Nagar. We will be here for three days, while she has an Epidural (spinal column with the catheter) AND a Lumbar procedure combined. She hasn’t had a combined procedure before and is a little anxious. She’s got the small windowless room again, definitely not ideal for a 3 day procedure…tough even just with a 1 day. I can come and go and get out and get stuff she may want; but for Kasie when she has a catheter in her back for the 3 days, she’s not even allowed out of the room because they don’t want to risk infection. So she really is couped up in a dark, dank, dreary room…and the lighting – fluorescent is obnoxious.
Kasie had been gone for more than 2 hours…and has just now returned from the operating room. They are carrying her back into the room on a stretcher because they couldn’t get the gurney in here with the angle of the hall and doorway. They have gotten her positioned – on her back, on the extremely uncomfortable bed, poor thing; and have elevated the foot of the bed with 2 bricks. She is not to eat for 2 hours; at about 6:30pm (4 hours and 45 minutes) she’ll be able to roll over her side; but she cannot sit up until tomorrow. She wants no one to come into the room after the staff leaves. Kasie tells me the pain was excruciating during this procedure…and that she wants to write about it herself when she can move… so here’s what she had to say herself:
Today’s procedure was by far the worst one I have experienced, I had the EC (epidural catheter); this is where a tube is inserted into the spinal column. I also had the lumbar at T-6; this is when he inserts the needle into the spinal cord.
Dr. Ashish put me on the operating table on my left side with my knees at my chest and my back facing him. He wiped the area that he was going to be injecting. The swabs are very cold and my back is hyper sensitive especially at the site of the injury, Dr. Ashish is aware of how low my sensitivity goes. After the area is completely wiped down, he starts the procedure.
Dr. Ashish numbs the area before inserting the epidural and the needle. Although I am numb from the spinal cord injury, he still numbs the area in case there is a slight chance I may feel something, that could be very painful! I do feel a little pressure from that. As he puts the tube into the spinal column, I do feel it hit the bone sometimes, it is a strange feeling and I do not feel it often. It took Dr. Ashish a while to get the tube into position. I was getting very hot, and I was not breathing as I should have been. I get very nervous during this process as I have to lay very still, and with two other people holding me in position and one sister to hold my hand (as you can imagine, I am not as tough as I should be). Before he started the process of inserting the needle into the T6 section of my spine, I asked if I could breathe, Dr. Ashish laughed, I should have been breathing the whole time but I was too nervous. He was constantly asking if I could feel anything, after many times of him asking and me telling him no, it finally hit me! The pain was unbelievable. I instantly started crying begging him to stop, he told me no, that is what he wanted, he wanted me to feel something because he knows that he has hit the right spot and the stem cells are working! The pain was a burning/shocking feeling only on the inside of my body and down my left side, and all the way down my leg; it was the first time for this kind of burning, and that I have ever felt my leg the same as my upper body. However, I thought I was having a heart attack. Dr. Ashish asked if I were ok, I told him “NO!” I honestly felt like I was not ok. I am not sure as to how long the pain lasted, it seemed like forever but as soon as the burning went away, the assistants rolled me onto my back and I was fine. Dr. Ashish was filling out a chart, and heard me laughing, he asked if I were crying or laughing he could not believe that one minute I was crying then the next laughing!
I told him that I wanted that procedure again, he asked me “why, during the procedure you tell me no no no stop! Now you want it again?” I told him “NO PAIN NO GAIN!”
Now up to my room to lay still until tomorrow morning!
The intensity of the procedure, along with the anxiety before the procedure is extremely exhausting. When I arrived in my room, I only wanted to be left alone. I did however fill Sonia in on the events. Only, I do believe my exact words were; “This one %*#&ing hurt more than anything I’ve EVER gone through in my life, I almost let out a Mother %*#&er when he hit the spot! “
For the next three days I will be laid up in bed getting stem cell injections through the port in my spine. The injections are not painful, I will only have to lay still for two hours after each injection.
So there you have it. Here’s just a little more about the procedure from when Dr. Ashish came into check on Kasie. The first part of the procedure was the Lumbar puncture/procedure at level T6, which is above her level of injury. He goes in through the spinal column and then directly into the spinal cord to insert the stem cells there. After that part of the procedure was complete he then did the Epidural Catheter where he went into the spinal column at T12, below the level of injury and insert a catheter up up the level of her Thoracic spine to about C5 in fact. The remaining tube which is strapped to her back and then run up over her shoulder with a port is secured to her back with adhesive tape and padding. When Dr. Ashish came into check on Kasie this evening and give her the evening stem cell dosage through the port, she was in much less pain and discomfort than when she had first come back to the room. We all talked about the sensations – burning down her side all the way into her leg, pain at her injury site and below - she had felt while undergoing the actual procedures. He explained that the sensations she was feeling at the time of the procedure, at and below the level of injury, were the autonomic (ANS) nervous system – a very good thing, because it is really the first to re-develop. The ANS is a control system that allows the body to maintain homeostasis. It is the unconscious control or sensations we feel and don’t normally have to think about – things like heart rate, breathing, perspiration, pupil dilation, etc. Next comes the sensory system, the sense of touch and pain and body position, all of which case is acutely aware of during a procedure and afterwards while we are trying to position her into a comfortable position that she will need to lie in for a few hours without moving. And once these two systems begin and continue to regenerate themselves at and below Kasie’s level of injury (T8, T9, T10) the expectation is that her motor skills will also come back as a result of the stem cell treatments and intense physical therapies. While Dr. Ashish was administering Kasie’s stem cell injection through her port this evening she did again have some discomfort at and around the level of injury, another good sign according to Dr. Ashish. So it’s another two hours of not being able to move, this time she’s on her left side, with the foot of the bed elevated.
DAY 17: THURSDAY, November 6, 2008
A rough night for Kasie, she was quite uncomfortable and got little sleep. When she finally had drifted off early this morning, there was a racket going on in the room above us, apparently the canteen had received a delivery of propane tanks for cooking, and were dragging them across the floor.
Then after a fiasco with the Sisters this morning, no one was allowed to come a knocking for the rest of the day, except of course Dr. Ashish, Mr. David and the food, but no ward boys asking to clean the room, no Sisters wanting to check her BP, etc…she had had enough of all of them for the time being and just needed her rest after yesterday's procedure.
Dr. Ashish came in about 1130am for her portal stem cell injection, and this time Kasie was to lie on her right side for 2 hours without moving. Again, a slight sensation of discomfort once the injection reach her level of injury, but it dissipated fairly quickly.
This evening about 8:30pm Dr. Ashish returned to give her evening portal injection. It took awhile to get Kasie comfortable, well barely comfortable I guess you could say, because this time she is to lie on stomach for the two hours. So lots of pillows, changing the position of her hips and legs, etc, until we could find a position she would be fairly comfortable in for 2 hours. Again all good signs, because she is aware of her body positioning in her legs and the sensation of discomfort and pain.
DAY 16: FRIDAY, November 7, 2008
This morning Kasie had another portal injection, but this time Dr. Ashish gave her a double dose of stems cells so she’d be able to leave the hospital earlier in the day rather than having to wait for an evening injection. This time she gets to sit up for 2 hours.
At about 2pm, the Sisters came in and removed her IV and then her epidural catheter from her spine.
It was then time to head back to NuTech. Amanda, who had also been over there for a 3 day procedure, and Kasie shared a taxi back. Michele (Amanda’s sister) and I opted to walk back because there was no room for all of us, all the girls stuff and their wheelchairs in the car.
Once back at NuTech, ah –a refreshing hot shower for our girl. And then a quiet evening in.
DAY 17: SATURDAY, November 8, 2008
Kasie only had morning PT since it was Saturday. And after 3 days of very limited movement because of the bed restriction because of the catheter procedures it was a fairly strenuous workout for Kasie, but she did great. She showed Shivani that her toes contracted a little bit more when she would tickle the bottom of her foot It doesn’t happen every time she tickles her foot though, but it is could be an indication that . Perhaps a result of the procedure adding to the repairs of the autonomic system. Time will tell.
After PT we headed out and about for the day. It turned out to be an extremely heavy pollution day here in Delhi. Perhaps the worst we’ve experienced actually. There was very heavy smoke in the air as a result of heavy burning of everything from trash, to heating (because it’s cooling off here), to sugar cane…and of course all the cars...it was rather intense. The sensation of watery eyes; itchy, burning throats and nasal membranes; and just that plain uncomfortable feeling that overcomes you with too much smoke inhalation and dirt and dust was abundant today, and there was no escaping it, even indoors you still get an overwhelming sense of it. Well since we were out in it anyway, we visited a market area and sat and people watched for awhile. We then stopped by Hauz Kaus after checking out the little village and gallery shops there with some friends who hadn’t seen it before. The “water tank” is so polluted and green now (think green like Kermit the frog). Apparently since the last time we were here the “park” and “tank” are undergoing some “biological restoration”, according to the sign…but I’m not sure exactly what it is there trying to achieve in there, except perhaps some sludge..
Anyway, afterwards we all had dinner out at Park Baluchi, an Indian restaurant in Deer Park. A “fine” dining experience in Delhi. The food, if you like curry and Indian spices is actually quite good, but perhaps a little overpriced by the Indian standards we have gotten used to. I still personally think that some of the little “street” vendor food “establishments” are a better bang for your rupee and much more tasty for somethings…but you never know with them; and with this place we at least know it is a “safe” place to eat because we, and so many others from NuTech eat there without any problems…so there’s something to be said about that for sure. After dinner the 3 of them took a ‘taxi’ home because with Kasie’s wheelchair in the front passenger seat, and the 3 of them in the back seat it’s a tight fit for sure. But since it’s actually not that far I had a nice walk back through the park, and only had to climb one gate and wall that unbelievably had been locked. Strange, but it is India.
No Daylight Savings in India, but did you all remember to set your clocks back last night? Today there was no PT, since it was Sunday. Kasie did have another infusion (IV) stem cell treatment this morning; and then an injection this evening. Instead of just sitting around the hospital today, we decided it was time for a bit of adventure. Kasie talked Elaine and Julie, into joining us. So what should we do, where should we go…ah, in search of the elusive white tiger…where could we possibly find one in Delhi? Well, the zoo of course, or so we thought.
The NZP, National Zoological Park in Delhi covers 214 acres. It is one of the finest zoos in Asia and while it is a standard type of zoo, it strives to provide some very natural like settings for its inhabitants. The NZP is home to more than 2,000 birds and animals; primarily Indian and Asian natives, there are also animals from Africa, North and South America, and Australia. The exhibits and habitat enclosures for the animals are actually fairly large, larger than some I’ve actually seen stateside in some cases. Lots of birds, monkeys, deer species, bears, etc. As for the lions and tigers – we seemed to have missed them, because they started to put the cats away at about 430pm, even though the park was open until 6pm; so by the time we had made our way around to that side of the park, it was about 430pm and they had already been brought in, go figure.
But had we gotten to see our white tiger… (sort of)
this is the one from the Delhi zoo. Ah, the internet…(photo of White Tiger @ Delhi Zoo by Kamal Kishore)
DAY 13: MONDAY, November 3, 2008
Today was a busy day in PT. This morning of course the standard stretching and core exercises; and then standing without her calipers, she’s getting really good at that! Today, I think was by far the best I’ve seen Kasie ever stand without her calipers. She was tall, straight, well balanced, and well weighted on her legs…the parallel bars seemed only to be there as an afterthought. And she stood that way with her knees locked and Shivani there for more moral support more than anything else for about 15 minutes. Great!
So a frustrating part of being here is that they are always seeming to rush Kasie, and then make her wait…actually I see it with most of the patients. Some of it’s the culture and language barrier thing. And some of it, I think, is that because these patients do tend to be so mobile, the sisters often don’t seem to understand that there are limits to their capacities and speed. And that often the patients need some extra time to get things accomplished due to the less than fully handicap accessible rooms and such. Plus, it’s also a matter of planning…often patients feel they haven’t been informed of what is happening next, even when they have specifically asked about something… and then at the very LAST minute, they are told they need to be somewhere right then and there…well it’s really not that simple and the sisters do seem to forget that. Things take time in India…and then of course the waiting for the elevator – which inevitably fails when she needs it, or is being used by someone else, etc…
So even though our girl was feeling frustrated, and a little distracted with hunger, her afternoon PT session was fabulous! She of course strapped on her calipers and walked out to the infusion room and back with her walker. Then she did the parallel bars: front, back, and those dreaded sidesteps. But then after all the walking it was back to some mat exercises. Once again she did some squatting. But then she and Amanda talked about the squatting, and Amanda showed Kasie how she has been doing it…on a harder surface than the padded mat, and spreading her feet so a PT doesn’t have to support her knees…with that little bit of guidance from someone who has first hand experience herself in learning how to do that exercise, Kasie got it. It’s a squat, and then an extension towards a standing position. And while she didn’t get to a fully standing position, and it was a bit wobbly - it was the first time she’s done it, so there’s a bit of a learning curve at this point…but it was phenomenal.
You Tube Video Link Kasie 1st time standing from squat
After PT today was the monthly doctor, patient, caregiver meeting. It is an open forum session for everyone to ask questions, share experiences, etc; because there are a lot of new patients as well as returning patients who are interested in hearing about the progress or issues and concerns of each other. It was very much like the meeting I wrote about last time we were here, so I won’t cover all the same stuff about how stem cells work, etc. (so if you don’t remember it all, please refer to…the following pages: Stem Cell Research & Therapy and/or Week 1: Day 7, March 7, 2008 – for meeting notes).
Dr. Geeta Shroff and Dr. Ashish Verma at patient meeting Patients, caregivers and staff at patient meetingKasie and Dr. Geeta and Dr. AshishAnyway, the meeting began with patient introductions – you know, names, injury level or disease and what kind of results they are experiencing with the treatments they have been receiving, either this time or over the course of repeated visits. Of course our shy girl, Kasie clams up.
I know that’s hard to believe; and had I not experienced this with her time and time again this past year, I wouldn’t believe it either. But yes Kasie is shy when it comes to someone putting her on the spot, handing her a microphone, doing an interview, or speaking to a room full of people. Both Dr. Geeta and Dr. Ashish realize she is shy in this regard; and kid her about it a bit…but it rarely works to elicit more than, “Hi, I’m Kasie…”…so I had the pleasure of once again introducing Kasie and speaking a little bit about her SCI and progress since her initial stem cell treatment to those who didn’t know her yet.
Dr. Ashish (Verma) told everyone that the patients and THEIR results are proof that the stem cells are working.
A question came up of the different methods of injection – intramuscular or infusion (IV); and Dr. Geeta (Shroff) explained that just like a drug, there are different routes to administer an injection. The IV mode is the quickest, and the IM slower; but the route when it comes to stem cells doesn’t really matter because the HESC (human embryonic stem cells) will find the damaged area that they need to get to. Of course the best route is actually doing an injection at the site of the injury; but that is not always possible because that does generally require a “procedure.”
Just a quick refresher: the procedures are given at, above, and below the injury site depending upon the needs of the patient and what results they are seeing from standard IM and IV injections. The types of procedures are: Caudal – where the injection is given directly into the spinal column; Lumbar – where the injection is given directly into the spinal CORD, not necessarily in the lumbar region of the spine; Epidural – a catheter is placed into the spinal column, and injections are given at various levels over several days.
Dr. Ashish talked about that the stem cells first will repair “dormant” cells that are morphologically intact, but just are not working. The stem cells go to those cells and provide what is needed in those areas. The gauge needle – generally a 29.
A question came up whether or not they are doing control studies. Both Dr. Geeta and Dr. Ashish said they don’t believe in control studies because essentially it is unfair to the patients because they are not receiving something that can be helping them. They’ve seen too many placebo studies conducted that only give false hope. They believe the “control” in the case of their stem cell patients is the diagnosis itself. So all the patients being treated at NuTech do receive stem cells. The only exception has been a few patients who were initially too to be treated with stems cells, and were given 2-3 weeks of only PT, and no stem cells and saw no improvements. They compare that to all the other patients who receive stem cells from the beginning, as well as PT and see some changes right away. Also the excepted patients who had seen no improvement on PT alone, did show changes once they also received stem cells. One of the patients commented on that they have been doing therapies for years and seeing no improvements, but once they received the stem cells they started to feel tingling sensations that they had not experienced before…and were getting stronger, something their PT programs at home had not been able to accomplish.
Something new that neither Kasie nor I had heard for before, was that the Doctors do not recommend having an MRI or even an X-ray, after the stem cell treatments, because they are not exactly sure what effect that would have on the stem cells. They are concerned that the magnetic imagining and radiation could be harmful to the stem cells. They do understand that some patients might want to see if there is a change to their scar tissue mass, etc…however, they believe that the difference after just one or two treatments would be so minimal, and the risk of damage to the cells stems is potentially too great, that it would be better to wait 3 – 4 years before undergoing MRI’s and X-rays. Once again, the idea is to treat the body like it was pregnant; unless of course there was an emergency and a need for those procedures they prefer the patients do not undergo them at this point in time. Good to know.
There has been a slight change in the “formula” of the stem cells being injected, in so far as the concentrations of stem cells in each injection is much more concentrated now than in the past.
So since I’m touching on this subject once again, and some of you may be reading about this for the first time, and because (HESC) human embryonic stem cells can be such a controversial topic – especially in the United States, and because there was a question at today’s meeting about how Dr. Geeta’s work began...; I thought I should take a moment to explain in fairly simple terms that the same original embryonic stem cell line, which was established as a result of Dr. Geeta’s in vitro fertilization work, is still being used. Dr. Geeta’s in vitro patient and her husband conceived twin girls as a result of their egg and sperm ‘donations’ being combined in the lab in a petri dish. The petri dish was used to create potential embryos to be implanted in the womb of the woman; two of which were successfully implanted. Those two embryos both “took” successfully and as a result the woman conceived twin girls. As per standard medical protocol, even in the United States, the remaining, unused embryos were considered biological surplus material. Yes, it is true that often those surplus embryos are frozen for future use by the donor couple, but it is also true that often those surplus embryos are just destroyed as biological waste. Here in India, it is extremely costly and extremely rare for the surplus embryos to be frozen for future use. Therefore, once the patient and her husband decided they did not need the surplus embryos, they decided to donate a single surplus embryo to Dr. Geeta Shroff to create a stem cell line for research and treatment. That’s it in a nutshell. (Please see Stem Cell Research & Therapy for more information).
Anyway, to date Dr. Geeta and Dr. Ashish have treated 562 patients, including members of their own families. The success rate cannot be defined as many skeptics would like it to be, because according to Dr. Geeta, it is highly individualized. The bottom line according to Dr. Geeta, (as well as the patients and caregivers I’ve spoken to) is that even a 1% change in a static injury (SCI – spinal cord injury) or stopping the progression of a progressive/terminal disease is a “success.” It goes to the quality of life and overall change for the individual patient...and there really is no way to measure that by anything other than the individual themselves. What they feel, how they feel, what they are now able to accomplish, additional strength, additional hope, etc., all play into their progress. There was a question about whether patients ever “gain” something from the treatment, only to “lose” it again. For progressive diseases (like Lyme disease, diabetes, etc.) they apparently do see ups and downs. However, with SCI patients once they regain something - they have it, as long as they nourish it and continue to do PT and take care of themselves. The only glitch that seems to have been reported is that of the bladder function. Apparently if the patient gets a UTI (urinary tract infection) it can cause them to lose some of that control they gained; but once treated and the infection is gone it should come back again.
So some really exciting news was the discussion of a recent patient who came to NuTech to be treated after only 1 and ½ months after her accident. She was 50+ year old Indian woman, who was in fairly poor health even prior to her accident. She suffered a complete T4/T5 SCI – no feeling, or sensations in her legs, loss of bowel and bladder, etc. After her initial stem cell treatments, she has gained “everything back”. This very much interested me as I’m sure you can imagine. So I spoke with Dr. Ashish and Dr. Geeta more about this after the meeting because I didn’t want to monopolize the conversation. As Dr. Geeta and Dr. Ashish have said previously, the sooner they can treat someone with an SCI the better they believe the results will be. But the skeptics have always be a challenge when it comes to early treatment as well. Because often the skeptics and experts say that certain feelings and functions may come back anyway and there is no way to make the distinction between what might have happened anyway, and the treatment by stem cells. So there actually have been very few patients who have been treated with stems cells Apparently when they say “everything” they truly mean it. This woman has complete sensation in all of her body at this point. She is currently walking with the aid of calipers and a walker because her bones are still healing and she is also suffering from a lung infection as the result of her accident. But other than that, she has full bowel and bladder control, full sense of touch in her legs…she essentially has fully recovered. This is very promising; as the Doctors see this as more proof that the stem cell treatment does work. Eventually they hope these kinds of results, as well as the progress and successes of all their patients will help lessen the criticism of skeptics. Up until now Dr. Geeta and Dr. Ashish have been very weary of taking in patients in too soon after their injury, because skeptics often say, well they would have gained that back anyway. But the reality is, that the sooner patients, especially those with SCI’s receive treatment, the quicker and more full is their recovery. Dr. Geeta and Dr. Ashish, hope that someday stem cell treatment will be protocol for SCI’s at time of injury, or shortly thereafter.
DAY 14: TUESDAY, November 4, 2008
Election day for all of you back in the states…don’t forget to vote.
PT today had more progress with standing without her calipers. She stood for a long time with minimal support, like in fact she only used 1 finger on each hand to give her that little bit of balance/support on the walker itself…and no calipers….she also tried it using a cane. Geeta is having Shivani prep Kasie to try walking without the calipers.
INSERT VIDEO 5138 - pending You Tube upload
This afternoon, after PT; Kasie and the girls went out on their own for a bit, a good day to just get out and about.
DAY 15: WEDNESDAY, November 5, 2008
It has been interesting being here in India just prior to the 2008 Presidential election. I must admit I have NOT missed all the repetitive campaign ads, the negative rhetoric that was so often misleading - by both campaigns, and the constant barrage of coverage of things that were so ridiculous and irrelevant to the actual issues at hand through every media outlet available. After such a long run for the White House by both political affiliations it has finally drawn to a close. I voted before I left…and as far as I can tell most of the US patients and caregivers did also. And I just read in “The Times of India” that the 147,000 Americans that live here in India could cast their votes at the US Embassy here in Delhi – who knew. Anyway, we awoke to the still pending, but rather apparent news about who the new President of the United States would be. And now we know it is official, President Elect Barack Obama. What a historic day for the United States, no matter what your personal politics are, it is a change and a new beginning for our country on many levels.
Every new beginning comes from some other beginning’s end. Seneca
Today, Kasie had morning PT, and I packed up our stuff for the next three days because after PT we were headed over to the other hospital at Gautam Nagar. We will be here for three days, while she has an Epidural (spinal column with the catheter) AND a Lumbar procedure combined. She hasn’t had a combined procedure before and is a little anxious. She’s got the small windowless room again, definitely not ideal for a 3 day procedure…tough even just with a 1 day. I can come and go and get out and get stuff she may want; but for Kasie when she has a catheter in her back for the 3 days, she’s not even allowed out of the room because they don’t want to risk infection. So she really is couped up in a dark, dank, dreary room…and the lighting – fluorescent is obnoxious.
Kasie had been gone for more than 2 hours…and has just now returned from the operating room. They are carrying her back into the room on a stretcher because they couldn’t get the gurney in here with the angle of the hall and doorway. They have gotten her positioned – on her back, on the extremely uncomfortable bed, poor thing; and have elevated the foot of the bed with 2 bricks. She is not to eat for 2 hours; at about 6:30pm (4 hours and 45 minutes) she’ll be able to roll over her side; but she cannot sit up until tomorrow. She wants no one to come into the room after the staff leaves. Kasie tells me the pain was excruciating during this procedure…and that she wants to write about it herself when she can move… so here’s what she had to say herself:
Today’s procedure was by far the worst one I have experienced, I had the EC (epidural catheter); this is where a tube is inserted into the spinal column. I also had the lumbar at T-6; this is when he inserts the needle into the spinal cord.
Dr. Ashish put me on the operating table on my left side with my knees at my chest and my back facing him. He wiped the area that he was going to be injecting. The swabs are very cold and my back is hyper sensitive especially at the site of the injury, Dr. Ashish is aware of how low my sensitivity goes. After the area is completely wiped down, he starts the procedure.
Dr. Ashish numbs the area before inserting the epidural and the needle. Although I am numb from the spinal cord injury, he still numbs the area in case there is a slight chance I may feel something, that could be very painful! I do feel a little pressure from that. As he puts the tube into the spinal column, I do feel it hit the bone sometimes, it is a strange feeling and I do not feel it often. It took Dr. Ashish a while to get the tube into position. I was getting very hot, and I was not breathing as I should have been. I get very nervous during this process as I have to lay very still, and with two other people holding me in position and one sister to hold my hand (as you can imagine, I am not as tough as I should be). Before he started the process of inserting the needle into the T6 section of my spine, I asked if I could breathe, Dr. Ashish laughed, I should have been breathing the whole time but I was too nervous. He was constantly asking if I could feel anything, after many times of him asking and me telling him no, it finally hit me! The pain was unbelievable. I instantly started crying begging him to stop, he told me no, that is what he wanted, he wanted me to feel something because he knows that he has hit the right spot and the stem cells are working! The pain was a burning/shocking feeling only on the inside of my body and down my left side, and all the way down my leg; it was the first time for this kind of burning, and that I have ever felt my leg the same as my upper body. However, I thought I was having a heart attack. Dr. Ashish asked if I were ok, I told him “NO!” I honestly felt like I was not ok. I am not sure as to how long the pain lasted, it seemed like forever but as soon as the burning went away, the assistants rolled me onto my back and I was fine. Dr. Ashish was filling out a chart, and heard me laughing, he asked if I were crying or laughing he could not believe that one minute I was crying then the next laughing!
I told him that I wanted that procedure again, he asked me “why, during the procedure you tell me no no no stop! Now you want it again?” I told him “NO PAIN NO GAIN!”
Now up to my room to lay still until tomorrow morning!
The intensity of the procedure, along with the anxiety before the procedure is extremely exhausting. When I arrived in my room, I only wanted to be left alone. I did however fill Sonia in on the events. Only, I do believe my exact words were; “This one %*#&ing hurt more than anything I’ve EVER gone through in my life, I almost let out a Mother %*#&er when he hit the spot! “
For the next three days I will be laid up in bed getting stem cell injections through the port in my spine. The injections are not painful, I will only have to lay still for two hours after each injection.
So there you have it. Here’s just a little more about the procedure from when Dr. Ashish came into check on Kasie. The first part of the procedure was the Lumbar puncture/procedure at level T6, which is above her level of injury. He goes in through the spinal column and then directly into the spinal cord to insert the stem cells there. After that part of the procedure was complete he then did the Epidural Catheter where he went into the spinal column at T12, below the level of injury and insert a catheter up up the level of her Thoracic spine to about C5 in fact. The remaining tube which is strapped to her back and then run up over her shoulder with a port is secured to her back with adhesive tape and padding. When Dr. Ashish came into check on Kasie this evening and give her the evening stem cell dosage through the port, she was in much less pain and discomfort than when she had first come back to the room. We all talked about the sensations – burning down her side all the way into her leg, pain at her injury site and below - she had felt while undergoing the actual procedures. He explained that the sensations she was feeling at the time of the procedure, at and below the level of injury, were the autonomic (ANS) nervous system – a very good thing, because it is really the first to re-develop. The ANS is a control system that allows the body to maintain homeostasis. It is the unconscious control or sensations we feel and don’t normally have to think about – things like heart rate, breathing, perspiration, pupil dilation, etc. Next comes the sensory system, the sense of touch and pain and body position, all of which case is acutely aware of during a procedure and afterwards while we are trying to position her into a comfortable position that she will need to lie in for a few hours without moving. And once these two systems begin and continue to regenerate themselves at and below Kasie’s level of injury (T8, T9, T10) the expectation is that her motor skills will also come back as a result of the stem cell treatments and intense physical therapies. While Dr. Ashish was administering Kasie’s stem cell injection through her port this evening she did again have some discomfort at and around the level of injury, another good sign according to Dr. Ashish. So it’s another two hours of not being able to move, this time she’s on her left side, with the foot of the bed elevated.
DAY 17: THURSDAY, November 6, 2008
A rough night for Kasie, she was quite uncomfortable and got little sleep. When she finally had drifted off early this morning, there was a racket going on in the room above us, apparently the canteen had received a delivery of propane tanks for cooking, and were dragging them across the floor.
Then after a fiasco with the Sisters this morning, no one was allowed to come a knocking for the rest of the day, except of course Dr. Ashish, Mr. David and the food, but no ward boys asking to clean the room, no Sisters wanting to check her BP, etc…she had had enough of all of them for the time being and just needed her rest after yesterday's procedure.
Dr. Ashish came in about 1130am for her portal stem cell injection, and this time Kasie was to lie on her right side for 2 hours without moving. Again, a slight sensation of discomfort once the injection reach her level of injury, but it dissipated fairly quickly.
This evening about 8:30pm Dr. Ashish returned to give her evening portal injection. It took awhile to get Kasie comfortable, well barely comfortable I guess you could say, because this time she is to lie on stomach for the two hours. So lots of pillows, changing the position of her hips and legs, etc, until we could find a position she would be fairly comfortable in for 2 hours. Again all good signs, because she is aware of her body positioning in her legs and the sensation of discomfort and pain.
DAY 16: FRIDAY, November 7, 2008
This morning Kasie had another portal injection, but this time Dr. Ashish gave her a double dose of stems cells so she’d be able to leave the hospital earlier in the day rather than having to wait for an evening injection. This time she gets to sit up for 2 hours.
At about 2pm, the Sisters came in and removed her IV and then her epidural catheter from her spine.
It was then time to head back to NuTech. Amanda, who had also been over there for a 3 day procedure, and Kasie shared a taxi back. Michele (Amanda’s sister) and I opted to walk back because there was no room for all of us, all the girls stuff and their wheelchairs in the car.
Once back at NuTech, ah –a refreshing hot shower for our girl. And then a quiet evening in.
DAY 17: SATURDAY, November 8, 2008
Kasie only had morning PT since it was Saturday. And after 3 days of very limited movement because of the bed restriction because of the catheter procedures it was a fairly strenuous workout for Kasie, but she did great. She showed Shivani that her toes contracted a little bit more when she would tickle the bottom of her foot It doesn’t happen every time she tickles her foot though, but it is could be an indication that . Perhaps a result of the procedure adding to the repairs of the autonomic system. Time will tell.
After PT we headed out and about for the day. It turned out to be an extremely heavy pollution day here in Delhi. Perhaps the worst we’ve experienced actually. There was very heavy smoke in the air as a result of heavy burning of everything from trash, to heating (because it’s cooling off here), to sugar cane…and of course all the cars...it was rather intense. The sensation of watery eyes; itchy, burning throats and nasal membranes; and just that plain uncomfortable feeling that overcomes you with too much smoke inhalation and dirt and dust was abundant today, and there was no escaping it, even indoors you still get an overwhelming sense of it. Well since we were out in it anyway, we visited a market area and sat and people watched for awhile. We then stopped by Hauz Kaus after checking out the little village and gallery shops there with some friends who hadn’t seen it before. The “water tank” is so polluted and green now (think green like Kermit the frog). Apparently since the last time we were here the “park” and “tank” are undergoing some “biological restoration”, according to the sign…but I’m not sure exactly what it is there trying to achieve in there, except perhaps some sludge..
Anyway, afterwards we all had dinner out at Park Baluchi, an Indian restaurant in Deer Park. A “fine” dining experience in Delhi. The food, if you like curry and Indian spices is actually quite good, but perhaps a little overpriced by the Indian standards we have gotten used to. I still personally think that some of the little “street” vendor food “establishments” are a better bang for your rupee and much more tasty for somethings…but you never know with them; and with this place we at least know it is a “safe” place to eat because we, and so many others from NuTech eat there without any problems…so there’s something to be said about that for sure. After dinner the 3 of them took a ‘taxi’ home because with Kasie’s wheelchair in the front passenger seat, and the 3 of them in the back seat it’s a tight fit for sure. But since it’s actually not that far I had a nice walk back through the park, and only had to climb one gate and wall that unbelievably had been locked. Strange, but it is India.
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