Pl read

1. Why o Why?

If you are visiting these writings for the first time, or have not read the entry "Why o Why",

may I suggest you read that first and then read the rest in numerical order?

Tuesday, 21 March 2017

5.2 Reflections on Stem Cell Donor Registration Drive, March 14-18, 2017, at IIT Bombay

It has been almost three days since the 2017 edition of the IITB-MDRI Stem Cell donor registration drive came to an end, after six days of frenetic activity. The first three days saw many of my students and their friends and sympathizers fan out into the Hostels and spread the need for coming to the meeting with the Doctors and subsequently the actual event when one registers to become a stem cell  donor.

The session with the students at their hostels went something like this.

We would go to a hostel during their dinner period - when at each dinner table we will find several students sitting with their friends and eating.

“Can I talk to you guys about an important matter? It will take only a few minutes.”

In years past, students would respond by studying you and then vaguely look at you with most mumbling a “yes”.

This year the dominant reaction was a half-hearted nod (while they continued to look at their cellphones waiting for that all important message) which could be a “ yes” or a “no” but I almost always took it as a “yes” and would pull a chair and sit down.
  • Have you heard of Stem Cell Transplant?
  • Do you know that it is the only way some of the blood diseases can be treated ?       
  • Do you know that according to some predictions, everyone of us - in about 10 years - will know someone, either a friend or a relative, who has been diagnosed with leukaemia?                                  
  • Do you know that in the U.S someone needing a transplant has the luxury of choosing from more than a dozen possible donors?
And there were other possibilities of keeping them engaged through questions than this.
Our intention was to make them realize that this problem was not a lifestyle disease but something one may be afflicted by just because we all have to breathe or eat.

More often than not, we felt we were successful in making our points and that they will, even if they don’t show up at the “meet-the-doctor” event, come to the registration desk on the following few days and sign up.

Sometimes we faced two remarkably hostile types of people. The first was what I would call as the purely uninformed or don't want to be informed, “head-in-the-sand” type of non-believers. For them instant gratification in life was sufficient, the future is for someone else to worry about.

The second was the “I know everything, I am a researcher in this area and everything you know and do is wrong” kind.

We found both to be worth avoiding -- They had a snow balling effect on others. In the first case because people around them did not want to break away from this naysayer's camp and in the second case because the person claims to be knowledgeable. Given the short time we had given ourselves to collect as many supporters for our cause as possible we did not want to entertain such distractions, and so, moved on to the next table, trying to remove that bad taste in our mouths.
This year’s drive was quite a bit disappointing.  Three years ago, we had signed up more than 200+ potential donors. This doubled in each of the two subsequent years. So we were all hoping for another doubling. But, we were able to enthuse only 250 or so donors to sign up. We are  still analyzing why such a low turnout was witnessed this time around.    My first reaction was utter disappointment that lead to the following letter  being  sent to the editors of IITB's INSIGHT magazine for students:

Dear ​F​riends:
Why this apathy from the best young minds of India?
How many times have you complained about "the system" not taking care of those "in need"?
But, when given a chance to doing something about it,  how many times have you responded?
Think about it.
​​​T​oday was the final day for ​blood sample collection/Stem cell Donor Registration​.
It was the culmination of 6 days of campaigning -- all to mobilize support for and participation in  the bone marrow registry -- so that you and your near and dear ones will find the all important matching stem cell donor, should the unfortunate need arise due to blood cancer, etc.
All of us involved in this drive have been quite disappointed by the very low turn-out from the students of IITB.
What would it take to awaken you?
-- Krithi Ramamritham (CSE) and the MDRI-IITB team
No response came from those I wrote to.
Nevertheless, consoling myself that 250 is not a shabby number, I sent the following sincere thank you note to the students and faculty:

Dear friends:
We would like to thank the nearly 250 students/staff/faculty who took the time to register last weekend in the IITB-MDRI stem cell donor registration drive.
Hope some day your generosity will help save the life of someone who needs stem cell transplant.
Our thanks to Prof Soumyo Mukerjee for motivating the students to participate in the drive.
Thanks to the many volunteers whose help made the drive possible.
Best wishes

IITB-MDRI team       

Saturday, 18 March 2017

5.1. The Challenge of finding Donors for Stem Cell Transplant

The only alternative available for people suffering from some blood disorders is Stem Cell Transplant. In simple terms, this involves preparing the patient’s body to make new blood cells from the Stem Cells of a donor who matches the patient. Clearly, this will first require the destruction of all the bad blood cells in the patient’s body - which is achieved using Chemotherapy. Chemotherapy has a good chance of killing the cancer cells but also kills the stem cells in the bone marrow.

In the past, stem cells were harvested from the bone marrow of a matching donor. Nowadays donors are given a booster shot which increases the number of stem cells in their veins and the stem cells are extracted from the peripheral blood. The process is similar to blood donation with the difference being that all the other components of the blood are returned to the donor’s body and the stem cells are harvested.

It is a harmless procedure, with little, if any, discomfort to the donor but life-saving for the patient benefiting from the donation. But, as always, in rare situations the discomfort lasts for a few days. Given the odds of this, compared to the massive import of saving a patient's life, to me, the choice, if called upon to become a donor, should be obvious. So, I find it unfortunate that on many occasions, when we have done bone marrow donor registration drives, we have encountered young people shying away because of the above issue.

Nevertheless, it is somewhat better to declare upfront that you do not want to register, rather than registering in response to  someone's harrangue, and later, when the patient is anxiously awaiting this donor's stem cells, backing out.

To avoid such  occurrences, an information session is conducted by doctors to bring awareness about stem cell donations. Following this, potential donors register themselves, providing information like ethnicity, address, phone number, medical history along with  a 5cc blood sample (or a swab). The sample is tested for blood diseases and HLA typing is done. 
On the other side, if a patient comes along, anxiously looking for a matching donor, the registry is searched. If there is a match the matching stem cell donor is called for further tests.
The probability for a match from a donor not related to the recipient is disappointingly small. The matching also depends on the ethnicity, for example Keralites would have a higher probability to match with Keralites. A larger database would clearly improve the chances of a match. Even if there is a perfect match, a receiver’s immune system might reject the donation from a particular donor -- a larger database of registered donors increases the number of potential donors and the reduces the odds of rejection.
In the US and other western countries,  there is  awareness about the need for donations of all kinds, and there are 10-15 matches for an average blood cancer patient, with a database with ten's of millions of donors. Even if we add the entries in all the stem cell donor registration organizations in India, we will not find more than 200,000 entries.
Young donors  are important because once they register they would be in the database, and be potential donors, for more years. 
With leukaemia set to soon become as prevalent as diabetes and blood pressure, the Registries and the volunteers who passionately work for them, have their work cut out. 
May their efforts succeed!

Wednesday, 15 March 2017

4. Beware of the Internet: It will only increase your worries and little else

The World Wide Web is a wonderful resource for lots of things. I wonder how many times an average person searches the web for information each day.

My academic research has taken me deeply into the domain of the Web, especially in the context of data caching, search, access, replication, mobility, etc. But I must confess that when it comes to my experience with the web while I was searching for medical  information relevant to me, I felt like a blindfolded person lost in a jungle.

We have tons of text and pictures but little by way of support for users to know when the information was posted,
the shelf-life of the information,
the authors,
where a particular quote or "fact" came from, etc. etc.

To put the above in perspective, have you ever arrived at a location
published on the web claiming to serve a delicious meal only to find that
instead of a restaurant there is a laundromat there, or should the restaurant
exist,  the quality of the food or service rarely matches the raving reviews you have read, or the colourful pictures of the interior (of the restaurant or the food)
do not compare with reality.

What about the medical domain? In addition to the problems mentioned above with respect to accuracy, completeness, and time relatedness, there are the  thorny perils of interpreting aggregated information.
For example, when it comes to cancer treatment, how should one interpret "2 year survival probability of x"? Should one be happy that x is more than 0 or that with (100 - x) probability, I am unlikely to be around 2 years from now? Do the qualifications attached to the above statement apply to me, and if so, with what probability? The questions can be vexing even to the best of medical insurers, and worrisome even to the most stoic of patients.

The compounded effect of all this is that even a patient with a minor ailment will probably die from worrying rather than from the ailment.

With my brother-in-law taking charge of the logistics, my brother being a match and hence the donor, and SK  doing everything to keep my mind off my problems,  I decided to leave my care and treatment to these fine people
and my doctors, each of whom cared.

Wednesday, 8 March 2017

3. That’s the least of your problems!

It was an ordinary day in the beginning of March, 2006. But, the pronouncement made by the visiting  Neurologist at IIT Hospital was anything but ordinary

“What you have is a degenerative disease – will get worse as you age and we don’t know at what rate ”.

I tried to protest saying that the large amount of coffee I consume caused the symptoms. But the tests that were ordered discounted all other possibilities, clinically confirming the diagnosis.

Almost four years pass by.

I am in a new private hospital in Mumbai being rushed on a hospital gurney for some urgent tests. I looked at the young doctor who was accompanying me to the testing room and reminded him that it was time for my medicines for the ailment diagnosed four years earlier.

Why do you worry? That’s the least of your problems,” says the young doctor, perhaps thinking that those words would soothe me and make me feel less worried about what I had been living with for years.

Saturday, 4 March 2017

2. You are Still Alive?

It was the second week of Dec 2009, the last day of the conference that I was attending in Delhi. Just as I reached the topmost step of the entrance to the building where the conference was being held, I could not go any further and had to immediately sit down. Fortunately I had finished my talk the previous day and so I was lucky not to be a cause for any disruptions to the schedule of the conference.
SK insisted that we immediately rush to a doctor, which we did thanks to my ex-student MB who was working in an R & D Lab of a US company in Delhi. MB took me to the doctor that he goes to for his own needs. Thanks to him I had some quick blood tests done and was also seen by a couple of doctors. When asked if I had any recent problems, I mentioned about my Hs and they said that the resulting loss of blood may be the reason for the low HB level. They suggested immediate surgery which we were reluctant to accede to before consulting our regular doctor in Mumbai. Sensing our reluctance, they urged us to return to Mumbai immediately to take care of the problem; so we rushed back to the Hotel to pick up our luggage and then head for the airport.
I could not go up the steps at the hotels’s  entrance and so sat down right there. SK, as she always does, thought beyond the luggage. She went to the restaurant at the Hotel and had them prepare a batch of dahi bath (what more does a Tamilian need?) for the flight. Meanwhile MB rescheduled our return flight and even today I consider that return trip to Mumbai a foolish and dangerous mission considering what the Mumbai doctors had to say the next few days.
As soon as we returned to Mumbai we had contacted my doctor and had set up an early morning appointment with him. Looking at the numbers in the blood reports from Delhi he remarked, “I am surprised you are still alive and even withstood the flight from Delhi”. My HB level, as per the Delhi reports was 3.8 the normal expected value being above 10.

The first order of business was to take care of this, he said, and once that was done, perform the procedure required to take care of the Hs.

A few days after the surgery, my doctor dropped into my hospital room.

“The Pathology report of the samples that were collected during the surgery appear normal", said my Doctor, but the blood parameters show some abnormalities.

Those words heralded the beginning of the almost 3 year roller-coaster ride.

Thursday, 2 March 2017

1. Why o Why?

Why am I bothering to write this?           
Why would/should anyone bother to read this?

I have spent a lot of time pondering about these and other questions. After being on both sides of the fence I finally decided to start writing with the understanding (to myself) that I will continue to write if and only if there is interest from the readers. So this is my plan. Writing something like this requires a lot of discipline, both during the years about which one is writing and also when recalling the relevant years. Some sensitive information will have to be touched upon.

So I decided to write this in the form of a set of musings to myself, at least one “note” every few days, sometimes more, depending on interest and time availability. I would like to write about topics that will benefit others.

Why do I presume that my experience will help others ?

My fight with leukaemia (La for short) and the side-effects of its treatment lasted several years. The occurrence of  La is on the rise - if one goes simply by the number of questions that have come to us from friends and relatives of patients affected by it. Globally, WHO statistics also corroborate this. 

The same is true for the neurological disease (I prefer to call it ND for now) that I am supposed to have. This was diagnosed 11 years ago.

Neither of these is a so called “Lifestyle Disease”, one that can be cured by a change in lifestyle - say by following a disciplined daily regimen of healthy food, exercise, sleep, etc. Neither can be "cured", at best they can be observed and controlled and even that is not guaranteed.

But life has to go on. By sharing my experiences and narrating it in a way that comes to me naturally, my hope is that it will help others - affected by these and other similar diseases and ailments and cope with their problems and also ease the pain for their near and dear ones.

Yes, more than the uncertainties and pain felt by the patient, is the agony and helplessness of the friends and relatives close to them, people who regularly interact with them.

A celebration of life and a thanks-giving

In some sense this attempt is also a celebration of the many people whose good wishes and sincere help contributes to the recovery of someone whom they may never meet but are compelled to help by their humanity and selflessness.  May this tribe grow !

How can you help?

Please let me know what other topics you would like to hear about. I have a list of my current thinking in one of the notes.

With respect to the topics I have covered already, I would like to hear your views about the tone, style, usefulness, etc.... 

Corrections/comments very welcome and will be appreciated. 

These blog entries reflect the encouragement from many + the edits and changes suggested by a few wonderful friends including  Jayant, Malini, Nanditha and Sudarshan. My sincere thanks to them. Of course all the omissions and commissions are mine.
Please include those who are afflicted by the likes of La and ND in your prayers and hope these will be tamed soon.

--- use every opportunity that comes your way to donate blood and platelets.
--- sign up as a stem cell donor.

Thanks in advance!