Many of you have offered your good wishes for Vinay’s health– some of you have even taken the next step and become part of the database. Others– especially when they read these posts I keep beating you about the head (and hopefully heart) with– are reminded of their intention to get registered; they think, oh, I’ll make it to the next drive and do it then.
A very special opportunity to get swabbed is available to desis in what I still think of as the brownest city of them all– even if it’s a big apple and not a mango. This Sunday, in NYC, from 4-8 pm, show up at Pianos and not only will you increase the possibility of saving someone’s life, you may get to meet the man who has inspired this incredible campaign to paint the national database sepia. Vinay might be there. 🙂 Please wish him a happy second wedding anniversary (July 3) for me, if you go.
If you can’t attend or you are not in the NYC area, please harass your loved ones. Get every South Asian person you know to consider becoming a committed donor; a list of the drives which are happening all over the country is here. While my constant posting about Vinay may insinuate otherwise, this is about all of us, not one of us. It’s scary to consider how close this can hit to home; I’ve lost two family members in three years to this disease. I may not know Vinay, but I don’t have to, to believe in what he and his team are going to do.
::
Which diseases can be treated by marrow transplant?
Over 70 diseases including the leukemia’s, aplastic anemia, severe combined immune deficiency, sickle cell anemia and radiation poisoning are treated by marrow transplant.
::
What exactly is a marrow / stem cell transplant?
Simply, it is the replacement of diseased blood stem cells from a health donor infused into a patient’s vein just like a blood transfusion. Within four to six weeks the transplanted marrow / stem cells begin to produce normal blood cells in the patient.
::
Who can become a marrow / stem cell donor?
You must be between 18 and 60 years old, have no history of hepatitis, heart disease, cancer or AIDS, and sign a consent form allowing the Registry to include your HLA tissue type in its confidential files for future matching. See NMDP link below for more details: Donor information (NMDP) and Donor Eligibility Guidelines.
::
How do I know if I am a match?
If you are found to be a possible match with a patient, the center in which you tested and/or the NMDP will contact you immediately and give you the option of proceeding to the next level/s of testing to insure final HLA compatibility with the patient.
::
Who pays for these tests?
Not you – the patient or his/her medical insurance does.
What happens if I am a match?
If the match is confirmed the transplant can be scheduled but only with your legal consent after in-depth counseling and a thorough physical examination.
::
Okay, now tell me how my marrow is collected?
Two procedures are available for stem cell collection.
1. Peripheral blood stem cell collection
(MOST current and common method)…..You are given small injections of Neupogen/Filgrastin for 3 to 5 days to force your marrow to overproduce marrow or stem cells which are then released into your circulating blood. The stem cells are collected by removing blood from a vein in your arm, passing it through a filter system, which collects the stem cells and returns the remaining blood to you…a 2 to 3 hour procedure.
2. Marrow harvest….
You are given light general anesthesia so that you feel nothing during the procedure. Only 2% to 3% of your marrow is withdrawn from the large crest of your hipbone through special sterile needles .. a 60 minute procedure. You may go home the same day.
::
Are there any risks or side effects?
1. Peripheral blood stem cell collection (PBSC) …..You might experience some flu- like symptoms, slight bone pain, or a feeling of heaviness during the injections. These discomforts usually disappear soon after the collection is completed. This will be discussed in detail with you.
2. Marrow harvest…..Other than the remote chance of a reaction to anesthesia or an infection the risks are minimal. This will be explained to you in detail. You may experience some soreness in the lower back.
::
If you were in Vinay’s shoes, you would want people to move beyond their fear and inertia. You would hope that they’d help, if they could. If this were your girlfriend, your boyfriend, your little brother or sister, your Dad…you’d be hoping and praying for someone to be a match. Well, you could be the match. And everyone who needs you IS someone’s sibling, parent, friend, beloved. This is the greatest expression of “community” I can think of– lives are at stake and we rally around those who need us, to support and heal them. If you are interested, please get to a drive in your area…while our enthusiasm and passion are infinite, our time is not.
Help?
Don’t forget to take two people’s (friends or family, who don’t live with you) contact info. With that information, it’s really a quick process.
Thanks for hosting the meetup last Sunday, Anna. It was interesting to see the people from the Sepia Munity Community in DC.
Also MERA PYAR is hosting EVENTS in cities around the USA July 12th…
NYC DC ATL SF Silicon Valley Houston
Click here for details.. It’s a Bone Marrow/Mixer.. FREE!
Once again–many thanks for the post A N N A! You’re absolutely right: this isn’t at all about one of us. If everyone closes their eyes for one second and just imagines that this could be THEM, it might move people to act. Vinay is no different than you or me. I can’t scratch that from my mind, my heart.
Please, folks. Spread the word. It is the only thing that will save Vinay’s life.
If it was your own mother, brother, sister or friend–you would.
Thanks for the info Anna. One question – I’m Canadian, so don’t have a SSN. Do I need one to participate? Thanks!
no u do not need an SSN, i am on h4 n do not have one. did not give any other thing like passport number/driving license either. just give good contact information. that which is unlikely to change. of urs and ur two contacts ( the two contacts information is taken for the same reason )
This is somewhat related, but somewhat tangential as well. But in the movie ‘Sicko’ there’s a story where a similar bone marrow match is being sought out, and one is actually found, but the hospital refuses to do the service based on the process being ‘experimental’ The hospital board did not approve it, could a similar situation occur here? Maybe those in the medical profession could shed some light?
I realize that India itself does not currently have a registry (making this conclusion based on clarifications on earlier posts) but what about getting samples from India. I remember reading a comment or post that indicated that Vinay’s family in India is being swabbed and tested, but are there more widespread efforts in India? I think (and I might be going out on a limb here 🙂 that India has tons of Indians, although there they just call them people.
Of course, I have no idea if sample compatibility testing facilities are available or affordable enough in India for this to be realistic.
The process of a bone marrow transplant is a standardized medical procedure, and no hospital housing patients in need of a transplant would EVER refuse to do one. It’s not experimental at all; it is a highly specialized, well-thought out, and carefully practiced endeavor to save patient’s lives. So basically no chance of hospital refusing to perform it.
I just stopped by a drive today towards the end of the day. The “good” news is that they got such a huge response that they ran out of kits, and are planning to schedule another drive in the area. The bad news is that all these drives seem to have netted only around 10,000 to 11,000 samples. With a 1 in 20,000 probability of success, that is less than 1 match in expectation (and that discounts the 60-70% back-out rate). Surely, the 1-million+ Indian American community can do better than this?
hmf: if i remember the movie correctly, this guy had metastatic renal cell carcinoma..(white wife/black hubby, right?–i walked outta the movie being so disgruntled with the healthcare system…not the way to celebrate the end of residency..)
to be quite frank, (being the cancer doctor that i am), BMT therapy for metastatic renal cell is QUITE experimental (we don’t do it at our institution).. metastatic (spread throughout body) renal cell isn’t cureable–BMT is not common therapy..
on the other hand, AML and most blood disorders are CUREABLE and are not experimental…and WOULD NEVER BE REFUSED!!!!
so it was a different type of cancer completely.. hope this helped… (back to the stacks to study).
p.s. bmt–bone marrow transplant p.p.s. vinay is attending the drive in nyc SO go if you’re in town!
Not if you’re Newt Gingrich. I have always been very impressed that his parents could see so the future so clearly that they gave him the name of a slimy lizard.
Alright, sorry for that threadjack.
Well, what do you know? Barack Obama has joined the campaign for Vinay: http://www.sepiamutiny.com/sepia/archives/004551.html
Is this opportunism on his part? Is he doing this just to win back the brown voters after his Hillary (D-Punjab) fiasco?
FYI – there was a bone Marrow drive booth setup at TANA 2007 – DC Convention center over the July 4th Weekend [Fri-Sat] and it was a good success. Quite a few folks signed up, the booth was crowded everytime I walked past. I’d registered earlier and had sent in a few friends over to the booth on Sat.
Strongly hope this makes a difference.
“Who can become a marrow / stem cell donor?
You must be between 18 and 60 years old, have no history of hepatitis, heart disease, cancer or AIDS, and sign a consent form allowing the Registry to include your HLA tissue type in its confidential files for future matching. See NMDP link below for more details: Donor information (NMDP) and Donor Eligibility Guidelines.”
Oh, and don’t forget: you can’t be gay. Even if you’re a potential match, willing to donate. Sucks for Vinay and Sameer, doesn’t it?