Monday, March 18, 2013

Clearing misconceptions about bone marrow transplants


I had never intended this blog to be about myself or my personal life.  This was and is primarily a blog with spiritual content.   But since I my diagnosis of Leukemia last month, there has been a lot of misconceptions that require addressing, especially when it comes to locating donors for a possible bone marrow transplant.  I greatly appreciate the many who have told me of their intention to donate their bone marrow for my personal remission.  However, the process is not as simple as many may make it out to be.  Today’s blog, hopefully, will clarify certain misconceptions and prejudices that may be the cause of confusion and uncertainty.


First of all, the technology is so advanced now that no longer is it called a bone marrow transplant.  What the doctors use is the stem cells that are extracted from the blood of the donor.  There are no painful or agonizing experiences of one’s bone marrow actually being tapped and harvested.  The actual procedure is very much like going to donate blood at the blood bank, where one’s blood is taken, stem cells removed, and the rest is returned to the donor’s body in a short span of time.  As far as the donor is concerned, that is the only ‘inconvenience’ that one experiences as an actual donor.

Secondly, because the parameters (tissue typing) are so specific before any stem cell is received or given, the matching process is very detailed and specific.  This means that even though one may wish to donate one’s stem cells to a particular person in mind, it becomes almost impossible to be recipient-specific.  I fully appreciate the friends and parishioners who have told me that they want to give me their stem cells/bone marrow, but this is not how the process works.  It is far more complex than just the giving of one’s blood.  I have tried to explain to many friends that it doesn’t matter if they cannot donate their stem cells to me directly.  What matters is that they register themselves as potential donors and put their names on the worldwide register as interested donors.   When this happens, the list of potential donors becomes larger and larger, and it will shorten the waiting time for those who are waiting for willing donors whose basic parameters match theirs.  Currently, there are only about 55,000 local names that have registered as potential donors, which is a paltry number when our local population is 5.3 million.  This means that only 1% of Singapore’s population have signed up as potential, interested donors!  It is no wonder that they are still searching for a local match for me, and probably have to look overseas since only 1% of the local population has taken the effort to register themselves.

Thirdly, there is also the misconception that registering oneself as a potential donor is a painful and tedious process.  It is not.  One only needs to go the Blood Bank located at the Singapore General Hospital, and give a saliva swab from the cheek and fill out a few forms of personal details.  No blood is taken at this point.  This will become the basic information that is uploaded onto the local and worldwide register of potential donors.  Only when a potential match is discovered will one be contacted so that the next steps can be taken.  Apparently, it is at this point that some donors get ‘cold feet’, and decide to not go further in the donation process.  You can only imagine the disappointment that some recipients go through after hearing that a possible match has been discovered when this happens.

Fourthly, there is the misconception that donating one’s marrow will be a costly affair for the donor.  There is no cost at all to the donor, as the patient’s medical insurance will cover the medical expenses incurred.  The only cost will be one’s time and one’s stem cells.  It is important, however, to note that the registry will only accept registrants who are between the ages of 18 to 49. 

I do hope that this strange blog entry does not draw attention to my own predicament, but that it will help the many thousands who are waiting for a tissue type match, which will be able to give them a remission and much hope.  What is really needed is a mindset change towards donating.  Because this kind of donation is never recipient-specific, what is required is a generous heart that is open to the possibility of saving a life, no matter whose life it may be. 

When we are aware of our being active members of the Body of Christ, and that each one of us are that intrinsically connected through our spiritual bond, we become less concerned about whom we may be saving or helping, because whoever it is, it is a brother or sister in Christ.  This is at the heart of true Christian charity.  When we live this way, we will ever expand our horizons to love, to care for, and to ennoble one another in our shared journey that is called life. 

Further information about the Bone Marrow Donation Programme can be accessed here.

8 comments:

  1. Thank you for giving us direction in our desire to help, and the info and the link.

    It's now up to us to go SGH/NUH and get it done.

    Must make time to turn my cheek and get on to some 'Ahh...ums-giving'.

    God bless you and keep you, Fr Luke!

    joan

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  2. Dear Fr Luke,

    After reading your "strange blog entry", I recall (hopefully correctly) that you were one of the 51 potential donors who signed up for the BMDP (Bone Marrow Donor Programme) on 14 March 2010 during the Bloodmobile Drive at the Church of the Immaculate Heart of Mary.

    I pray earnestly that God will send a matching donor for you very soon. I also hope that many people (aged 18 to 49 years), inspired by your kind gesture and your blog, will have a "mindset change towards donating" and "a generous heart that is open to the possibility of saving a life, no matter whose life it may be" and register for the BMDP as soon as is possible.

    God loves you, Fr Luke!


    Maria (IHM)

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  3. God is using you, Fr Luke, to reach out world wide, helping to make people aware of this illness n how we are all one body in Christ, when we register n donate and it just doesn't matter whose life is saved.
    This was the thought that struck me as I read your entry. I had never thought of or seen it this way before.
    God Bless You, Father.

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  4. Dearest Fr Luke,

    Thank you for your blog which had cleared my misconception about bone marrow donation. I had been under the impression that the procedure will be painfully invasive and recipient targeted, guess my information was outdated.

    I had donated platelets when I was 18, eons ago, to someone who had leukemia at the tender age of 16. The process was to extract blood from my one arm, filtered through a machine to remove the platelets and return the remaining blood via the other arm. The process was painless (unless one include the initial insertion of needles) although I need to remain stationary for 3-5 hrs for the collection of a bagful of platelets.

    It's definately a relief and motivation to know now the stem cell donation is similarly easy.

    Yes Fr., we are all family - connected to each other in God's love and it matters only that God is using us to be His blessed instruments of healing grace. ;)

    God is with You, Fr.


    United in prayers,
    Laura

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  5. Father -

    I work at Duke's Adult Bone Marrow Transplant Program. I appreciate your post, as the misconceptions about bone marrow/stem cell transplant run rampant. I would also stress the importance of non-Caucasians registering for the National Bone Marrow Program as there is a tremendous shortage of donors for racial minorities. Interested persons can contact Be The Match at marrow.org for more information.

    Best wishes to you. May God be with you through your journey as a healing presence.

    In His love,

    Sue Roth

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  6. 'UBUNTU' in the Xhosa culture means: "I am because we are"
    ‘’An anthropologist proposed a game to the kids in an African tribe. He put a basket full of fruit near a tree and told the kids that who ever got there first won the sweet fruits. When he told them to run they all took each others hands and ran together, then sat together enjoying their treats. When he asked them why they had run like that as one could have had all the fruits for himself they said: ''UBUNTU, how can one of us be happy if all the other ones are sad?''
    'UBUNTU' in the Xhosa culture means: "I am because we are" (http://www.catalyzingchange.org)

    When I read the above in a link posted by a friend, I couldn’t help remembering what you said, that -
    ‘’...................each one of us ........intrinsically connected through our spiritual bond, we become less concerned about whom we may be saving or helping, because whoever it is, it is a brother or sister in Christ. This is at the heart of true Christian charity. When we live this way, we will ever expand our horizons to love, to care for, and to ennoble one another in our shared journey that is called life.’’

    How I agree with that! I would also like to think that this is not just ‘at the heart of Christian charity’ - but at the heart of being human........it is perhaps the ‘’ennobling characteristic’’ – the ‘indelible mark’ - that He puts in us that sets us apart from the other creatures/ Creation that He created. No wonder He believes we are worth dying for........but how far have we fallen below this dignity. It is in the rhythm of life, in their play and daily living of children that we see glimpses of what we are meant to be.

    God bless you, Fr
    tessa

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  7. Hi Father,

    My friends and I are drafting a social action plan regarding Bone Marrow Donation in singapore, is it alright with you if we take some information from this entry?

    Thank you : )

    God Bless, Louise

    p.s. you are such an inspiration :')

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    Replies
    1. Please do, Louise. We need to get this information to as many people as possible! Thank you for your efforts. God bless!

      Fr Luke

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