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Story #21 of 50 days, 50 Stories Campaign
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Donors are very precious to us, and as part of the DATRI family, we maintain relations with them. For the same, frequent telephone calls to them are part of my job.
Our donor Apurva had completed two years post-donation. She donated her stem cells to Ms. X, who suffered from aplastic anemia.
When I called Apurva for the follow-up call, and She was waiting with bated breath to meet her recipient. Usually, 1-year post-donation/transplant, we arrange the Donor-Recipient Meet (DRM), if both parties are agreeable and willing to meet. But, Ms.X was still suffering from post-transplant complications and hence the meeting had been deferred.
A year filled with COVID and its impact flew by and when I called Apurva to wish her on the historic day when she donated her blood stem cells. Her first reaction was “How is my recipient doing? Is he/she now better? can we meet”. The questions came rattling towards me like from a machine gun. The excitement in Apurva’s voice was so clear.
When I explained that I had called to wish her and also check regarding her health, she immediately replied “I will talk to you only when I know about my recipient’s wellbeing.” I was taken aback by the authority in her voice and also stunned to see the care and worry for her recipient. This for someone she had never met or even spoken with! I promised her I will call your recipient and will get back to you.
So, my next call was to Ms. X and she was not willing to meet the Apurva. I thought maybe she is still not well health-wise. So, I asked her treating doctor about the same, and he said I have already given consent that she is doing well.
The doctor said she was doing well, but the recipient was not willing to meet. It was difficult for me to understand. I tried once again to convince Ms. X but she replied “honestly, I’m very, very thankful towards my donor, but I don’t want to meet them. There is no specific reason. “I was confused, On one side, Apurva was very anxious to meet and on the other Ms. X was unwilling. How should I tell Apurva that Ms. X did not want to meet?
When in doubt or confused, the best solution is to ask for help. So, I discussed this with Sumati. After taking all the details from me, Sumati called Ms. X and after about 15 minutes of call, Ms. X told Sumati ” My community will not accept if they come to know that I had cancer and had a stem cell transplant. They will not let me and my family live here”
We were shocked to hear this, we thought Ms. X should be lauded for first fighting with a blood disorder and then undergoing a Bone Marrow Transplant. She and her family should be used as examples in the community rather than be stigmatized. Unfortunately, there are many Myths in India and patients have to suffer the consequences.
Understanding her situation, we promised Ms. X to not divulge her name on social or print media and to organize a very private meet. With this assurance, she immediately replied “YES,” I would love to meet my donor.”
Ms. X did not know her donor’s name, as it is our policy, we do not disclose donor & recipient details without their consent.
We planned this meet as a zoom call and in the 2nd quarter of 2021, this e-meet was conducted with a very limited invitee list. only Apurva & her family, Ms. X & her family, Sumati (on Ms. X’s request), the counsellor who had counseled Apurva to donate, the donation coordinator who had coordinated the actual collection process, & me.
When the two ladies met, they realized that were of the same age group. and they connected instantly. Ms. X & her family was filled with gratitude towards Apurva and her family for supporting Apurva’s donation. Ms. X told Apurva about the problem of acceptance in her community and became very emotional Apurva understood her feeling & consoled her. Apurva also shared her experience of donation. Now they are in touch with each other. It was a delightful experience, and I was blessed to be a part of this moment
As promised, we would not divulge Ms. X’s identity; I am unable to share her name here. When you read this, I hope you will support cancer survivors as they have fought for their lives and they should not face stigma – instead they and their families should be treated like heroes for their courage and tenacity!
About DATRI:
DATRI is a Not-for-Profit organization founded in 2009 with a mission to save lives of those suffering from life-threatening Fatal blood disorders like Blood Cancer, Thalassemia, Leukemia, Aplastic Anemia, Sickle Cell Anaemia, etc.
DATRI is registered with the Government of India as a Section 8 organization, and all monetary contributions towards DATRI are subject to 80G exemptions
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About the Author:
Sanika Deshmukh is a follow-up associate in DATRI Blood Stem Donor Registry, she is completed her MBA in Human Resources & Healthcare Management. She is very energetic and passionate about her work. She strives to bring positivity in the life in and around her.