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AA Aplastic anemia

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Old Sun Nov 27, 2016, 08:05 PM
Jacksontran Jacksontran is offline
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Vlogged My entire bone marrow transplant journey!

Hey Everyone. I am a long time creeper of this forum, when I was diagnosed over 3 years ago, & in many ways you have all helped me get here.
Thank you.
I was so nervous, and didn't know what to expect.
I am now 100 days post Transplant for my Aplastic Anemia.
Writing about it, just could not do the experience justice.

We vlogged it!! In hopes to share with anyone going through something similar. In hopes that our caregivers can feel our appreciation.
Please check it out, it was very hard sharing, but we have high hopes <3
https://youtu.be/N5cyLHf8yE8

Good LUCK. And we are here if you have ANY questions...The journey for us is going strong, hard and strong.
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  #2  
Old Mon Nov 28, 2016, 08:47 AM
Neil Cuadra Neil Cuadra is online now
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Jackson,

This is a first here, having video documentation of a transplant experience.

It's scary to see and hear about your almost-zero blood counts just before transplant, even though that's how the process works, and seeing that your counts were still near zero a week later, but it's uplifting that you sounded so positive at all times. I hope you are doing great at Day+100.

Was it hard to get permission to film like this at the Princess Margaret Cancer Centre?
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Old Mon Nov 28, 2016, 09:30 AM
Jacksontran Jacksontran is offline
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Hi there!

Hi Neil!

Thank you for watching! My girlfriend did most of the work. It was difficult at times as there were no gound rules per say. We asked permission from everyone we filmed and did not film in public areas. At many times they were hesitant, understandably so, but when we explained that it was for the greater good they empathized with us and let us carry on!

Everyone was extremely kind throughout!

Are you an AA patient as well??
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Old Mon Nov 28, 2016, 02:35 PM
Neil Cuadra Neil Cuadra is online now
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Jackson,

My wife was diagnosed with aplastic anemia, treated for it with ATG, re-diagnosed 2 years later with MDS, and had a matched-unrelated-donor bone marrow transplant in California. She's now many years past transplant and doing great.

When patients and their families have to make a decision about whether to undergo a transplant to try to cure the disease, hearing and seeing what it was like for someone else can be really helpful. They have to keep in mind, of course, that every experience is different and outcomes can be better or worse.

There's also a lot of variation in hospital transplant protocols from one institution to another. It's risky no matter what, but the good news is that each year the transplant prep and followup procedures have made it safer for patients than in the past.

I think there's more to transplant success than the medical side, and that a patient's optimism and determination to get better play a big role as well. It helps them ride the inevitable ups and downs. How wonderful that your girlfriend has that spirit and energy to help you get through this.
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