Response to TYT: Teen Denied Heart Transplant Over Bad Grades

While I love the Young Turks, I’m torn on this video.  Both Cenk & Ana seem to say they understand the transplant process but they oversimplify the decisions that go into listing & selecting candidates for transplant, whether they are adults, or in this case, children.

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Children, Rare Disease, & Transplant

My diseases robbed me of the ability to have children.  There was a 50/50 chance of passing along Tuberous Sclerosis Complex (TSC) to a child if I had chosen to have one at any point.   Later, I had a complication that would completely close the door on that possibility, ever.

I have no regrets in this regard, but sometimes being a single woman with one disease (lymphangioleiomyomatosis or LAM) that consists primarily of women who may already have had children or were having children when they were diagnosed is tough because it’s an experience I can’t relate to in the same way.

I can understand my parent’s fears of having a child with serious illness, but it’s not the same as if I was a parent myself.  I do my best with it, but it’s a challenge.  Especially when the hot button issue of having children comes up in my support communities.

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