Guest Post: Continuing Life

Today’s guest post is brought to us by Bo Butler. His Ashley had her double-lung transplant in 2007. They go to Pittsburgh for her care and she is doing great! I trust that you’ll find this as thought-provoking as I did.

There’s something I haven’t talked much about on my blog, so I’m grateful to Fatboy for the chance to guest-post-it-up. It’s something very important to both myself and to Ashley. Something, in a larger way, becoming increasingly important to a CF community that, for the first time in human history, has the medicine and the technology to stay alive longer. Long enough to want and to deserve more from life than simply breathing.

What is the goal of continuing life?

Continuing life.

Since she was very, very young, Ashley has asked little else from life than that she be able to have a child. Initially the problem was that no one thought she’d live past ten. Once she passed that they thought she wouldn’t live past twelve. And so it went. Until she got old enough that her body – hampered by lowered lung-function though it was – would be able to conceive and even carry a child to term.

And so of course worried doctoral hearts palpitated with warning. Blood pressures went up beneath blindingly crisp white smocks. Social workers were brought in. Discussions had. Fingers wagged.

Ashley’s a smart girl, though. Smart as she is tough. She knew that having a baby would do little good if the baby didn’t have decent parents around. She knew that, try as she and the docs may, she may not always be around. She knew she needed someone who would be.

She waited. Some of her CF friends had babies. Most of them didn’t stay around too long after that.

Then Ashley had a double-lung transplant. She is alive and doing pretty much as well as possible in every way.

I knew before we started dating everything I’ve just told you. I knew that being with her – if we stayed together – would mean attempting to have kids. I know also that it means I may have to raise our kid or kids on my own.

Am I ready for that? Well…is there a real answer to that question? I think I’m ready, yes. I’ve put a considerable amount of thought into it, visualizing as well as I can and planning how I would make sure that our child or children, under the unhappy circumstance of losing their mum, be raised knowing her. Knowing what she believes and what she believes in. What she values and what she stands for. How amazingly lovely and funny she is.

I think I’m ready.

And I know she is.

And, surprisingly, her transplant doctors are on-board. The last visit to Pittsburgh involved a lab test that is to determine the degree to which she’s effectively immune-suppressed. The reason for this test is so at the next visit, in July, we’ll know if they can start weaning her from Cellcept, which is dangerous to a fetus in a horrifying we’re-not-entirely-clear-what-may-happen kind of way. The options are to just move her to Prograf or to combine Prograf with another med, of which there are also two options.

So here we are. Ready to risk more-or-less everything so that a little while down the road Ashley can continue her fight for life in a whole new way. Here’s hoping…