What Next?

 

Hope & Faith!

Here’s what my prayer list looks like now:

• First of all, that my lung capacity stays where it is and doesn’t continue dropping for as long as possible.  (My lung capacity is currently at like 59% of expected, down from like 70% when I started with the first allergist in late 2007, to me that seems like a scary drop.)  Since 70% of LAM patients experience a lung collapse, I’m also praying that I remain in the 30% who DON’T experience one.
• That I can limp along with these faulty lungs of mine for quite some time… years and years!
• That the trials are productive and some treatment options are found.
• That the trials are successful and a cure is found!
• That they continue to learn more about lung transplants and improve the rejection rate, so somewhere down the line if/when I need one – it won’t be QUITE such the scary procedure it seems to be now (to me at least!).

It’s still overwhelming.  I’m not constantly crying anymore, so I’ll take that as an improvement – although silly little things can still start me going sometimes. I’ve got a disability placard for my car because my oxygen level drops so quickly when I walk.  Since to look at me I “look” healthy, I now have some great pamphlets from the LAM Foundation to hand out if needed. 

For now, I am still adjusting to the chronic lung illness -- in fact, we all are. It effects pretty much every aspect of my life: sleeping with O2 means traveling with O2, just walking without O2 can be problematic so I need to be careful and take my time, a lot of stairs are pretty much impossible without O2 (which makes getting in and out of concert or sport arenas fun - NOT). It can be overwhelming to have to worry about all this, but thankfully I have an amazing husband who is always there for me when I need him. We also have a wonderful extended family and circle of friends who are always willing to step in when needed.

We thank everyone for their thoughts and prayers!  We will keep you updated as we find out more information.

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