A Good Day Overall

I've been having some low Sats lately and some pain in my side so Dr. Hornick ordered a chest x-ray today.  He's pretty sure it's just a muscular thing, but he wanted to double check.  Thankfully, x-rays aren't painful, so I'm good with that.  I'm not sure when I'll get the results from that, but again, if I don't hear anything I know it's okay.

The last few days I've had a hard time breathing when I get up to do anything and had really bad headaches from the low oxygen levels.  Hornick said that I may need to start using more oxygen at times when I didn't used to need it.  That's pretty frustrating to me, but I'm always hopeful that things will get better.  He also said that he's always been surprised with how high my Sats have been given how low my PFTs are.  I think that's kinda cool.  

I also did PFTs today.  They were 31%.  The number we look at, called FEV1, is the amount of air that can be blown out in the first second after deep breath.  Mine is something like .84 liters, which is 31% of what is predicted for my height, weight, etc.  That's not too bad considering how bad I was when I came in, but they're not even close to where I want them.  But really, I want to be back at 85% so...

I kicked some major butt at exercise today.  My Sats stayed high the whole time (on 2 liters of oxygen, of course) and my work load was higher than it's been in awhile.  Amanda gave me a challenge and I couldn't resist.  Turns out I did pretty well!

So, something that's running through my mind...

I'm rethinking the transplant.  Two years ago I made the decision to not get one, but for about the last year I've been continually questioning that decision.  I think it was the right decision at the time for multiple reasons, but now I think I need to look at it all again.  I'm sure I'll be talking about this more in future blogs, but for now I just want to ask that you pray for me and for Jake while I make this decision.  Doing this would mean major life changes, the least of which would be moving for probably 6 months or more.

Thank you so much for allowing me to talk about all this.  I really think this has been good for me and allowed me to open up about a lot of things I probably wouldn't talk about in person unless specifically asked.  I'm very open about my disease but I find it very hard to open up about how it affects me emotionally and so this gives me a good outlet for that.  I also very much appreciate your prayers.  It is only because of Jesus that I am here.  He's the only thing that gives me hope and a purpose for my life in the midst of so much disease and pain.  I am continually grateful that there are people who lift me up to Him in prayer and though I will never understand it, God chooses to move when His people pray, so...thank you for all you do for me.