CF Happens

Now that I am actually getting to the point of listing it is sinking in how sick I really am.  I am sleeping about 12-15 hours a day and even more if I take a nap.  You may say how is that possible or wonder why I am sleeping so much.  My body is very worn out just from working to breathe and then there is the coughing on top of that.  My body is sore from all the coughing I do.

People don’t see me inside my home on the daily doing breathing treatments, coughing, sleeping/resting, taking all my meds, working hard to breathe so people on the outside don’t understand how hard it is.  People see me having just done a breathing treatment in hopes that I won’t have a coughing attack in public and get all the stares as if I’m dying or have the plague.  It’s embarrassing and makes my anxiety raise.  The sicker I’ve gotten the worse my anxiety has gotten.  I worry about being in public alone and having a major coughing attack where I can’t catch my breath and then having a panic attack because I can’t breathe.  I worry about seeing stars from coughing so much while driving.   Needless to say I have become much more of a worrier the lower my lung function has gotten.

Having lung function as low as mine is scary in and of itself because it is so hard to breathe but throw in still trying to function on a day-to-day basis and do things is hard.  Add in knowing that it could and will most likely go lower over time is terrifying considering how I am right now.  I’m hoping that my body learns to adapt to the new low so I can do more things.  I have been avoiding going out of the house a lot because of all of the flu and other viruses out there plus it is a lot of work to get ready and go.  The decline in my lung function started because of a virus I caught around Christmas.  It was hard to adapt to such a low lung function when I was in the upper 30%’s.  It seemed like it was overnight.

There are still things that have to fall into place for me to say “ok” to being listed.  I will have to relocate to Kansas City after I’m listed so that I am closer to Barnes so I can get to the hospital in a timely manner whenever I get a call for lungs.  My family lives in KC so that’s not the hard part.  The hard part is that my husband will have to stay in TN to work, which he is still on the hunt for a job after retiring from the Air Force.  He won’t get FMLA for a year after starting a job which will allow him to keep his job while being with me in St. Louis after transplant without pay though.  I have to stay in St. Louis for at least 3 months after transplant.  So that is me relocating to KC before transplant for however long I have to wait for a call and then relocating to St. Louis for at least 3 months after transplant for follow-up care.  I will have to do pulmonary rehab (exercise) everyday after transplant, once I’m out of the hospital.  I will have to get frequent (a few while living in St. Louis then at 3 months and 6 months then yearly) bronchoscopes (going down into my lungs with a scope and taking samples of the lungs) to check for rejection.

This one may not seem that big but we have 2 dogs that we have to figure out where they will go during this time as well.  Then there is the factor of having a senior in high school who will graduate in May.  He will then be off to college in the fall.  It seems that the timing couldn’t be worse for a few reasons.  “It is what it is” as my mom would say.  I now understand why my mom would have a good day then sleep for a few days after.  A “good day” takes so much out of me that I have to rest from it afterwards.  I hate it.  I hate being a slave to my own body and not being able to override it.  I used to be able to push through but not anymore.  My body laughs at me.

Either you are more understanding or more confused.  If you are confused, welcome to my world.  I guess I’m more overwhelmed than anything.  I would be lying if I didn’t say I have questioned even getting a transplant with all that it entails.  I want to live long enough to see the kids get married and possibly see grand babies, if the kids decide to have kids that is. haha.  I want as many years as possible with my husband and the rest of my family.  I want to see my neices and nephews grow up and much more.

So that is my heart on my sleeve for ya.  Yes, I’m scared about this huge step in my life.  I’m sure there is something I left out of this post but it’s long enough already.

Until next time…