I really need these lungs to get here soon…

I am still waiting on the list.  🙂  I feel as if I have been on it for years, but it has only been a week.  I feel so incredibly horrible, and I have been wondering if it was all in my head.  Since I have gotten off of the trial drug I was on, I just keep feeling all of the time as if I am not getting enough oxygen.  And like every little thing I am doing is SO incredibly difficult.

Well, Monday, I did go to an appointment in Iowa City.  My lung capacity went from 26% the last time, to 18-19% now.  THERE is why I am feeling so awful.  I am declining.  We expected that I would, but I am just really feeling the decline right now.  The other HUGE significant thing that I experienced was a 6 minute walk test.  All it is is just that…walking…for 6 minutes.  A year ago, I did the 6 minute walk test with 8 liters of oxygen (which is a lot) and did okay.  This time, I did the 6 minute walk test and had to turn up the oxygen to the highest of 15 liters, and I STILL didn’t stay saturated!  Three times during the walk, I had to stop and rest.  I was seeing white spots and felt like my body was going to burst into flames.  Not to mention the fact that regardless of the fact that the hospital staff knows I am sick, it is still a hard thing for me to be 28 and in such horrible condition.  Especially since I LOOK so normal.  Take my tubes off and I am a normal 28 year old woman.  It is hard sometimes.

Anyhow, that was very scary to hear how much I have declined, and so quickly.  I really need these lungs quickly.  Please keep praying for me!  I know God is always on time, but in times like this, it is really difficult to be patient.  I just want to live again!!!

Much love to everyone.  Just wanted to update.  xo

ON THE LIST!!!!

I am really excited right now b/c I am officially on the lung transplant list!!  This is a real blessing for me.  The funny thing is that when my husband asked me how I felt, rather than feeling scared or anxious or anything else, all that I could think of to feel was RELIEVED.  I am relieved b/c now I have done all that I can do to help myself.  The rest is in God’s hands.  I will get my new lungs when God is ready for me to have them.  And that’s it.  I have done everything I can do on my own.

So, in the past few weeks and especially now, I have been in serious preparation mode.  I have cleaned closets and organized things, and I have been making lists, etc.  I know we will be living away from home for a long time, and the kids will be without us.  So, I am concerned about making sure everything is perfect.  I know that I shouldn’t do that to myself, but I just can’t help it.  I am a busy little bee.  🙂

FORTUNATELY, we have had a lot of support in all of this.  My husband’s work has been absolutely AMAZING from the beginning.  That is almost the hugest blessing in all of this.  They are very supportive and understanding of our situation, and that is so awesome b/c the LAST thing I need to be worrying about right now is his job or benefits.  Not only does he love his job, but they really care and are taking care of him in this very critical time in our lives.  On top of that, Jay’s parents are willing to live here with the boys in our home while we are gone to provide stability for them.  This is critical, and it makes me so comfortable.  Those are the two most important things for me.  And everything else is falling right into place as well.  I am feeling pretty good right now.

So, now………I just wait!  I will have the phone and my pager to my hip all day every day waiting.  Please pray for us!  And please pray for the things that I listed in my last blog entry.  Those are all very important as well.

Blessings!  Much love to you all!!!