My Moments to Breathe

Tuesday, February 18, 2014

I was born to be a rockstar

Wow! It is 3 months to the day that I had my transplant. And it took all 3 months to finally feel semi human again! My shakes are still bad, still working with my diabetes, blood thinner, and insomnia...but the rest is turning out better than I could ask for.

To celebrate three months out, I got to go to a clinic appointment. It was the first time in YEARS that I wasn't nervous at all to go. I trusted that I was going to do some amazing things. My chest XRAY turned out great. As a matter of fact you can see it up there on the left, the one on the right was right before transplant. Big difference?...I'd say so. I still have a small spot of the left side of the picture from the infection that I am fighting off (with the help of good ol' meds) but it shrank a huge amount in the last 2 weeks, no worries there. Just keeping an eye on it. You can also see my port in the picture on the right.

My 6 minute walk improved and again I stayed at 100% the whole time, isn't that an amazing number to see?! I think so. But speaking of numbers...I blew my pft and it was a 97%


Let me type that again because I can't believe it either...


I am so teary eyed just looking at that number, its amazing. If I could hug my lungs and my donor family right now I for sure would. My breathing is out of control good, and thats still with that little spot on my lung. Amazing. Just amazing. I honestly don't know the last time I felt this good. Maybe grade school? I am, for now, what I wanted to be...a healthy girl in a semi-healthy girls body. Happy tears.

Now to all the little things we talked to the doctor about:

One of my levels for an anti-rejection medicine is way off....way too low. So he upped my prednisone by quite a bit for the next 2 weeks, and said my sugars will be a little crazy again. BOO. I was really hoping my sugars were going to go back to semi normal, although I am getting used to weird sugars and just eating and covering (or correcting) it still isn't fun. But anyways...the level....they are going to work on that. Double check it tomorrow to make sure it wasnt the test that got messed up a bit (I have a bronc in the morning. Prayers again please.) But this is something we can fix. 

I can now pick up Laila. So who is more excited, me or the little one?! I am pretty sure as excited as I am...Laila takes the cake. When the doctor gave me the ok today she gasped and ran over, "Lets practice!! Mom, stand up and pick me up!!"  And then when I did pick her up she said while giving me a huge hug, "Mom, I missed you!"  Pull on the heart strings for sure. I get my girl back all the way!!

Now for my challenge: I got the OK to get my GTube pulled in a few weeks until Dr. S talked to my PA and she said she didn't like that thought. SIGH. Then the discussion/argument (...a nice argument) started. (insert time laps of about 20 minutes for the discussion here) To which the results were what neither of us really wanted, but a good compromise. If, no I will re-phrase that, WHEN I gain 6 pounds she will give me the thumbs up and I can have it removed. And in the mean time I should be having a chocolate shake a day (not even kidding here.) CHALLENGE ACCEPTED!!

  It was a great way to celebrate 3 months out. I thank the Lord for this wonderful gift every day. I can now start living again!!


  1. Wow Cassie!!! You truly are a rockstar! Everyone in our CF community is a superhero and rockstar in my book :)

  2. YAY!!! LOVE this news. <3 SO BLESSED. xoxo