My Moments to Breathe

Tuesday, April 2, 2013


I woke up and hated CF so much this morning. Plain and simple and there is no way around it. I wanted to curl up back in bed and not think about it. But then that thought beat everything out, "you gotta do what you gotta do when you gotta do it."

The itinerary for the day:

7:00 Register
7:15 Labs
8:00 Pulmonary Function Test
9:00 6-Minute Walk
9:30 Dental Consult
10:00 Social Work Consult
11:30 Lunch Break
1:30 Health Pysch to fill out paperwork for the next appointment

I just want to say that I wasn't able to eat since 7:15 last night because I had to fast for my labs...and for those of you who know me know I LOVE TO EAT! But thats all I will say about that!

So yes, the day started with Labs and blood being drawn. I am def not scared of a needle so this was no big deal to me. I was fine. I did have to get poked 3 times because they needed to test different things and when all was said and done they took 23 vials of blood. My arm started to go a little numb. It was a ton of blood and it was a little odd to see so many vials filled with your dark red blood. But like I said, poke away because those things I do not fear.

My PFTs went well. They started off at 24% and went up after they gave me my medicine. Now I have started to hate PFTS because now that I don't get as much oxygen and still want to get a good number I have started to get very light headed and feel like I could black out. But again, I fear not the PFTS so bring them on.

The 6 minute walk started out really well but I did dip down to 87% for my o2 which now means I qualify for at home oxygen. This is very, for lack of better words, bittersweet for me. Yes, I will love having it around for when I work my lungs off and need help catching my breathe. Yes, I will love being able to walk farther easier. Yes, I will love knowing it is there for those times I feel like I am suffocating. But, that also means that I AM suffocating enough to need it. That my lungs can't work as well on there own...basically saying that I am getting sicker. A thing I needed to BREATHE about today.

Not too much to say about the dentist. I got a huge thumbs up and he said I have very good teeth. But did say that once transplant is done he would recommend getting my wisdom teeth pulled because they are hard to clean and I don't need them. But come on, not too many people still have those suckers. Its like a badge of honor!

Now for the social work. What can I say about this. Its the time they tell you how you will be on expensive meds for life. And how, as my loved ones affectionately call me, "FAT CASSIE" could return for awhile post transplant. I will be diabetic. I could hallucinate. Jeremy has a huge job ahead of him. Laila may not want to see me in the hospital. You could die. Do you have a support team. Why do I want a transplant. The questions could go on. And SIGH luckily "Hospital Cassie" showed up and I didn't shed a tear hearing all the craziness. I saved those for later. I did sign up to be part of a research study for after so I was excited to be able to be part of that. I can help others out. My SW did say that she would recommend me to the team for a transplant!!! 

The health pysch paperwork was what you think it was. 165 questions about what I thought of myself and to see how I am handling life and my illness. We will see on Thursday what they think of that.

Day 1 over and I am just breathing.

Best part of the day: hearing that I my SW would recommend me.
Worst part of the day: Hearing all the scary "you could die" things.

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