One Step At A Time

"ONE STEP AT A TIME"

You wanna show the world, but no one knows your name yet
Wonder when and where and how you're gonna make it
You know you can if you get the chance
In your face as the door keeps slamming
Now you're feeling more and more frustrated
And you're getting all kind of impatient waiting

We live and we learn to take
One step at a time
There's no need to rush
It's like learning to fly
Or falling in love
It's gonna happen when it's
Supposed to happen and we
Find the reasons why
One step at a time

I felt like these lyrics are representative of how I've been feeling lately.  On Tuesday of this week, I started a round of IV antibiotics.  I was put on a different antibiotic, as last time I did this I didn't feel as clear as I usually do after two weeks of therapy.  This has proved to be a very challenging few days since starting.  I normally get a little tired the first few days of these IV's.  The thought behind this fatigue is that the medication is killing the bacteria, which in turn release toxins in the body making you feel tired, worn down, etc. Well ... I either had an enormous amount of toxins released over the last few days, or my body just reacts completely different to this new antibiotic.  For the first couple of days, it was hard for me to get out of bed, let alone shower, walk the dogs, make food ... it was really, really tough.  In fact, I can't even remember a time where I have felt so utterly exhausted and weak.  Thankfully, that has since let up and I am feeling much better/stronger.  I've got about 10 more days of this stuff, and I am hoping things continue on the upswing and I will feel the relief that I am hoping for.

Next week will prove to be a challenging/interesting week for myself and my family.  I am going through the lung transplant evaluation/work up at Methodist here in Houston.  This will consist of about 4-5 days of testings and consults...and I even get to do a 24 hr urine collection!! Yup, can you tell I am excited ;)  All in all, this will be good to have in our rear view mirror, as it's better to get the testing done when I am healthy enough to go through it, and not sick in the hospital.  The "plan", if there is one, is that I will complete all the testing now so as I do not get in a situation where I need to be listed, but have to go through days of testing.  This way everything will be done, and when the time comes...it's much easier to be listed as "active".  Our first day will consist of the following:

• 2D Echocardiogram 
• CT of abdomen, pelvis and sinuses
• Barium Swallow
• Chest Xray
• Fluoroscope of Diaphragm
• Panorex
• Bone Mineral Density Test
• VQ Lung Scan
• Carotid Doppler
• Labs

The second day is the wonderful "collection of urine" day!! (But, I don't have to go to the hospital this day, which will be nice!).  The third day is mainly a consultation day with social workers and financial advisers. The fourth day is consultations with the pre-transplant coordinators, the pulmonologists and the surgeons.  Finally the fifth day is a possible heart catheterization, if they feel it to be necessary. After all the testing is done, the doctors will present my case to the "board" and it is at that time that they will make a case for me being a candidate for transplant.  I will later learn whether or not they feel I am a good candidate to be listed.

So, as you can tell, next week will be a busy week and one that comes with many emotions.  I never thought it would get to the point where I would be having the "transplant talk", or need oxygen ... or have to go through the transplant work up.  This however is just another step in life that we have to take, and maybe .... one day, I will know what it's like to take a wheeze-free, pain-free, looong, deep breath.  Maybe one day, I can start working on that bucket list of items I want to do now, but physically can't.  This all comes with it's own emotional struggle though, as I know my second chance at breathing normal, is at the cost of a precious life. I also know that transplant is not a fix-all solution. 

I will say, that I will be a happy girl after these two weeks are over!!  The past month has been tough for Bob and I.  I was in the ER for a fractured rib, Bob was in the ER with a separated shoulder, Bob fought a virus, which then was passed to me.  I started IV antibiotics and next week's transplant evaluation...needless to say, after next week and the IV's are over, I am highly anticipating some sort of celebratory event.  I'd say we deserve a little fun after all of this :)

Please send positive thoughts and energy to us as we take next week head on.  My Mom will be with Bob and I as we experience, yet another chapter in this journey. At the end of next week, we will be joined by my Dad, my brother, sister-law and our sweet nephew Dawson. And...we can't forget we'll have my parents little pup Pablo here in Houston all week!  Can't wait to have everyone in our neck of the woods for a few days.  Now...let's get this week over with!

Rebs