Wednesday, February 23, 2011


You think things are going well....but then they just go backwards. I have been having migraine headaches for about 8 days now (since last Monday evening). I had been unable to identify the underlying cause, and nothing was really relieving the pain. I'm not one to get headaches period, so to have migraines is a pretty big deal....especially when unresponsive to Advil, Tylenol, Excedrin Migraine, etc. So I finally called my transplant coordinator who had a call into the doc to call me in a specific drug to treat migraine headaches. While waiting for her to call me back, My mom asked me to check my oxygen saturation....which i feel kind of dumb to have not thought of that myself, considering I did that all the time before my transplant. After transplant, you tend to not check those things as frequently, and I don't normally have issues with my O2 sats anyway.

So when I checked them they were in the 80s (87-88%). Crap! So I called my coordinator back and she had me come to clinic today. After checking my O2 sats yesterday, i started putting some pieces together. First of all, I have been extremely fatigued/tired...probably 90% worse than normal. Last week I did start coughing junk up, but it subsided with the initiation of TOBI and Xopenex aerosol. I just haven't felt great the last week or so, but didn't really think anything about it. This morning before I left my house, my oxygen saturation was 88%.

So the verdict from clinic today: No pneumonia (which is good)..probably bronchitis or other respiratory infection. My lungs actually sounded ok. My PFTs, however, dropped 15% from 3 weeks ago (today it was 34/32%, compared to the first of February being around 49%). My oxygen saturation was initially 94% when checked. However, my coordinator had one of the nurses "walk me" around clinic and monitor my sats while doing so. They ranged between 88-89%. So based on my signs/symptoms, oxygen levels and PFTs.....this is what my doc prescribed:

Oxygen 2 liters at night (during the day if I feel like I need it)
IV antibiotics (home version)
Steroid boost
Finish round of inhaled TOBI

So not exactly happy with the outcome, considering I haven't had the best record of staying well the last 6 months. This is the 3rd round of IV abx since the GI hospital stay. And...I haven't had to use oxygen really since my transplant (with the exception of temporarily during 2 hospital stays with pneumonia). Doc said the oxygen should be temporary. I'll go back to clinic in 1 month to be re-evaluated.

So...with all said, hopefully these "scripts" will knock this infection out for good. Psych clinicals start next week....tests galore...crazy!!! Busy week this week with other stuff too....what the heck...every week is busy...LOL!

I did manage to get a B on my Pharmacology test last week...however, after studying for 2 straight weeks, I had high hopes of making a "high B" or better yet an "A." Maybe next exam.

Speaking of transplant, this Friday, February 25th, I will be celebrating God's wonderful gift given to me 7 years ago....the 2nd chance at life. 


Alicia said...

I love hearing your story because even when you're going through rough things you have so much hope! Early congrats on your transplant anniversary! I'm so happy for you. I pray you will be feeling back to your "norm" very soon. "B" is still a GREAT score, but I wish you better next time just because you do!

Jamie said...

I wanted to post on your blog "7 years" but you must have deleted it or you are revising it. . .so I will post it here!

HAPPY 7th RE-BIRTHDAY!!! I love that you are celebrating 7 years post transplant :) It sounds like you have had a rough winter and I pray things get better and you're doing good. Celebrate Big! You deserve it!!

Jane said...

I hope the O2 helps your headaches! And happy early transplantaversery.