Blood Moon 2014 |
Rewind to earlier in the day. I went to Denver for my post hospital doctor's appointment. I thought it would be a quick in and out but unfortunately I got the full CF team treatment--dietitian (yes, I know which foods are rich in iron and yes, I am fully aware of good protein sources as well and I consciously eat them; it just doesn't seem to make a difference to my blood!); social worker (yes, I feel supported and I know I can call your office any time with concerns I have with my care.) Maybe at this point, the careful reader has noticed a wee bit of irritation with quite normal and average things...thank you steroids for making me irrationally annoyed.
As my appointment progressed, I was able to chill a bit thanks to the reports I got. My pft's were back up to 29% and my lungs sounded good under the stethoscope. Finally, a bit of good news for a change! Dr. S was very encouraged that our new regimen actually gave better results than we thought at discharge. I believe it was getting off the Vancomycin, which tends to seize up my airways, which allowed the progress to be recognized.
We also discussed my treatment plan going forward. I am going to stay on my two IV meds and be desensitized to Cipro on Thursday.If I tolerate that well, then we will take away an IV med the following week and the last med a week after that. Then I will be on oral Cipro for the total of a month before stopping it too. At that point we will see if my body is able to maintain a reasonable level of stability (longer than the current three weeks) before needing additional intervention.
Rheid and I were both so happy to get a good report and have a plan. We talked about maybe taking a trip to visit family or something fun while I was feeling so good. We thought ahead. We dared to think we were due a break.
Fast forward to later that night. After my restless legs were starting to settle down and sleep felt like it was within my grasp, I coughed. Not hard. One small throat clearing cough and I was on my way to dreamland. Then the blood came. Then the sleep fled. Then the plans stopped. Then I felt defeated. Not the blood I had anticipated seeing all day--no matter how much I wished it was. I can only look to the heavens for strength to look forward.
Oh, cyster... I can relate and I feel for you! It's those nights that are really scary you just have to have faith! Love you... thinking of you and praying for you daily! You can always ANY TIME call me if you wanna talk. xo
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