Sunday, October 17, 2010

Sensitivities...or lack thereof

Culture shows moderate mucoid PA (normal) and Achromobacter which wasnt there last time but seems to be there more (my theory anyway) when I'm sick.

PA is susc to colistin, zosyn, and piperacillin
AB is susc to ceftazimide, meropenem, and piperacillin

Germ Factories started early & Clinic Tracking

This year in MI the germ factories seem to have started early and whatever has been going around has left a number of people with pneumonia. We were not overlooked. After all three of us had a cold I was just starting to feel better but had a cough hanging on and then WHAMMO I started feeling worse. I was wondering if my lungs were going down hill when Lillian came down with a fever and I knew we had.....round two. Lillian had a fever for 6 days and ended up needing antibiotics. The bugs in my lungs went wild and I was very productive and increased cough.

After checking my last culture showed up sensitive to cipro which I havent used in a few years and for the record I detest and nromally doesnt work. We decided based on my numbers below that something had to be done so we decided to give cipro a go and change our minds if needed based on the culture and how I did.

7Oct2010 FVC94 (down 33) FEV1 88 (down 26) FEV25-75 82 (down20)
Notes: I'd been sick for 3 weeks. I've fallen off the anti-inflammatory eating but am still taking 5LAC, Lauricidin, and doing green smoothies. New clinic new machine reference numbers so need to start tracking volumes. FVC3.81 FEV1 3.00 FEV25-75 2.94

23Apr2010 FVC 127 FEV1 114 (up 14% WOW) FEV25-75 102 (up 12% WOW)

Notes: this is especially fantastic given my allergies are running wild and I have seen a drop in my peak flow the past few days from it. I normally write down my PEF (peak flow) but he pointed out that mine was off the chart this time, my Peak flow was 11.82 which equates to 150 L/min higher than two months ago i.e. the little plastic things we use measures in L/min.

Clinic Notes: Discussed recent treatment for candida. Fatigue, chronic pain, pleural pain, all gone. Lung functions are the best on record and it is after no drugs or steroids where as the 108% last year was after serious steroids. Please see here for all details:

18Feb2010 FVC 110 FEV1 100 (down 4% more-total8%) FEV25-75 90 (up 2%)
Clinic Notes: This was post IV's (stopped Christmas Eve) and 2 rounds prednisone totaling 5 weeks (1st round stopped New Years day and 2nd round was 3 weeks in January). Infection is gone but still having chronic pain on left side when breathing, especially deep breathing, still intermitten pleurisy, still fatigued and not feeling right, feel like I do right before I get a bleed. Discussed potentially entering chronic pain phase of CF (I do not accept this). Also started drinking mucomyst N-acetylcysteine since last visit so reported good results in gastro area from this, no large effect noted on the lungs. Discussed going to CA to consult with Dr.Moss on inflammation and also discussed pursuing testing for candida with family doctor.

**oops missed a couple, need to dig around and find those**

3May2009 FVC 118 FEV1 104 (down 4%) FEV25-75% 88 (up 1%)

Clinic Notes: re-check post steroids and pre-pregnancy (attempt). Everything looks great, feeling good, allergies are problematic and doc did say that my theory on my allergic reactions having residual inflammatory effect on my lungs (which I did another week steroids for) was very possible. His pregnancy recommendations are to be vigilent with physiotherapy especially hit it hard in 2nd tri' to get ready for 3rd when lungs are most compromised and there is the biggest risk.

March2009: FVC FEV1 108 FEV25-75% 87
Clinic Notes: Recheck after end of steroids, feeling good. Best FEV1 ever!

29Feb2009 FVC 111 FEV1 100 (down 3%) FEV25-75% 88 (down 14%)
Clinic Notes: feel inflammatory in nature start 2 weeks steroids 40mg taper. Still got streaking in day 2 steroids.

15Dec2008 FEV1 103 FEV25-75 102%
Clinic Notes: summer steroids early winter cold w 3 weeks cipro)

21Feb2008: FVC 105.3 FEV1 99.3 FEV25-75% 89.1 BP 114/68 HR 59 Wt152
Clinic Notes: was getting huge variability and felt something 'stuck'

25Jun2007: FVC 105 FEV1 97 FEV25-75% 82

4Dec2007: FVC 99 FEV1 91 FEV25-75% 77