An Update & Request for Prayer: September 27, 2010

My breathing and coughing worsened more and more last night. We debated a trip to the hospital but my body revolts at the thought of another hospital admission. We realized that over the weekend that I began struggling to breathe more and more during the IV's and for several hours after the IV. Overnight I began contemplating if it could be possible that the actual IV antifungal being used to clear the fungal pulmonary infection could be contributing to these difficulties.

I called my doctor first thing this morning. After discussing my worsening condition, I asked her it if could be possible that since I am receiving double the dose of this drug than I have ever taken before, if it could still be inducing a long-term type of anaphylactic drug reaction, thus all of the coughing and shortness of breath? We decided it would be worth a trial run of returning to my 50 mg/ml dose (versus 100 mg/ml) for a few days. If the symptoms continue to worsen with the lower dose, we would know that the infection versus the drug is more likely the cause of my problems.

I received my IV today and it is now almost 6 hours post-IV and I have had very little coughing and wheezing compared to the past week or so. Possibly, we are onto something! I am so hopeful because it is quite discouraging to go through all of these IV's with harsh medications and just continue to worsen.

I have had a bad sinus headache with pressure behind my eyes today, so we will need to consider if another endoscope of the sinuses needs to be performed to obtain more samples. Fevers continue and I just feel rather lousy overall.

The tip where my PICC line inserts into my arm was a bit red today when the dressing was changed. Please pray that this is not the beginning of yet another infection.

Although, I am not considered technically neutropenic (neutrophils under 1500), my doctors decided today to petition the insurance to pay for an additional five days of Neupogen injections to offer additional protection as I battle these serious infections. Thankfully, BCBS agreed and I received the first of five shots this afternoon. My body's immune system needs all of the help it can get these days!

I am researching some herbal options for treatment of fungal infections. I will update about what herbs I decide to use at a later time.

I have been compiling a chart for my Infectious Disease doctor to review. It spans the dates of June 1 - today, September 27. I think if he can see what drugs I used when; when symptoms improved or worsened; and other factors such as labs, temperatures, etc., he might be able to detect a pattern that could help us to resolve this cycle.

I wanted to cry as I worked on the chart. It has been almost 4 months and almost everyday - over 120 days-I have been at doctors, hospitals, receiving IV's, ill, running fevers, and fighting for my life. To see all of this written out on paper was striking and I must admit, a bit discouraging.

Please pray for a breakthrough for me. I know my family is as weary as I am as we wade through these days turned into weeks turned into months of infections and leukemia challenges.