An Update & Request for Prayer: October 10, 2010

We implemented our plan to take a break from the IV treatments this weekend. It was such a welcome relief after four straight weeks of IV's, seven days a week. My veins cheered! It is amazing what we accomplished by being home instead of the hospital all weekend. I probably over-did it, but it was enjoyable just to clean house and cook!  This IV vacation was, in part, scheduled to see if the cough or fevers improved without the drugs. Micafungin's prescribing information lists cough and fevers as potential side effects. My fevers have been lower this weekend but the cough continues.

My NIH (National Institutes of Health, Bethesda, Maryland) doctor, Dr. M. connected my family doctor to Dr. B., who is the NIH Chief of Infectious Disease. I am blessed and forever grateful for doctors from around the world who have generously given their time, expertise and knowledge to benefit me. I have one of the best teams of doctors that anyone could ask for with this battle.

Dr. B shared extensively with my local doctor. This consultation has resulted in an emerging very hectic week. Please pray that I will have God-breathed strength to maintain this schedule. I am exhausted but I am certain we must remain vigilent and not retreat from battling this infection or it will take my life. Forward. March.

Monday - all day IVIG treatment
Tuesday - Hopefully a day at home
Wednesday - Appointment with family doctor. Acupunture. High resolution CT and pulmonary function tests (part of Dr. B's recommendations).
Thursday - Indianapolis to Infectious Disease Doctor
Friday - Pulmonologist. Possible Bronchoscopy and sinus endoscope beginning of next week to obtain cultures IF we can locate a lab that will guarantee timely, accurate Identification and Drug Sensitivities for all pathogens.

A summary of the insights of the NIH Infectious Disease Chief, I include here for other patients who might benefit.

The current mold identified from my lungs is Alternaria. Dr. B. writes: "it can definitely be a very bad infection". Often times, the local lab identifies organisms on cultures as "normal flora" and normal flora they may very well be for "normal" people. But as we have suspected, Dr. B confirmed that these "normal flora" may very well be pathogens (infection causing) for me. Thus, we need to locate a lab who will identify ALL pathogens and organisms - normal flora or not. Please pray specifically for the door to open to the lab I need.

He confirms that my current protocol of prophylactic medications including Posaconazole (antifungal), Acyclovir (antiviral) and Cipro (antibiotic) is appropriate for me. He shares that it is inevitable that I will become resistant to drugs since I take so many and so often. However, Dr. B. believes "on the average we believe prophylaxis is superior than no prophylaxis".

You might recall that we are always concerned about the risks of PCP (a dangerous type of pneumonia contracted by people with low CD 4 counts like mine). He supported our decision to hold on taking PCP prophylactic drugs at this time. They are challenging drugs for people without drug allergies like myself, so we have been cautiously hesitant to initiate PCP prophylaxis.

I inquired about restoration of my CD 4 T-cells and immune system. It appears that only transplant has the potential to restore T-Cell and immune function, if one can survive the transplant.

I specifically asked about the effect low dose splenic irradiation will have on my damaged immune function, if I pursue radiation in the future. I was pleasantly surprised to learn from Dr. B. that he feels that the low dose splenic irradiation will only slightly worsen my immune function. He suggested that I transition from Cipro to an antibiotic with better anti-pneumococcal activity if I begin radiation.

Thank you for your continued prayers.