My PICC site infection looked better yesterday and today and my blood cultures are still negative. Thank the Lord! I am still running fevers. The lab promised HAHAHAHAHA that we will have the fungal drug sensitivities by Friday that they failed to order a month ago when I really needed them. Well, surprise, surprise, the lab has failed me again. Today they failed to provide us with vital fungal drug sensitivities that we have been awaiting to make treatment decisions
I am too exhausted and sick to fight this negligence right now, but I have decided if I have to drive 3 hours round trip to IU's labs to deliver all future culture samples, that is what I am going to do. My doctor and I have fought too hard to keep me alive to let this lab's negligence kill me.
For my local blog readers, I would be amiss if I did not tell you that MEDLAB is the laboratory that continues to make errors on me. Just last month when I went to their lab for blood cultures to be drawn (a very critical test that demands sterile technique to be used for the blood draw), the lab tech first tried to prep the site with only alcohol. I demanded betadyne or chloraprep (they did not have). I provided my own betadyne, The tech cleaned the area and then BENT OVER AND BLEW ON THE CLEAN AREA. I was appalled. I told her that she just blew her germs all over my sterile site for the blood draw. I made her reclean the area before drawing the cultures. This is an example of the errors and ignorance that is displayed continually by these people. If you are concerned about you and your family's lab results being accurate, you need to investigate the labs you are utilizing. Another tech repeatedly refused to listen to me when I told her that with my blood cultures I require two sets of cultures drawn from two sites. She drew one set from one site. And once I left, I was called and told to return to the lab because of a "problem" (what a surprise!) The problem being that I was correct and the uninformed tech refused to listed to an informed patient. If I listed all of the lab errors just from June, you would shake your head in dismay. Can you sense my frustration?
One positive outcome of these 4 weeks of IV treatments is that I have received daily IV steroids as premedications due to the recent drug reaction. Guess who now has platelets of 180,000 [50000 before steroids] and hemoglobin of 12.9 [9 before steroids] which has given me a reprieve from Stage 4 to Stage 2! My CLL has always responded to steroids, one of the earliest CLL treatments used. Too bad steroids are used with such risks and their benefits are normally short-lived. For today, I will celebrate "only" being a Stage 2 leukemia patient!
In collaboration with my doctor, we have decided to take a break over the weekend from the IVs. I am exhausted beyond description and I really need rest. More importantly, we need to observe and determine if my fevers and coughs worsen or improve without the IVs. If they worsen, more treatments will be indicated. If they improve, there is a slight chance that one of the drugs is causing the cough and fevers (side effects).
I asked (thankfully) that my IgG level be rechecked today (since I was given the wrong brand in September and had to stop it and I only received half a dose). The IgG was quite low, so I only thought I wouldn't be at the cancer center on Monday - back I will go for IVIG all day on Monday. Keep donating blood - this is the treatment that takes the immunoglobulins from 3000-5000 blood donors to make my one treatment - no wonder it costs nearly $10,000 every 28 days.
I am thankful to see "all things working together for good" in this situation. Today my doctor told me that it is a miracle that I have survived all of these infections since June. I told her the Good Lord Above is responsible for that miracle. All thanks be to Him (especially for His protection and care through so many errors of man). God is still on His throne!
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