Lauren had her yearly CF checkup earlier this month. She had to have a throat/lung culture, chest x-rays, blood work, and a regular checkup. I won't lie and say it was a breeze, because it wasn't...especially the blood work. After being stuck 3 times, they were finally able to get blood. The blood work is always the worst part! It never fails that I cry when they stick her. I'd give anything to be in her place. Alli came along too, and it was hard to explain why Lauren has to endure all of this poking and prodding.
The good news: Lauren's chest x-ray looked great, all of her blood work was super. Her vitamin D level had come up a great deal since last year, so we are able to stop supplementing the vitamin D.
The bad news: Lauren cultured pseudomonas on her throat/lung culture. What does this mean? Pseudomonas is a bacteria that for most people is no problem. For people with cystic fibrosis and those with suppressed immune systems, pseudomonas can be detrimental. For Lauren, it can cause lung damage and greatly reduce her lung function. It is also a very resistant type of bacteria meaning that antibiotics don't often kill it. Even though Lauren doesn't have any symptoms, we're being extremely aggressive in treating it.
In a nut shell: Her pulmonologist prescribed an inhaled antibiotic to hopefully eradicate it. Unfortunately, we've been through the ringer with the insurance company. The tobramycin required a prior authorization. The insurance company denied the prior authorization, and subsequently denied the doctor's appeal. The indications on the drug are for children 6 and older, however according to the CF Foundation's Pulmonary Guidelines, this drug is to be used regardless of age. The alternative to this is a 2 week hospital stay for IV antibiotic therapy. After a panicked call to PEBA, the appeal was overridden. Finding out that Lauren cultured this bacteria and facing the fact that insurance might not pay for this drug (which runs about $7000/month) was almost as stressful as learning Lauren had this horrible disease.
We received the drug on Friday afternoon, and started her treatment Friday night. She will nebulize this drug twice a day for the next 28 days, then will have another culture to see if the bacteria is gone. This adds another hour each day for her treatment, but we'll do whatever we have to.
