So I must say, that last post...although sincere, was just a smidge depressing. I apologize for that sort of. I mean I meant all of it, just as it reads, but even as I reread it, it has that "the last thing Lianna is gonna say" feel to it. That is FAR from the truth. I got a lotta things to do yet.
As it is, it turned out that I again had pseudomonas. So my Pulmonologist suggested that I just do the same thing the Cystic Fibrosis patients do and continue the 28 days on the med, and then 28 days off the med. on a consistant basis in the hopes that maybe it can regulate the severity of the symptoms, and the frequency of the contagious factor. Since the Tobramycin (also called "Tobi") costs $5,000.00 for a 28 day supply, I am very very very thankful that I have good insurance, AND the "out of pocket maximum for prescription drugs" clause, which means that once I reach a certain out of pocket or copay, then there is no copay for me for most of my medications, for the remainder of the fiscal year (july-july). I met that max paying just $123 and some odd cents with this last box of solution this past week. I take other medications as weel, but it has been this one that I am confident is responsible for the rapid meeting of the max $$. It is relieving in some way to know that I won't have pay more than that for most of my other prescriptions until NEXT July. There is one that I still have to pay a portion of no matter what my out of pocket max is. Because the medication helps me so much, I am willing, and prepared to foot the bill for it.
Anyway, I have been to see my doctors in the past few months, and I just had a ton of blood work done that I will find out the results of on Monday (tomorrow). If it is anything of significance, I will post the findings. In the mean time, I treat the next bout of pseudomonas with MORE Tobramycin. I was kind of feeling bad the other day at work and was talking with a co-worker about all the meds that I have had to be on for my lungs. I mentioned something about "why can't I just be admitted to the hospital for 2 weeks, do a IV clean-out like the other CF patients do, and then be good to go for a few months?" Well, I don't know how I missed this, but apparently MOST of the other CF patients have to do the Tobi nebulized treatments between their hospital visits as well! So there again....MY life isn't as bad as I thought. It still stinks that there is all of this pain and stuff, but in a weird way, I felt better knowing that the worst that can happen ISN'T happening yet.
I also had a spinal tap done by my Neurosurgeon because I was eager to rule out any infection that might be lingering in the cerebral spinal fluid. The tests came back "normal". At least normal for me....given the number of surgeries I have had and everything that goes with that. I really really hope it stays that way. The doctor did the procedure at my insistance. I appreciated that very much, even though it wasn't a comfortable procedure, the peace of mind it brought to me made the whole thing worth it.
I will write more later when I get more results from further testing. For now....Be well, and God Bless!
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