So, I am aware that it has been pretty close to a year since my last post, so I apologize now for it being lengthy, but what a year it has been. I guess I knew that CF was going to get worse as I got older, but how prepared can you ever be? I am very lucky to be able to say that I have recovered extremely well, considering all that's happened, whereas many other CF friends my age, don't.
Shortly after my last post, I started having alot of stomach issues, mainly with my gallbladder. There was some talk of taking it out, but that sort of settled a bit and went on the back burner once my lungs started "acting out" again.
For as long as I can remember, I have only cultured 2 bugs (Staph A. and Achromabactor X), with the occasional burst of the fungus Aspergillis. As a kid I always cultured psuedo, which is common, but I have seemed to outgrow that, and it hasn't showed up for close to 5 years.
Anyway, sometime around May, I culture Stenotroptamonas M for the first time, and the cough that came along with it was almost unbearable. Started on some orals, but it didn't kick it, so I had a PICC inserted the first week of July, and we were off. I have always considered myself lucky, because my body has always responded really well to IV meds and 2 to 3 weeks is usually long enough. Not this time. It was like my lungs were waiting with open arms for any and all intruders to inhabit them. Between May, and the 17 weeks I spent doing IV antibiotics, I had cultured my 2 regular bugs, the Aspergillis, the new Steno bug, another new fungal bug that I can't say OR spell, Candida of the lung, and then to top it all off, in August, I also cultured Burkholderia Cepacia for the first time. I do realize that to many people, these are all just a bunch of big words, but in the CF world, these are some of the worst things you can be told.
Luckily, my "bad bug" seems to be less serious, which let's me breathe just a little (no pun intended), but any bacteria is still bacteria and must be squashed.
So I finished up my 17 weeks of IV somewhere around the end of October, early November, still culturing most of these bugs, and in fairly high count. I was beginning to feel toxic (if that's the right word). Too many strong meds for too long, so I had my PICC line pulled. I decided to step up my au natural regimen just a little, and see if I can squash these suckers alone!
One month later, after being off ALL antibiotics, I headed back to clinic. I had been using only my own regimen, some pretty experimental, but my bugs were almost all GONE! It had showed up only LIGHT grown B. Cepacia, and very light growth Aspergillis. Another 6 weeks passed, 2 respiratory flu's and 1stomach bug later, the exact same, except some Staph had recultured (I am attributing that to the flu).
So even though I have not made it to my next goal YET, I still believe I will get there. My lung function over the past year has been up and down from 80%'s to 40%'s, but I am sitting here today back at 82%, and am getting ready to go on my first airplane EVER to Mexico, and that is nothing to complain about!!
No comments:
Post a Comment