Re: To Joy in Oz...Re: Pseudomonas

[Guest guest]

This year I read that bugs resistant to azythromycin and clindomycin were found for up to six months after finishing a routine length course in the pharangeal swabs taken from healthy volunteers in a study, so might make sense that other abx would respond this way, also. I also read a recent recap of results of a study on the efficacy of surgery for CF (in kids, I think) which found no improvement in over-all longevity, so do look into this option carefully. Sometimes, though, if you feel your doc is really good it's best to go with his/her recommendation. I subscribe on-line to two medical web sites. One is called Journal Watch, which prints daily articles selected for their relevance to particular fields (it's meant for physicians). It costs, of course. Another is the NEJM e-letter for doctors, also. I don't pay for this one (could if one wanted) so can't access all of the artic

les, but still get some info. There's another, too, but will have to pass along name when I look at it again. Much useful and current info there.

Good luck!

Kay

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Hi Joy,

In Sept 07 I had a total hysterectomy and sinus surgery (2nd time). The next surgery planned is to remove lower and middle lobes of lungs where the PA is most concentrated...

You're right - the anesthesia is what caused me the most problems in Sept. I was on oxygen for 6 wks and didn't think I would ever get off of it.

So I don't look forward to another surgery. Plus I developed pneumonia after the surgery also. It was a bad experience.

However, Drs won't do the surgery unless my lung fcn (FEV1) improves from current 29% to high 40's or 50%. They expect it to drop after the surgery but I probably wouldn't make it it if base was as it is now.

I see a new Dr (a CF specialist) this week so I'll ask him your questions about Tobi....

Thanks,

joy hensby <endiandraixa (DOT) net.au> wrote:

Hi ,What was your surgery in Sept 07, and what is the surgery planned? What are the pros/cons of having/not having this surgery? Having had more 25 (lost count eventually) from infancy mostly to early 20s, and rest scattered later, I can say that the anaesthetic alone is severe for a healthy person and has enormous infection risk, even for a healthy person. I don’t know enough of your personal circumstances of course, but feel very apprehensive of surgery .... Other options are...? Is Tobi ‘Tobramycin’ (a penicillin?). Ciprox is the only oral ab left, I’ve read P aeruginosa develops resistance after several courses. My dr tells me if sufficient break between courses resistance drops (a placebo story or true? & how long effective...?). I have 3 veins for IV, hard going for 14 days, and told PICC line will be used next

time - another challenge on this hmm journey! I look back at the years I worked full-time, bedding soaked by night sweats (wash every day) hacking cough 2-4 x night ...and wonder how I did it. Maybe it’s your last line – “Guess we just have to keep going...right?” Since childhood I can’t think of any year without unwellness of some sort, even if not bronchitis primarily. I gave up the last few p-t work last year - asked to work more hours, said no. I do voluntary work, which allows one’s own pace, doesn’t pay $ but keeps some interest in life. At least not working allows time for other fulfilling activities, or to rest...Joy (from Oz)-- Sentient beings, all our very own mothers, are as limitless as space

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