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Any updates? Are you still going to be doing this?

I guess I don't know what a fistula is then...I've only heard it as a term for a "boil" on your gums that indicates an abscess. Good luck on finding the info you need. Can you go to a different vascular surgeon for a 2nd opinion?

I remember you! I remember some of the photos you've posted and you work/worked for a newspaper. Is your name Ben? I am terrible with names!

My dd said the Vanco tastes horrible. My dd would keep a hard candy in her mouth while she is doing the neb.... That and have a drink near by. Now that she has had several rounds, it doesn't seem to bother her as much. She can make it through without the candy or the drink. Hopefully you will...

We have the RespirTech vest and like it. Although this is the only kind we have ever tried, so I don't know how it compares. One thing I like about it, it has a "quick start" setting. Basically, it cycles through different frequencies, going up and down throughout the treatment. I think most...

Don't have experience with colistin, but do with dry mouth. I had radiation treatment in the oral area, which killed the saliva glands. I have to do flouride treatments every night. If you want to keep doing colistin, but are worried about your teeth, talk to your doctor or dentist and see if...

Try this...http://www.cascadehealthcaresolutions.com/compressor-filter-felt-p/641042.htm This is the white filter, the black foam filter can be rinsed and then air dried. Out RT told us to rinse out the black filter once a month. Hope this helps. edited to add links...don't know what filter...

My daughter hasn't cultured PA, yet... but I'm sure I would be demanding some kind of treatment to try to eradicate it. I thought there had been a study to see what treatment was best. Pretty sure it involved taking cipro, along with doing several rounds of tobi. Best of luck in finding the...

This has been a rough year for my teenage daughter as well. She was hospitalized for the first time ever in January and again in October. Her normal pft is 110%+, her highest 116%. When she was hospitalized, her pft's had dropped below 90%. She cultures staph and aspergillus (blood test show no...

My daughter has been on it for just over a month. This has been a tough year for her. She had her first ever hospitalization in January and was hospitalized again in October. She normally is just above the 50% mark in BMI, but fell slightly off that mark. She just had no appetite what so ever...

I'm in. Did you notice that this was post #26 for you?

You could also ask her RT if there are any disposable nebs she can use with her medications. It might be a lot to pack, but she wouldn't have to worry about sterilization... and she would have room for souvenirs on the way home. And of course she would need some kind of inverter so she could...

I am usually not one for skipping treatments, but is there a way to alter her treatments so it would be easier? Are there meds that would be OK to skip for a week or so? If she is in good health I would consider doing albuterol puffers (instead of nebs) and using a flutter/acapella instead of...

Does he take any kind of acid blocker i.e. prevacid or prilosec? Those can help the enzymes work better. You should ask you doctor about it.

My 15 year old has been on it since diagnosis (8 years old). She was nebbing once a day, but her doctor recently increased it to twice a day.

In CF I don't think that clubbing is a sign of oxygen deprivation, just lung involvement. My daughter shows slight clubbing, and her O2 is normally 98+. Hopefully you will get some answers soon. It sounds like you are making some progress.

We are in California. She was diagnosed by Kaiser in Los Angeles.

I don't know if they will help, but there is a legal hotline that helps CFers with insurance and other issues. The lawyers name is Beth Sufian and here is the info.: To contact the hotline, call (800) 622-0385 or send an e-mail to CFLegal@cff.org Maybe explain that you can't get a CF...

What doctors are saying no CF? This is the listing from cff.org for a CF center in Arkansas... Arkansas Children's Hospital (PEDIATRIC) Little Rock, AR 72202 Appointments: (501) 364-4000 Director(s): John L. Carroll, M.D., Gulnur Com, M.D. If you haven't been to these doctors yet, you need to...

I don't recall ever hearing that a salt water pool is harmful to CFers. My sister has a salt water pool, and the salt cell produces chlorine for the pool. I think the whole issue, for chlorine or salt pools, is maintenance. As long as the pool is maintained, the safety should be the same for...