We are here to extend our lives by THINKING DIFFERENT

Saturday, December 13, 2008

International Travel Tips

Recently returned from Europe and I'm just updating a few tips that I've learned (gasp!) 6 years later. Happy travels!

Update 10/28/14


Well, I'm heading off for a few weeks overseas and I'm recalling all the mishaps and mistakes I've made over the years traveling abroad.

It occurred to me that, like the other CF stuff I post, I should post this stuff in hopes it will prevent the frustrations I've had while traveling. Let me know if you have any other tips you would like to add to the list to help others! :)

BTW keep checking back. As I pack for my trip (and while I'm abroad and realize what mistakes I made this time hahaha) I'll keep adding to the post.

  • Look up how to say and describe Cystic Fibrosis in the language of the place you're going. If you're going to Europe, this might not be a big deal. But as I found out when I was ill in Japan on my last trip, it was super helpful to have a blurb written in Japanese describing what in the world this disease was (CF isn't as common in Japan as it is in Europe, as I'm sure you know). How to do this? Go to wikipedia.org. type cystic fibrosis in the search bar, and then select the language you want. Yup, now the next page will be in a language you can't read. But there should be an article that you can click on that says "Name = Cystic Fibrosis." Print that article out (there should be some pictures in the article) and keep it with you while traveling. It will save you some hassle

  • Get your doc's recommendations for IV/PO antibiotic dosing should you need to be treated overseas. I'm not on IV's that often so I can't always recall what dosing I typically get - and typically CFer's get a much higher antibiotic dose than the everyday population. While I was in Japan I have a rough time getting Cipro 750mg 3x a day... they thought I was nuts. So I had an alternative Levaquin dose that my doc said would work that the Japanese would give me. Making sure you get the right dose will make sure you get better sooner!

  • Make sure your compressor and Vest will work abroad. My PARI ProNeb Ultra does not work in Europe, nor does my Respirtech vest, and I need a huge transformer (not just a little adapter thing) to make sure those suckers work abroad. So I take my eFlow (battery powered) and my old school HilRom 104 that has a buit in transformer when I go to Europe. Before I got my eFlow I just invested in a PARI ProNeb Ultra Euro style becasue I was going often. In Japan, the compressor didn't work either - the juice wasn't enough so the PSI wasn't high enough and I wasn't getting my meds correctly (not to mention everything was taking FOREVER to neb). So again, the eFlow is an option here and additionally I bought a PARI ProNeb Ultra for Japan. Yey for 3 continents of compressors! But the Respirtech worked just fine in Japan. Oh yes and beware of that PARI Trek - the PSI is not high enough for TOBI or Pulmozyme! Better get an eFLow or continent-specific ProNeb Ultra :)

  • Buy disposable nebs. I am militant about santizing my nebs after each use (boil or soak in alcohol after each use to ensure I'm not re-breathing in bacteria that's been growing on the neb between treatments). But often times I don't have time to do all this cleaning when I travel. So I pack a billion disposable nebs when I travel. These Hudson Updraft II's are disposable (use 'em once, toss 'em) and aren't HORRIBLy expensive - and are approved to be used with Pulmozyme!!! . Well worth it to save the time from having to santize meds or risk getting sick from not cleaning properly. I literally pack 100 in a big suit case for a 3 week trip (use 4 a day for 21 days) and then I have an empty suit case to bring goodies back home! http://www.medplususa.com/list-product_info-p-Hudson_UP_DRAFT_II_OPTI_NEB_Nebulizer_with_Tee_Mouthpiece_and_7_Tubing-pid-8395.html

  • Bring a doctor's note for your Vest, compressor, meds and those 100 disposable nebs. Some places I've gone I've been fine with all my equipment, but other places I've been accused of doing all sorts of ridiculous things. But since all we're trying to do is live our lives as CFer's, get your doc to write a letter saying all this stuff is medically necessary (but NO, it's NOT oxygen and you won't be using it on the plane). This can help expedite customers / security, etc.

  • Keep all meds in original containers. Yup, it takes up more space to do this. But it's always nice to have your name on the Rx label proving that these meds are yours for your use, and you're not some criminal doing something that is a no-no. Update: I have been putting meds in individual plastic bags and taking a pic of the Rx bottle label and taping it on the plastic bag. Saves a lot of space from bottles

  • Bring extras of everything. I will never forget when a family member had to stay abroad for an extra week due to 9/11. Planes weren't allowed to fly in for quite a bit of time and as a result his trip was unexpectedly extended. What would happen if he would have been a CFer and ran out of meds overseas???? It's not fun to think of 9/11, but there are all sorts of reasons why your trip could be unexpectedly extended and I always pack extra meds just in case I need them!

  • Bring all meds/compressor/Vest as carry on. Yup, it's A LOT of stuff. And it's hard to lug around. And most likely the airline will give you hell about it. But you know what's worse? Being without your meds/compressor/Vest for a few days while the airline tries to find your lost luggage. I bought several little Samsonite 4 wheel carry on luggage things to bring on board with me - 1 for my Vest and 1 for my compressor and meds and 2-3 days worth of disposable nebs (I can't fit all 100 as carry on!!!). Don't let any airline person talk you out of this.... it must be carried on!!!! If necessary, remind the airline that they'll be responsible for your $20k Vest if it's broken by them.... better you carry it on with you

  • Bring your own yeast infection treatment. I didn't realize how widely these treatments can vary and currently on my trip right now I wish I had my tried and true Monostat! ahhhhhhhh!

  • Bring your own tampons. Of the 10+ countries I've been to in Europe and 2 in Asia, the only tampons available were OB brand. Most American women are NOT a fan of those and would like to be able to use an applicator. And pads just don't always cut it. So BYOT. Update: My recent trip to Germany revealed tampons are being sold with applicators. Not sure if that's the case for all of Europe, but thumbs up for Germany!

  • This is thanks to Nightwriter (thank you for this great idea): not all countries have isopropyl alcohol to clean your nebs. When I was in France they would only let me buy a small amount at once and it was hard to find. So bring your own (yes, takes a lot of space but use it up and you have room for souveniers to bring back with you!). Thanks again for the tip Nightwriter!

  • In 2012 I was marvelously diagnosed with CFRD so packing needles, insulin, are now a fun part of my travel adventures. Definitely call to make sure your hotel room has a refrigerator (this makes sense for domestic travel too of course). I found that the mini bar often isn't cold enough. Great for pulmozyme as well

  • Sinusitis has also become part of my nightmare since my last update, so making sure my sinuses are taken care of and not infecting my lungs is a priority. It's difficult to find a way to boil water in a hotel room to sterilize to shoot the water in your nose. Domestically I typically get an Rx for sterile water at the pharmacy at my destination and then pour in my Neil Med bottle. Neil Med luckily offers NasaMist Saline Spray pre filled sterile water sprays. Yes, you probably can't put your other meds in the spray like you might at home (steroid, antibiotic), but it's much better than nothing, right?

Thursday, December 4, 2008

Stanford visit

Disclaimer: I share with you all this information in the spirit of good health. I am not here to promote anything any doctors have recommended, nor do I intend to make any doctor upset by me posting his/her name/information/recommendations. My sole purpose for this post is to help my fellow CFer's gain an upper hand on this horrible disease.

So I decided a few months back to head to Stanford's CF Center for a consultation. As many of you who know me know, checking out other CF Centers is a fav pastime of mine. Well, not really, but I did go to Minnesota in 2006 and I visited Cincinnati this summer so this will make my 3rd excursion.

I originally didn't have much of an agenda when I made the apt to see Dr. Weill, Director of the Adult CF Center at Stanford. But I've been dealing with a decreased FEV1 the past few months which has lead to ABPA suspicion, so the consultation ended up being perfect timing.

I'll first list my initial top line impressions, then I'll go into specifics about my personal care and his subsequent recommendations.

  • Infection control was not as stringent as my clinic. Scales aren't wiped down after each patient; chairs at the nurse's station and the actual examination room aren't wiped down; blood pressure cuffs aren't changed in between patients nor are they wiped down; CF patients aren't given masks/gloves when they check in; doc, nurses, PFT tech didn't gown up when around me; I'm a MDRPA patient so all of this was VERY surprising to me and very very different from my clinic.... i thought for sure what my clinic did was CFF protocol!!!! bleh
  • The clinic is very tech savvy: they post patient education days on the web; I was encouraged by Dr. Weill to email him; the clinic was riddled with posters encouraging patients to check out their website or to research such and such thing on another website
  • The clinic is very multi-disciplinarian - ENT works extremely closely with Pulm, as does Gastro and Allergy; this is NOT the case with my CF team by any stretch of the imagination and I think that this close link improves patient outcomes.... CF is NOT simply a "mucus in the lungs" disease by any means!!!

Background Before Visit

Just so you have some context behind my visit. I haven't had fevers, increase in sputum, increased fatigue or decreased exercise tolerance yet my FEV1 is down by about 10%. I did, however, have to discontinue cromolyn sodium for 5+ months because the manufacturer disc. Thankfully the past 2 weeks I was able to get the med back but the thought is that maybe discontinuing this med that has caused massive inflammation (from the severe environmental allergies I have or maybe the aspergillis that I've culture for 5+ years).

Doc back home did an IgE aspergillis specific (1.83 was the result - high). Home doc not convinced it's ABPA because I'm not wheezing, etc.

CT Scan has showed no fungus balls, but rather slight increase in mucus plugging and slight increase in broncheactasis since last CT scan 12 months ago. I have been switched from flovent MDI to Advair to see if the long acting bronchodilator helps with inflammation. I'll be re-doing PFT's on Monday, Dec 8.

Another issue I've been having the past 12 months is night sweats. Hormones have been checked; OGTT done; not eating high carbs right before bed; TB tested; the whole 9 years. ENT and doc hypothesize it might be sinus junk but I don't really look bad enough for surgery.

Stanford Visit Findings

A few fun things that I think will be useful moving forward:

  • Regarding ABPA, Dr. Weill couldn't be sure because he didn't have the CT scan (will send to him when I get a hard copy) but he told me that he does an IgE test every clinic visit for his patients. If the # is >1000, patients get 1 week of steroids and voriconazole even if they aren't showing symptoms. Something I will be thinking about when further examining my ABPA possible issue
  • Interesting rinkle in the year long night sweat saga: Dr. Weill feels that my decrease in lung function and night sweats could be due to nocternal aspiration of gastric juice due to bad GERD. He says he has done some barium test (ph probe, mannometry, and esophagram.) and many CFer's show no other GERD symptoms but they're aspirating and it's causing inflammation/harm to the lungs. So I'll be investigating that and increasing my PPI dose from once a day to twice a day (btw i have since increased my PPI dose from 1x to 2x a day and night sweats are gone since December 2008. YEY! i will soon be looking into doing the above mentioned tests anyway, though...)

So I have a bit to talk to my doc about when I see him on Monday. But I think these two tidbits of info were helpful for me and might be for anyone out there looking for answers to night sweats or interested in aggressively treating inflammation/fungal troubles.

Let me know if you have any questions/comments/advice/etc. This was a great trip and I just may put Denver or UNC next on my list of clinics to visit in the coming years.... it's always nice to see what everyone else is up to :)

Saturday, November 22, 2008

1st Visit

Well I'm thrilled to report that I have started the TIGER II study - the 2nd Phase III trial of Inspire's Denufosol.

If you want to read about the TIGER I results, the 1st Phase III trial check out: http://www.medicalnewstoday.com/articles/126926.php

So today was the inclusion/exclusion visit. So they did the "what meds are you? what is your genotype? when were you diagnosed?" stuff. They also did:

  • Blood Test
  • Urine sample (test for pregnancy)
  • Basic PFT (make sure FEV1 > 75%)

They sent me home with a nice stipend along with a daily diary to record how I'm feeling every night (are you tired? have you felt feverish? are you coughing a lot?).

So I guess I'll hear back in the next week or so if I fit all the criteria. I'm sure I'll be fine, but I guess they have to go through all the wonderful formalities :)

I'm pretty excited to get this party started. Of course I hope I don't get placebo but that's all part of the game, right? Placebo or drug, I'm still helping to get this drug on the market!

Stay tuned....

Thursday, November 20, 2008

How to get Cromolyn Sodium

So it has taken me FOREVER to get a hold of cromolyn sodium. Who knew that pharmacies wouldn't want to make money off of me by filling my prescription?!?!?!

Bottomline is this: if you want the easiest way to get a hold of cromolyn, go to a Walgreens. There are several Walgreens throughout the US who have bought Cromolyn directly from Teva pharmaceuticals and they should be able to get some for you as well.

If you have trouble, like I did, call Robyn with customer service at Teva. She is FANTASTIC. +1-215-591-3000.

I'm so happy to have this med back!!!!!!!!

Thursday, October 30, 2008

Cromolyn Sodium back

I know not many CFer's take cromolyn sodium, but for those who do, it's back in pharmacies!!!

Teva pharmaceuticals began production about 4 weeks ago and meds should be in pharmacies. Teva sad to try Walgreens first.


Thursday, October 2, 2008

How to prevent 2ndary infections while in the hospital

Hey guys,

As we all know, we're suseptable to picking up 2ndary infections while in the hospital just trying to get our original infection under control.

The WSJ today had an article talking about superbugs, but gave a great web site to inform patients on how to be [B] proactive [/B], my fav word, to prevent 2ndary infections.

"After the deaht of their 27-year-old son, Josh, linked to a gram negative bacterium, Victoria and Armando Nahum started a non-profit group to raise awareness of pevention. Their group promotes steps each patient can take in hospitals."


The site looks a bit "commercially" instead of "non-profit-y" at least in my opinion, but rest assured it is a non-profit with the aim of helping the most vulnerable of patients such as us CFer's.

Sunday, September 7, 2008

3 foot rule

I haven't read tammykrumrey's entire storie, but from what I gather the family depended on the "3 Foot rule" to reduce Cepacia transmission.

I am hoping hoping hoping hoping I read this wrong - or I didn't read everything.

But as most of you know (or should know) the 3 foot rule prevents air borne transmission of bacteria (sneeze, cough, etc).

But if those two CFer's were in the same house, cepacia can appear on couches, door handles, chairs, tables, carpets, walls, ANYWHERE the cepacia kid wipes/coughes/sneezes snot/spit/sputum.

This fact should be common knowledge among the entire CF community so I'm posting this on my blog in case it isn't.

My heart just sank when I read Tammy's posts..... I'm still holding on to the hope that I mis-read or mis-understood her posts that those kids were anywhere near eachother. But there's a reason we wear (or CFF protocol calls for us to wear) masks and gloves at clinic and why clinic rooms are wiped down after each patient. It's not proximity that can necessarily harm us - bacteria can live on surfaces for 72+ hours!!!!!

My heart really does go out for Tammy's kid with cepacia.... it's just so sad if in fact cross-contamination did occure.....

Tuesday, September 2, 2008

Allergies and your liver

Allergra is not metabolized by the liver whereas claritin, clarinex, and zyrtec are.

Our livers are already under pressure by having CF, and with all the meds we take, it's nice to give the liver a break.

Because allergra is not heptatically metabolized, I have known some top allergists to rx 180 mg 2-3 times a day if need (this is NOT referring to Allegra-D, which contains pseudo ephedrine..... I'm referring to the plain Allegra 180mg). You can NOT do this with zyrtec or claritin.

Saturday, August 16, 2008

CFRI eFlow info

I still haven't heard from the eFlow people, nor have I heard from my CF Center regarding any info they picked up at the Denver Conference.

However, CFRI apparently had a discussion about the device, and a DVD about the event can be ordered here.....


Offers DVD and Audio CD-Rom

of the eFlow® Presentation

October 25, 2006

(Please circle your choice of Audio CD or DVD)

Topics/Speakers Audio CD-Rom or DVD

It's All About Time- eFlow® Electronic Nebulizer
Terry Lyn Bishop, RCP & Bill Aikins of SourceCF

(62 minutes) Disc 1

Single DVD $3.00

Single CD $1.00

The speakers' presentations are reproduced in DVD-R (DVD minus R) and are compatible with most DVD players. The enclosed DVD can easily be played on PC computers and many newer DVD players. There are other DVD players that have been identified to playback only DVD+R (DVD plus R), DVD+RW or DVD-RW and may not play the DVD-R. Examining the specifications of the owner's manual will help identify these DVD players.

Depending on the number of orders and time needed to complete them, your patience is appreciated.

(Please circle your selections and send in your order with check or credit card information)


Address_____________________________City____________________State_____Zip Code __________ Telephone________________Email___________________________# of DVDs/CDs ordered ________

Card Account Number_______________________________________ Expiration Date _______________

Amount Submitted $_____________Signature________________________________________________

Please mail to:

Cystic Fibrosis Research, Inc.

2672 Bayshore Pkwy, Suite 520

Mountain View, CA 94043

or fax to 650-404-9981.

Questions? 650-404-9975 cfri@cfri.org

Please note that the pricing for the educational DVDs and CDs are for shipping and handling only.

eFlow Diary

You read it right - I just had a decrease in eFlow treatment time.

Colistin was taking me 8.5 minutes... this morning it was 7 minutes on the dot. (remember, colistin takes upwards of 20 minutes with traditional nebs)

Why? Foundation Care sent me a sonic jewelry cleaner from WalMart (free - aren't they great???). I stuck the head in the "La Sonic Supreme" over night and took it out before use this morning.

BAM! shaved 1.5 minutes off my treatment time. I think that's cool as heck. :) :) :) :)

I know more and more of you are jumping on the eFlow bandwagon and getting more of your life back. Thank you for all of your PM's. I love hearing from you all.


Well since I last posted about my eFlow times, things haven't changed. At all. Which I found strange.

I expected the times to increase gradually over time. But they haven't. I just had that spike at about 2 weeks when times increased by 2 minutes a treatment.

And I'm embarassed to say this, but I'm doing it for the sake of others reading it - I know now why the times increased.

I flew to New Jersey & back around the time the treatment times increased. And I didn't keep the head in alcohol for the plane ride because I figured I would spill it all over myself or have a hard time keeping it level.

I can't believe I didn't connect the two events. It seems so obvious now. But this is exactly why treatment times increased right at that time, and treatment times haven't increased since then.

Okie doke (I picked that phrase up from Minnesota when I went.... [I] everyone [/I] said it there) . So two things I've learned: one, as has been told to me, if you take care of the eFlow head, treatment times should remain short. And two, taking the head out of the alcohol, even for 6 hours, will affect treatment times.

So I'm going to have to figure out a strategy for TSA not to freak out at me when I go to paris in 2 weeks. And I'll have to figure out a way to keep the darn thing level while flying.

But it will be worth it! I don't have to bring a seperate PARI ProNeb Ultra (American ones don't work in Europe, in case you weren't aware.... even with the outlet converter. I had to buy a whole new compressor specifically for Europe when I was there a year ago) but instead I can bring my small, compact, battery operated eFlow!

I will continue to keep you all posted on my findings. And to those of you who have received push back from your physicians - stay tenacious! Studies are out there. More and more people are using the eFlow. There's no reason why your lungs should be left out.

Afterall, who has more of a interest in your health than you?


Well I started Colistin in the eFlow last night.

1st time I've ever used Colistin, eFLow or not, so I didn't know what to expect other than my doc told me my tongue might go numb (I think that's hysterical). But it didn't.

I'm not sure how long Colistin is supposed to take with a traditional neb since I've never do it that way, but it's taking me about 9.5 minutes.

That will be a nice time-saver since I'm leaving for Paris in 2 weeks and of course I will want to maximize my time NOT doing meds while on vacation.

Also I've heard that you need to mix the stuff - I get mine pre-mixed from Foundation Care in little ampules (just like Pulmozyme). It's nice not to have to mix.

I'll keep you all posted on my eFlow adventure....


I want to keep you guys in the loop of my eFlow experience.

It's been two weeks that i've had the thing and I've learned quite a bunch.

I was told (corrected) that I need to rinse the "head" in distilled water instead of tap water due to the mineral content of tap water.

Treatment time has increased from 2 minutes to 4.5 with my albuterol + cromolyn sodium. Pulmozyme has gone from 3 minutes to 5. And HTS has gone from 8 minutes to 9.5

So treatment time for all meds but HTS are about what they were with my traditional neb. HTS is still 17 minutes less than with my traditional neb, which is a huge time saver.

Additionally, all those plugs I've been coughing up I'm convinced is from the eFlow's high rate of respirable dose.

Foundation Care is sending me a jewelry cleaner from Walmart that people have had success with for cleanign the head.

The lady at Foundation Care did say that she sees less clogging with eFlows that are used for just colistamethate or tobramycin. Of course, that makes sense.

But I'll continue to report to you all my neb timing, cleaning procedures, etc.


Well I was feeling kind of tight days 2-4 using the eFlow. I was going to wait it out to see if it was the fires out here in LA, seasonal allergies, or some eFlow defect I was going to have to tell everyone about.

Then days 5-8, I've been coughing up mucus plugs. More so than I have the past few years of my life combined. That's why I was tight.... my plugs were working their way up through my larger airways.

I spoke to Mike Schulz over at Foundation Care and he says that more medicine is getting into newer parts of my lungs than with the traditional neb. Not all of his patients cough up plugs but he's heard it before.

He wants me to call him after my PFT's on Friday. He thinks my FEV1 could be higher as well as my 75-25 which has been decreasing quite a bit over the past few years.

I'll keep you guys posted.....


So the eFlow is working just great - 7 days after I got it.

I'm cleaning & disinfecting it just as I stated - except for the past 3 days I've been in NJ so instead of using the dishwasher I'm using the tupperwear that Foundation Care sent me to clean with soap & water & disinfect with 70% alcohol.

I've been closely monitoring neb times and they're identical to those that I was timing 7 days ago.

I'll keep you all posted on neb times as time goes on....

But the shortened time has been amazing. I'm able to socialize/network more on my biz trip, but still get decent amount of sleep.

The device is tiny so it takes up less space in my luggage which is always fabulous. I carry on all my meds so the smaller the devices the easier for me to lug around the airport.


Since 130 people read my eFlow II, I didn't want to go back and modify it for fear that those 130 people wouldn't return back & would thus miss the new pics.

Here is that eFlow head for any and all that are interested:



above is the "head"

Here is a pic of the bowl that Foundation Care gave me to soak the head in alcohol after rinsing it in distilled water. The head stays in the bowl until I'm ready to use it for my next treatment.

They don't want you to soak any other part of the whole head device than the metal head itself. I found out from Jem that those prongs don't need to stay out of the alcohol (as in the pic). Foundation Care just instructed me to do that so I could save alcohol. Weird.



Two above pics are the "head"

And finally here are the other parts of the eFlow that I toss into the dishwasher after every use.


Hopefully I'll have a video soon of the eFlow and my old compressor so you can compare the noise. You won't believe the difference!


Here is a pic of the device compared to the size of my PARI LC Plus and my PARI ProNeb Ultra compressor so you guys can get a feel for the size of the thing. Basically, it's smaller than the compressor & there's no neb so it saves space.


Here is a pic of me puting cromolyn sodium into the eFlow. You take off this dome thing, squeeze in the med, then put the dome part back on :) Also you can see the on/off button which is the black thing on the bottom of the picture.


Now he's a pic of what the "cup" looks like after meds have been put in. It holds 4mL and you can easily see how many mL's you have put in.


Finally, I wanted to show how you can modify the eFlow. You can hold the device all together if you wish. Or you can use this attachment to seperate the mouth piece & med cup from the power source (the saucer shaped blue thing). This is nice because it makes it easier to hold the mouth piece with your teeth & chat with you all!

You can see the blue & white dome better in this pic that you have to remove to put the meds in the device.


I am posting this right away because I owe so much to this site and I try to do anything I can to give back. Similarly to my trip to see Warwick, it never would have dawned on me to visit him if it weren't for some of you posting last summer about visiting him. So I posted his letter so that all may benefit from my visit.

I didn't even know that the eFlow existed until I came to this site. Fortunately some of you were generous enough to post about the fact that you had it, how you got it, etc. So I am eager to give back as much information to the site as possible so that all may benefit from this huge improvement in technology.

I'll say it until I can't speak anymore - information makes people with CF live longer. In this case, with the eFlow,

eFlow = time savings
time savings = greater compliance
greater compliance = longer life.


It's here. I have the eFlow. And it's fantastic

I did my first treatment in the middle of the day cuz I couldn't wait to use it. I did 2.5mg of cromolyn sodium combined with 0.5mg of albuterol.

I felt like I was doing my 1st dose of hypertonic saline all over again. That stuff was POTENT! wooooo!!!! For the 1st time in years, the albuterol made me jittery.

So, this combination of cromolyn sodium + albuterol used to take me 7 minutes. Now it takes 2 minutes.

Pulmozyme takes 3 minute with the eFlow instead of 5 minutes with my PARI LC Plus + PARI ProNeb Ultra

Hypertonic saline at 5mL, 7% took 27 minutes. Now I'm doing 4mL and it's probably working out to be able 6.5% of HTS which took about 10 minutes.

So what used to take me 39 minutes of nebs is now 15 minutes. That's 24 minutes of time savings, twice a day.

I just had 48 minutes added to my day. Unreal.

The cool thing is how quiet the thing is. You can barely hear it! And it shuts itself off one the medicine is done - so no more guessing if you're truely finished with the neb or not. I can't believe how quiet it is - I'm going to have to take a video so you all can hear.

I used it plugged in, but you can use it with batteries too. Which makes it great for overseas traveling (I had a seperate PARI ProNeb just for Euro travel). And I can use it on a palne too!!!!

The cleaning is not the nightmare people on this site have made it out to be. Probably, as I hypothesized a few months ago, because I do neb cleaning twice a day anyway, so this isn't anything different for me.

Foundation care provided two plastic bowls for me with lids. The "head" (which I'll take a pic of and post) you rinse in distilled water.. Then you put it in alcohol and you leave it there until you're ready to use it again.

The second bowl is for the rest of the parts which are more or less kind of sort of similar to the regular neb parts. They're plastic and some parts are blue soft things. So same difference. Foudnation care instructs us to put one dab of soap they provide in the bowl, shake it up with distilled water for 2 minutes and then let air dry.

I told the guy that I don't think this is sufficient sanitizing so he said I could leave the parts in alcohol after every treatment if i wanted to. Or i could boil. Or i could simply put them in the dishwasher as we've all discussed a million times and ensure that the water gets up above 158 degrees.

Guess what I chose? Dishwasher.

OK, that's all for now. I need to go eat. But I'll post more later and if you have questions, post on here and I'll answer in my next post.


Well, here are the studies. Cold, hard studies.

They were presented at the NACF. If your doc is telling you that the eFlow hasn't been studied, present these posters, and your physician's ignorance will be corrected.

Simple as that.


Low particle size variation is extremely important. There is an ideal particle size where the drug is most useable by the body. If the particle is too small or too large, the drug is unusable and basically it goes to waste. This is why the eFlow requires a smaller amount of drug - because its output of particles are more frequently of a useable size than any other nebulizer. And with a smaller amount of drug, neb time is shorter! It's an exciting technology.


I don't know about you guys, but with my PARI Pro Neb Ultra as my compressor and my PARI LC Plus nebulizers, I take Albuterol/Intal, Pulmozyme and then Hypertonic Saline 7% which takes me a total of 45 minutes. Then I do the Vest for 30 minutes.

So if I could cut that not even in half, but maybe from 45 minutes to 30, that would give me an extra 15 minutes in the morning and 15 minutes in the evening.

And when I do TOBI, I could do it in the car with my eFlow. My drive time to work varies, but gosh with the eFlow I'm sure it won't be more than 10 minutes.

My device is on order - and I would encourage ALL OF YOU regardless of insurance status to contact www.SourceCF.com. Even if you have Medicaid or crappy HMO/PPO insurance, chances are SourceCF can get one of these for you. I'm serious. You'll never know unless you call....


Hey guys,

I'm investigating purchasing an eFlow. It's been a long journey of information gathering over the past 24 hours.

At first I thought the eFlow wasn't available in the US. Then I found it is available, and has been since Nov 2004, but the FDA has given its approval only for use with CF patients. This is why you don't find the eFlow on the PARI US website.

So I contacted PARI, but they couldn't give me many specifics about the device's use with typical CF meds because they claim that the FDA doesn't allow device manufacturers to discuss the device's use with specific medications.

So I had talked to Foundation Care, one of the 3 pharmacies in the US that is approved to sell the eFlow.

I spoke to Mike Schultz, PharmD this morning.

Here is what I found out (in no specific order):

-The eFlow is $1680 for the unit, $2100 for a year due to cost of replacement parts
-Its covered by a good # of insurances
-What needs to be replaced? Its this metal disk that has 4000 microscopically drilled holes that allows medication to be aerosolized. It needs to be replaced every 90 days
-This metal disk needs to be cleaned after each use (ie if you do albuterol, pulmozyme, HTS in the AM, you need to clean it right after use and let it dry before you use it in the PM)
-The eFlow comes with a cleaning kit & instructions to faciliate cleaning
-Every drug for CF imaginable has been used in the eFlow, including Colistin, TOBI, Tobramycin, HTC, Albuterol, Pulmozyme, etc.
-How is the device tested? In vitro studies. They compare what the PARI LC Plus otuputs with a particular med and then they compare what the eFlow puts out. Turns out the eFlow puts out many more droplets than the PARI LC Plus, so usually less medication can be used with the eFlow.
-There are 650 patients in the US currently using the device
-eFlow will be at the North American CF Conference in Denver in 2 weeks. Call your doc up and tell him/her to attend the eFlow booth to get more information

If you want information mailed to you, email lindsay@foundcare.com

Say that you know someone who spoke with Mike Schulz this morning and you would like more information.

I'll let you guys know what else I find out. I'm going to talk to my boyfriend's dad who is a doc in Austria to see if PARI has any other studies/informatoin out in Europe.


eFLow learnings

I wanted to update you all on more information that I have learned regarding the eFlow.

1. The only medications that require dosage adjustment with the eFlow are antibiotics. This was a big concern for me because if I get my meds through my specific mail order pharmacy (or PBM), it's cheaper than if I go to another pharmacy. Like anyone, I want the cheapest option possible because med costs can add up. My albuterol, my cromolyn sodium, my pulmozyme and my HTS all require [U] no dosage adjustment [/U]. So I can continue to order nebs as usual.

2. Those who have negative side effects from pulmozyme or TOBI/tobramycin may see some of those side effects go away. Hoarse voice/sore throat and stomach aches from TOBI/tobra and/or pulmozyme will most likely go away because the eFlow produces particles that aren't large enough to hang out in the throat. The particles that hang out in the throat are larger than 5-7 microns - which the eFlow produces significantly low volumes of (lower than a traditional neb/compressor). The eFlow's particles are so small that they slip off of the throat and go right into the lungs.

So if you're thinking that your insurance might not cover the eFlow, this could be great prior authorization verbiage (although the specialty pharmacies that provide the eFlow are pratically masters at prior auth's).

3. The size of the particles that the eFlow doesn't just reduce side effects or increase the administration time - the eFlow actually helps the meds go down further in the lungs. And these depths of the lungs are where infection/inflammation typically occure. So, like the Vest, the eFlow isn't just a convenience item. [B] it's an improvement in care [/B]

Mike Schulz from Foundation Care has been incredible in answering all of my questions. He is very wise to realize that the more patients understand what they're doing with their meds & nebs, the more likely they will be compliant and will receive the immense benefits of the product. Wise man. Any of you on the West coast that are considering the eFlow, I would highly highly HIGHLY recommend giving Mike Schulz a call. You will learn so much more than you ever imaged.

eFlow studies

I realize that some of these studies are hard to read, and I'm sorry for that. I'm doing my best to find better pictures and/or links so you can read them better.

In the mean time, my reco is to right click on the pictures, save them to your desktop, and print them out. As ridiculous as it sounds, if you're passionate enough, use a magnifying glass to read. Yup, I said it. Magnifying glass :)

But you have my word that I'm doing my best to find you all better copies.

****if the pictures don't show up clearly, click on each picture. it will open up in a new window giving you the ability to zoom ***

These are from the German PARI site....







More studies....







Thursday, August 7, 2008

Description of Visit to see Warwick

September 21, 2006

Well, I'm exhausted. It's been a long day.

But my visit was Warwick was very informative. I learned about what he is currently researching (which I haven't heard anywhere else including this site) as well as his reasoning behind certain therapies that he uses.

He also showed me that my Vest jacket wasn't fitting me correctly. At all.

I'm too tired to detail it all right now, but I'll type up a long list of the details of what I learned tomorrow probably.

I think you all will be fascinated. I was.

September 22, 2006

So I'm finally sitting down to type about my visit with Warwick yesterday - where I learned a ton.

I've decided that I'm going to type on a topic one at a time... I got so overwhelmed thinking of typing all the info at once. And I do feel morally obligated to share all that I have learned to everyone in the CF Community. Information is so powerful with this disease - that there's no way I can just keep it to myself (which is the philosophy that I have when I post on the threads as well).

Before I type on my first topic, I want to put my visit in conext. And put Dr. Warwick in context. This will set the tone.

Dr. Warwick is 78 years old. He has been working with CF patients since the 1960s (maybe earlier but that's what he mentioned). This man invented the concept of high frequency chest compression (what many of us call "The Vest" even though there are many many versoins of it). He also has pioneered the use of many other therapies such as Mucomyst as well as the mist chamber (no longer used).

Dr. Warwick's patient population lives an average of 11 years more than the average of other centers around the United States. There are other centers in the US which have similar demographics to his (patient population size, race, income) but do not produce his results in terms of life expectancy.

Dr. Warwick has seen patients move from a life expectancy of 5 or 6 years old when he first worked with CFers to their 50s now.

And he is convinced that this success has nothing to do with him. His patients have taught him everything.

He has a passion for this disease that I haven't encountered with another practitioner in my lifetime. He is constantly reading what others have to say about CF and is always conducting experiments and studies on his own to confirm or deny his latest thoughts about CF.

So this is the context in which I wish to present what I have learned from Warwick.

No human on this earth is correct 100% of the time. And I suspect that some of his views on certain issues are going to provoke a great deal of discussion. So remember when I post, I am not saying that I agree with or disagree with what Dr. Warwick has said. I am simply posting what was discussed for the benefit of all CFers who come across this blog. Everyone will take what they will from it (as they do what on the threads).

And I wish I could post more now, but I'm off to my tour of the U of MN school of management. I'll post on my 1st topic tonight when I get back for evening meds.

September 22, 2006 Part II

So my mom and I had a blast at the Mall of America. We shopped for 6 hours. And covered every square inch of the place. TALK ABOUT EXERCISE!!!!!

And my apologies about my tease this morning. I really did think I would be able to talk about topic 1. But my new method of doing my Vest did allow me all that much type as I anticipated to type.

So Topic 1 from Warwick is going to be the Vest. Good topic in my opinion since the man came up with High Frequency Chest Compression.

First thing's 1st. Warwick had me bring my actual Vest (not the machine) to the visit. And what do you know - he said mine was the worst fitting jacket he had ever seen. Sweet. I wear an adult Small size jacket (not the Minnesota style...and I didn't even know there were different styles). Warwick said that the jacket didn't go up high enough (the middle part goes straight across the middle of my breasts) - it should be up to my collar bones. And the bottom is too low - shaking parts of me where I don't have lungs.

Oh yes and the straps were too lose. He says to messure the cicumference of your chest. Then at 10% to that. That should be the circumference of the Vest (how tight you should have it). Of course mine was wrong

His next question was what type of High Frequency Chest Compression device I had. I have the HillRom Vest 104. This lead into a discussion about types of frequency waves that these devices produce (and lead to my next question about his "new" device).

According to Dr. Warwick, the HillRom Vest 103 is superior in wave frequency shape than the HillRom Vest 104. But he submitted to me that the 104 is probably a better choice because I travel overseas so much (the 103 gave me an inguinal hernia from carrying it around Europe...along with a transformer for the darn thing).

So he moved over to the chalkboard in the room and drew the shape of waves that each device produces. But first, he stopped to inform me that he does receive royalties from the ICS system by Respirtech. He does not from HillRom. I replied that I hope that he makes some money for all the decades of research and contribution he has made for the improvement of CFer's lives. But he is all about full-disclosure.

The 103 HillRom Vest produces a sine shaped wave form. Which Warwick claims is superior for mucus clearance. I think, but cannot remember correctly, that my 104 produces a square wave form. Whichever shape it is, he says that his studies have proven this to be inferior.

Let me step back a bit. Warwick has many, many graduate and PhD students that work with him. They conduct vast amounts of research that Warwick claims he doesn't want to publish because there are too many hoops to jump through. He uses the results in his own patient population, however.

Warwick's newest High Frequency Chest Compressor produces waves in a triangle form. By measuring the amount of mucus that is produce and the amount of air that comes out of a patient's mouth during use, Warwick has concluded that the triangle wave form is the best form thus far.

You can read a peer-reviewed article at http://www.respirtech.com/images/whitepaperLO.pdf

While I was at the clinic, Warwick told me and the PFT nurse confirmed that a recent study involving his triangle waveform Vest was just conducted. He has no idea about the protocols nor the results. However the results will be presented next Thursday.

So, a mixed bag. We have one peer reviewed article on the Respirtech InCourage Vest and more studies to be revealed. Of course I'll email him on Thursday to check out the results. He said he'd let me know good or bad.

Our next discussion was about the frequencies and pressures with which I use my current HillRom Vest 104. I have been using the same frequencies since I started using a Vest 9 years ago. Someone long ago just told me what to do - and I haven't changed it. In terms of pressure - I just always used 5 because it seemed to be in the middle of the road. I did each of 3 frequencies (8, 14, 18) for 10 minutes for a total of 30 minutes.

No no no says Warwick. So he drew me a nifty chart. Which I wish I could put in excel format.

He has measured, definitively, the optimal frequencies for maximum sputum production. 6, 8, 9, 18, 19, 20. Each to be done for 5 minutes each.

In terms of pressure, there's a sliding scale. To find the pressure that's best for you, you start at frequency 6. And pressure 3. Then you take a few breaths. If that's easy for you to breath, then you move to pressure 4. If you're cool with that, then pressure 5. At some point, you'll reach a point where it's uncomfortable to breath. When you reach that point, chose the pressure below that and stick with that.

For me, at frequency 6, pressure 8 was too hard to breath. So pressure 7 is optimal for me. For frequency 6.

So the sliding scale is as follows - when I move to frequencies 8 and 9, I must move 1 pressure point down to pressure 6. And when I move to frequencies 18, 19, 20, I move to pressure 5.

So if you were good at pressure 10 for frequency 6, you would move to pressure 9 at frequencies 8,9 and then pressure 7 for frequencies 18,19,20 (I don't know why it's not 8....but he purposely did it that way). Hopefully I can find a way to post this chart.

Once we had that down, I wanted to know what his thoughts were on Europeans and Canadians not using the Vest. And studies that show manual CPT are just as good as HFCC.

His first comment was that he wishes the American healthcare system was more socialized like the Euros.

His second comment was that the studies that show euqality between manual CPT and HFCC must not have used optimal HFCC settings. LIke the ones I have been using the past 9 years. He says there is no question in his mind that his patients are so healthy because many of them have used HFCC for so many years (more so than the rest of patients in the US). It's better that manual CPT. And he believed that before he started to get royalties from Respirtech.

So that's it for today. There are many many more topics that I would like to write about in detail. But for today, this is enough. I hope you all find it useful.

September 24, 2006

Well, I am safely back in LA. I almost had a heart attack when i landed in Burbank and found that SC was only up 3-0 against Arizona at the 1/2.

So, since I have described my experience with HFCC, the next natural topic I feel is mucus. And sputum.

First I learned the difference between mucus and sputum. I thought they were synonymous. Nope.

Mucus is what everyone has in their lungs and sinus cavities. Everyone meaning even those without CF. It's meant to help lubricate the airways and nasal passages and assist in trapping foreign particles to be taken out of the lungs and sinuses.

Warwick believes that CFers have a normal amount of mucus. It just happens to be dehydrated.

Dehydrated mucus is a great living space for bacteria. Then inflammation occures. And white blood cells attack. And white blood cells die. And bacteria die. And they produce waste. Yadi Yadi.

This creates sputum. It's mucus plus everything else that occures in a CFers lungs due to the mucus' dehydrated state.

Warwick believes that as long as the sputum is kept mobile (through proper coughing techniques and HFCC), infection and other complications can often be avoided.

So along the lines of sputum, Warwick taught me a new way of coughing. He read a recent article discussing reptitive coughing causing damage to healthy airways of those with Chronic Obstructive Pulmonary Disease. He says that he would like the study to be duplicated to provide solid proof, but he has a feeling it will be.

So on that note, he taught me a new way of coughing (new to me anyway) to help my "lungs cough by themselves", as he put it.

This is how it's done. You take a normal breath. But you don't let the air out. Then you take another normal breath. And you don't let the air out. (not DEEP breaths...normal intake of breath). Then you repeat until you can't let any air in. Make sure not to take subsequent breaths in quick succession. Take the breaths as if you were breathing normally. A cough should come afterwards.

Let me warn you - i took me a solid 48 hours to the hang of this thing. And I tried probably once an hour to do it for 10 hours a day (plus after each 5 minute frequency session with my Vest).

And I still can't suck in enough air most of the time to cough reflexively. I usually have to let out a cough. So I'm going to have to email Warwick or ask those from his clinic that have been taught the cough to help me figure out what I'm doing wrong.

But I do have to say I was feeling really congested and short of breath while walking around the airport today. And I couldn't get whatever gunk out that was causing the problem. But I tried the new cough technique - and I got out a nice hung of junk. And not my normal thin, smooth stuff. This stuff was chunky and thick. That made me happy.

So, this cough, as I said, should be done after each 5 minutes of your total 6 frequency series on your Vest.

Warwick also mentioned several times during the consultation that I wasn't coughing enough. Like many CFers, my cough frequency varies from hour to hour. But when I'm at my baseline, I don't cough a whole lot.

Warwick wasn't happy with that. He said I need to purposely cough more often. Using the method he taught me. When I come to a stop sign, cough (I drive a lot at my job). When I change radio stations, cough. Yadi Yadi. Basically, get the gunk out that's causing the infection.

So I forgot to talk about the theory behind the cough. Warwick thinks that this technique can get air behind the sputum. And the air will force the sputum out.

So that's it for tonight. Next topics I'm thinking of talking about are antibiotic frequency (I know I've posted about the Denmark way of doing IV's), CF outlook, communication with phsycians, Mucomyst, CFers experimenting with treatments and having children.

Hope everyone is well. FIGHT ON.

September 24, 2006 PART II

Quoof was kind enough to send me the New Yorker article on Dr. Warwick.

I read it myself a week after it was published almost 2 years ago....and I haven't read it since until today.

It's incredible how similar Warwick is in the article and in person.

He spoke to me about experimenting and how to interpret my results. He used the stereo stethascope. He grilled me about why my PFT's were at 95% instead of 105%. And he challenged me to figure out new ways to make my lungs better than the average person's without CF.

So here's the article for any of you who haven't read it. It's quite fascinating how closely my clinic visit mirrors what is captured in the article.

And thanks Quoof for sending this to me.


September 25, 2006

So we've gone from HFCC, to sputum, and now I want to talk about IV antibiotics and hospitalization.

This topic came up when I visited Warwick because of the recent article I posted on this site about th Danish way of doing IV therapy - every 3 months regardless of health.

Warwick considers hospitalization a failure. But not a failure of the patient. A 100% failure on the shoulders of the physician. He feels that it is his job and the job of every CF doc to ensure that sputum clearance and medication adherence is such that patients don't deteriorate to a point where they need hospitalization. With proper clearance (HFCC) and adherence, patients should remain stable.

He submitted that many physicians don't like the perspective that responsability lies solely on their shoulders. But he says that its up to us as patients to teach this perspective to our docs. And its up to the docs to dig, and dig, to figure out why a patient slips into a need for hospitalization.

Warwick was looking at my records and saw that I was in the hospital last Sept 2005. He asked me why I was in the hospital? Told him I flew to the USC home opener against Hawaii in Hawaii and stood in the blazing hot sun without properly hydrating. Then I flew back to LA the next day and flew out to DC for an NIH study. Long story short, I exhausted myself with too much travel.

He looked at me, puzzled. "What else did you learn?" I didn't have much else than that. "Drink more water????" I replied. He told me that I need to have a heart to heart with my doc every time I'm in the hospital to figure out how the situation can be avoided. Hospitalization shouldn't become standard in CF therapy... it's a big red flag of failure.

So I asked him about the Danish way. He said that the every 3 month thing is probably because of lack of HFCC. He says patients wouldn't need all the hospitalizations if they kept their sputum coming up properly. He also added that there's probably a $ component to the hospitalizations as well.

I think it's pretty phenominal to have two drastically different views on hospitalization, yet two similarly unusual life expectancies (living into 40s and 50s).

So there's the Warwick view on IV antibiotics. Next topic will be Pulmozyme, Hypertonic Salene and Mucomyst.

September 26, 2006

My apologies for not posting last night. I was at the Stanford Women's Information Session. It seems like an incredible MBA school.... anyone have any connections to help me get in?????

So next topic is Pulmozyme, Hypertonic Salene and Mucomyst.

I asked Warwick what his thoughts were on the incredible new development of Hypertonic Salene. It had helped me cough up a bunch of plugs as well as help induce more coughing all together (he said I didn't cough enough, remember?).

He replied that he wasn't all that thrilled. he agrees that Hypertonic Salene is better than placebo or better than doing nothing, but he's not a fan.

Nor is he a fan of Pulmozyme. He claims that his patients do better when they dont' take it. Remember that he is big into his patients experimenting and teaching them how to experiment. He in fact went on to say that he thinks that for his patients the drug does do more harm than good.

He is a fan, as you all have heard, of Mucomyst. And this was one of the biggest a-ha moments for me during the visit. Mucomyst, for those who don't know (and I had no clue what the drug was made of) is N-Acetyl Cysteine. Sound familiar? It did to me once he said it. There has been a HUGE amount of research on this anti-oxident as it relates to CFpateints.

It is thought that CF patients are so suseptable to virulent bacteria because of a lack of Glutathione in the body. And it is thought that N-Acetyle Cysteine is the best building block to put into the body to induce Glutathione production. In fact, in pill form, the body gets more glutathione well all is said and done if N-Acetyle Cysteine is ingested as opposed to pure Glutathione. You can read more about the anti-oxidents on the internet.... Warwick didn't go into it in depth with me.

But as soon as Warwick said N-Acetyle Cysteine I perked up and blurted out "Glutathione!!!!" And he replied "You have just revealed of yourself how much research you are doing." DAMN STRAIGHT.

So Mucomyst goes directly into the airways, right where glutathione is missing in the lungs. And the theory goes that it produces glutathione, thins sputum and helps the body help itself in defending infections.

Warwick mentioned that some of his patients take an oral N-Acetyle Cysteine, mostly when they're on vacation or short on time and don't have time to take their Mucomyst. He says he hasn't seen benefits of doing the Mucomyst and taking the oral NAC.

So that was our conversation about Mucomyst, NAC, Pulmozyme and Hypertonic Salene. Not sure what my next topic will be but I'll try to post it tomorrow night

Well, I know we've all wondered this. And we've all probably gotten different answers from each of our physicians.

Can we do nebs while using the Vest????

I asked Dr. Warwick this in an email. And as I've said in everything else I've posted about Dr. Warwick, i post his reply in the spirit of information. Information can help CF patients live better, longer lives. And I know Warwick strongly believes this so I post his reply publically in the hopes that it will help other CFers out there.

Warwick lets his patients do nebs, as long as they aren't antibiotics, while doing the Vest.

No kidding. The inventor of the Vest, the man whose patients live in average 10 years longer than the US average, has his patients do this.

So for me, I'm doing it. It will save me so much time! Yey!!!!

Hopefully it will save you all time as well. Or at the very least, assure you that what you've been doing is correct. :)

I'll be back on later with eFlow news.... I have 3 more hours to work :)

Warwick's Vest Letter from 2007

I post this in the spirit of information sharing to my fellow CFers. Warwick is so dedicated to CF care that it is my assumption that he would be ok with me posting this to help and prolong the lives of my fellow CFers.

Everything that follows are his words:


Warren J. Warwick,
March 27, 2007


The four High Frequency Chest Compression (HFCC) systems in use today are the asymmetric sine waveform machines (the ElectroMed SmartVest and the Hill/Rom Model 104tm and Model 105tm, the symmetrical sine waveform Hill/Rom Model 103tm and the triangle waveform Respirtech InCourage Systemtm. All but the Hill/Rom Model 103tm, the most widely used HFCC system, are commercially available. The symmetrical sine waveform Hill/Rom Model 103tm is, in my opinion, better than the asymmetric sine waveform machines I expect it to be in use for many years,

The positive aspects of using HFCC therapy include; the simplicity of the HFCC technology, the ease of its use, and that it always works with 100% of the settings on the dials over the whole time of therapy. I believe that HFCC will always provide better treatment than other effective techniques including manual chest clearance, Autogenic Breathing and Active Cycle Breathing as well as the Flutter and Acapella.


HFCC works most effectively when patients breathe with their normal pattern of short inspiration and longer passive expiration. When the patient breaths at the prescribed highest pressures that are tolerated for each frequency the chest compressions, push micro-coughs of air flow through the airways and at the same time oscillating the air in the airway passages. There is a separate simultaneously beneficial effect, for patients with cystic fibrosis, for whom the triangle waveform pressure pulsations will increase the amount of water secreted by the respiratory mucous secreting cells and glands.

I recommend two HFCC therapy sessions of 30 minutes every day for routine preventive therapy (with a pause to cough about every five minutes of HFCC therapy). When the patient has a worsening lung problem, I recommend doing three HFCC therapy sessions a day with up to 60 minutes for therapy each session.


The sine waveform vests must be inflated before HFCC can start. That inflating compression pressure on the chest reduces the patient's lung volume making breathing difficult. Before HFCC therapy starts, every patient must use extra energy and more muscles to breathe. In addition, the Hill-Rom machines must have a tube disconnected from the vest or the machine after each 5 minutes so that the patient will be able to take the deep breath require for coughing.

With the InCourage Systemtm and The SmartVesttm the vest pressure drops to atmospheric pressure when compression pulses stop so a tube does not need to be detached.

Our prescription for HFCC frequencies was developed over 16 years ago measuring the airflow and velocity on 100 patients with CF who used the same vest with each machine. We found a wide scatter of 'best' velocities and volumes; sometimes with several frequencies having almost identical 'best' values. Milla CE, Hansen LG, Warwick WJ. Different Frequencies Should Be Prescribed For Different High Frequency Chest Compression Machines. Biomed Instrum Technol. 2006 Jul-Aug;40(4):319-24. Every frequency was a best frequency for at least one patient. For the sine waveform machine 103tm machine, and by analogy interpreting that data for all triangle waveform machines the best frequencies for large volumes are 6, 8 and 9 Hz and the best frequencies for highest velocities are 18, 19 and 20 Hz. The least effective frequencies are 10 to 17 Hz. Each of these frequencies is used for five minutes in any order followed with a pause for the patient to cough to clear the moved sputum.

With the original square waveform (101TM and 102tm) machines and the triangle waveform inCourage machine both the best flows and volumes are 6, 7, 8, 10, 11 and 14 Hz. The "triangle waveform" frequencies are the same as the square waveform machines.
For the inCourage System I recommend frequencies 6, 7, 8, 10, 11 and 14 for individual frequencies but I prefer the "Quick Start" that continuously, pulse by pulse, increases from 6 to 14 and then from 14 to 6 Hz over a five minute cycle followed with a pause for the patient to cough to clear the moved sputum.


The sine waveform interaction between frequencies and pressures was recognized immediately after the Model 103TM became available for which we developed a clinical adjustment and a teaching table that has now been improved by laboratory research. The guideline for the use of the table remained unchanged. The pressure change is in the 18, 19, and 20 table line for two "4's" for the 103TM and for two "5's" for the 1004TM.

For the "sine waveform" machines, the pressure column is determined by starting with frequency 6 and pressure 3. Then after a few breaths increasing the pressure to 4. If the patient notices no difference to increase the pressure 5 dial setting...and so forth... until the parent notices that the new pressure changes the breathing pattern or the patient complains that the new pressure makes breathing harder. That frequency is TOO high.

The previous lower pressure column is then selected to use to reduce the vest pressure at higher frequencies. For example if the patient notices a difference in breathing with pressure 7 then the patient should use pressure column 6 for all the frequencies. This will need to be checked each year for a growing child in good health and more frequently if changes in height or growth or health are significant.

Patients using Model 103tm or any "symmetric sine waveform" system should adjust frequencies and pressures using the Table for the Model 103tm with frequencies 6, 8, 9, 18, 19 and 20 in sequence, for 5 minutes each frequency followed by a cough. The frequencies 10 to 17 have been shown in our Minnesota Research to be the least likely to be a useful for airway clearance.

Table for the Model 103tm

Frequencies to be used in sequence Pressure Columns
6 3 4 5 6 7 8 9 10
8 and 9 2 3 4 5 6 7 8 9
18, 19 and 20 1 2 3 4 4 5 6 7

Patients using the Model 104tm should use the Model 104tm table with frequencies 6, 8, 9, 18, 19 and 20 in sequence, for 5 minutes each frequency followed by a cough.

Table for the Model 104tm

Frequencies to be used in sequence Pressure Columns
6 5 6 7 8 9 10
8 and 9 4 5 6 7 8 9
18, 19 and 20 3 4 5 5 6 7

*This graphic is simply to help understand the information posted above. I realize that the numbers aren't the same as what Warwick says, so please follow Warwick's instruction rather than what appears on the table. The graphic is simply to help you better visualize what Warwick is talking about

Neither the SmartVest nor the ICS can have dial frequency and dial pressures settings with too great a variation for the preparation of a table for adjusting dial pressure with the dial frequency. The SmartVest System has such a high increase in vest pressure as frequencies are raised that the pressure to use for each frequency will have to be individually determined for each patient.

The ICS system jacket pressure has a large drop in vest pressure as frequencies are increased so the RespirTech Inc's guidance should be used. Using the QuickStart ramp with frequencies going up and down, 6 to 14 Hz and back to 6 Hz, wit the highest pressure that can be tolerated over the five-minute cycle is proving to be very effective. The goal is to have the patient use 100% of power.

When the patient first starts HFCC therapy I recommend rechecking the pressure columns after several weeks because strengthening of the chest muscle may make a higher pressure column a better choice. I will be very pleased to hear from patients about their experience.


The InCourage Systemtm and the Model102TM use valve systems rather than a piston equivalent pressure system to generate the HFCC compressions. Therefore we used the Model 102TM best frequencies we compared this triangle waveform versus the Model 103tm symmetric sine waveform ( Milla CE, Hansen LG, Weber A, Warwick WJ. High-frequency Chest Compression: Effect of the Third Generation Compression Waveform. Biomed Instrum Technol. 2004 Jul-Aug; 38(4):322-8). With the triangle waveform was used with frequencies 6, 7, 8, 10, 11 and 14 Hz frequencies with the highest tolerated pressure. With the symmetric sine waveform using the Model 103tm these patients used the 103 table to adjust the pressures with the frequencies 6, 8, 9, 18, 19 and 20. [U]The patients using the triangle waveform system produced an average of 22% more sputum than with the sine waveform. [/U]

I recommend that the InCourage Systemtm Quick Start program start at frequency 6 Hz and go up to 14 Hz and then back to 6 Hz over five minutes:... then to stop the pulsations for a brief time to cough. After coughing, the patient will repeat these steps five more times. Each ramp provides a virtual 3000+ frequency, in sequence, pulses from low to high and high to low during each 5-minute cycle. All the airways, regardless of dimensions, will have optimum frequencies plus harmonics and hypo-harmonics many times throughout each cycle.

The InCourage Systemtm has a unique range of pressures. Pressures 10% to 50% have been designed for babies and very small children. The use of these pressures should be considered experimental because we have not yet studied this use. At this time, I recommend that these low pressures should be used only under close medical supervision since accidental use of these pressures by toddlers and older patients show that, for users after infancy, these pressures are too low for effective airway clearance of sputum.

So far we have found that with every constant pressure setting the InCourage Systemtm jacket pressures decrease as the frequencies are increased. Each patient should test a pressure setting over a "Quick Start" ramp cycle to determine the highest pressure that the patient can tolerate over the cycle. The cycle is hardest to breath at the start and end of the cycle and easier during the middle of the cycle. My goal is to have all patients using 100% of the machine pressure. I recommend that patients 4 years and older start at 80%. For younger patients I recommend starting at 70%. No patient should use pressure below 70% for therapy although 60% may be used to accommodate small children to the feel of HFCC. I recommend working with the patient to adapting the 100% pressure..

The InCourage Systemtm and Models 103tm and 104tm and the SmartVest have collectively and successfully been used by over sixty thousands of patients for over 28 years with success, mostly without my guidelines. Never the less when one of these patients tries these recommendations I frequently hear that their system works better. These guidelines are the best guidelines I have developed.


At this time, only RespirTech has specific directions for the measurement of the patient and the adjustment of their jackets to fit with the vest circumference/chest circumference ratio is about 110%. Regardless of the HFCC system every patient's vest/jacket should fix the 110% circumference ratio by means of safety-pins or re-adjust the circumference ratio fitting to about 110% with every use. The safety pin fixation should be checked when the patient has grown, gained weight or changes the clothes that are worn during HFCC therapy. For all machines, the vest/jacket should cover all of the rib cage, from the collar bones down to the lowest ribs, with the un-inflated circumference of the vest/ chest circumference being about 110%.

If an increase of pressure alters breathing or breathing becomes uncomfortable, assume that that pressure is, at least for a while, too high for daily use. This may require daily testing of pressure, see above. Keep in mind that, as the airways become cleaner, higher-pressure pulses the patient's breathing may become less comfortable and effective.

Our basic science research has developed much of the information discussed above and confirmed earlier work. We are studying the Minnesota HFCC technology that has built or inspired the development of the Models 101tm, 102tm, 103tm, 104tm, 104tm, the SmartVest and the ICS systems. Graduate students working in the Minnesota Defense of The Lungs Project have earned three MS degrees and one PhD degree with two more PhD's expected later in 2007.

Our laboratory research ranking of estimated effectiveness, which will need to be confirmed by CF patient studies by other researchers and, is that the ICS > Model 103tm > Models 104tm and 105tmand the SmartVestTM which we assume to be equal because all three have almost identical asymmetric sine waveform output.

Your observations and questions will help us define tasks to solve and will help us improve all forms of HFCC.

My expiration date for these recommendations is March 27, 2008.


Phase II NAC Trial / Patent Application

Dr. Moss, the author of the Stanford NAC study, has filed for an NAC patent relating to an NAC kit.

This tells me that what he's seeing in his Phase II clnical trials with NAC are very promising. Take a read at what they've found regarding safety in Phase II trials....

If you haven't read Moss' NAC Phase I study, check it out on my blog.

You don't have to read the whole article but it is quite educational....

Methods for treating and monitoring inflammation and redox imbalance cystic fibrosis

The present invention relates to pharmaceutical kits and methods to treat lung inflammation and redox imbalance in human cystic fibrosis patients using pharmaceutical compositions containing N-acetylcysteine (NAC), pharmaceutically acceptable salts of N-acetylcysteine, or N-acetylcysteine derivatives.

In phase I studies, treatment with oral NAC at a dose of from about 1800 mg/day to about 3000 mg/day for a period of 4 weeks produced significant positive effects, namely, it decreased absolute numbers of white blood cells and neutrophils in the sputum and produced concomitant decreases in sputum neutrophil elastase specific activity and sputum interleukin-8 levels, suggesting an amelioration of lung inflammation in the patients.

These effects were associated with an increased total GSH level in whole blood as well increased staining for reduced GSH in blood neutrophils, both of which reflect an amelioration of the redox imbalance in the patients.

In ongoing phase II studies, oral NAC at a dose of about 2700 mg/day administered in double-blind manner for 12 weeks showed excellent safety and significantly decreased white blood cells in sputum as compared to placebo.

Patent Agent: Patent Docket Administrator Lowenstein Sandler PC - Roseland, NJ, US

Patent Inventors: Rabindra Tirouvanziam, Lenore A. Herzenberg, Leonard A. Herzenberg, Carol Conrad, Richard B. Moss

Applicaton #: 20070049641 Class: 514562000 (USPTO)

Related Patents:Drug, Bio-affecting And Body Treating Compositions, Designated Organic Active Ingredient Containing (doai), Radical -xh Acid, Or Anhydride, Acid Halide Or Salt Thereof (x Is Chalcogen) Doai, Carboxylic Acid, Percarboxylic Acid, Or Salt Thereof (e.g., Peracetic Acid, Etc.), Nitrogen Other Than As Nitro Or Nitroso Nonionically Bonded, Sulfur Nonionically Bonded
Brief Patent Description - Full Patent Description - Patent Application Claims


[0001] This application claims the benefit of priority to U.S. Provisional Application No. 60/710,807 (filed Aug. 24, 2005) entitled "Methods For Treating And Monitoring Inflammation And Redox Imbalance In Cystic Fibrosis," the entire contents of which are incorporated by reference.


[0002] The present invention relates to pharmaceutical kits and methods for treating lung inflammation and redox imbalance conditions in cystic fibrosis using pharmaceutical compositions comprising N-acetylcysteine, pharmaceutically acceptable salts of N-acetylcysteine, or pharmaceutically acceptable derivatives of N-acetylcysteine and a pharmaceutically acceptable carrier.



[0109] Based on the described phase I results, an Investigational New Drug application was submitted to the Food and Drug Administration (IND #73,410), detailing plans for a phase II trial. This application successfully passed the Food and Drug Administration review process. The phase II trial consists of a 12-wk placebo controlled portion, followed by a 12-wk open label portion, both featuring oral NAC treatment at about 2700 mg/day, administered t.i.d. As of June 2006, the 12-wk placebo-controlled portion of this phase II trial was brought to completion.

[0110] In compliance with guidelines defined in the Investigational New Drug application, safety data and efficacy data for the primary (sputum cellularity) and main secondary (functional expiratory volume in 1 second) outcome measurements were communicated to the Data and Safety Monitoring Board of the Cystic Fibrosis Foundation before unblinding the study.

[0111] 1--Enrollment and Compliance

[0112] Of the 24 CF study patients who underwent screening, 21 were found eligible for enrollment, based on evidence of ongoing lung inflammation (sputum cellularity >0.9, Log.sub.10 scale). Of these 21 patients who received NAC or placebo, 3 were withdrawn for poor compliance before the 12-wk time point. Hence, a total of 18 patients completed the 12-wk time point (% completion=85.7). Among these 18 patients, compliance at the 12-wk time point was excellent, reaching 93.0.+-.1.9% (mean.+-.SE). Compliance was not different between the NAC and placebo groups (93.3.+-.2.3 vs. 92.6=3.2, respectively, N=9 in each group, P=0.9).

[0113] 2--Safety

[0114] The first 12 weeks of this phase II trial (placebo-controlled phase) yielded excellent safety data. No NAC- or placebo-induced serious adverse events were reported. Only 1/18 patients reported adverse events that were likely to be related to treatment (patient in the NAC group), i.e., abdominal discomfort/indigestion which was treated by daily Pepcid AC.RTM.. There was no other GI complaint related to NAC (or placebo). Exacerbations of sinus and lung disease affected 5 and 4 out of 18 patients, respectively. The occurrence of exacerbations did not differ between NAC and placebo groups and was not considered to be linked to the trial. Complete blood count and blood chemistry (including liver enzymes) did not show any significant change for either NAC or placebo groups. Hence, safety of high-dose oral NAC administration over the course of 12 weeks showed even better safety results than the 4-week-treatment tested in phase I.

[0115] 3--Efficacy Data on Lung Inflammation

[0116] In this placebo-controlled phase II, results obtained in phase I were confirmed with regard to the ability of NAC to decrease sputum cellularity significantly (Table 3). There was no significant change in sputum cellularity in the placebo group. The significance of this positive effect of NAC on sputum cellularity was further increased when the 6 patients (3 in each group) with confounding treatments administered during the 12-week trial period (prednisone and tobramycin) were excluded from the analysis (Table 3). With these 6 patients excluded, the difference between NAC and placebo groups was statistically significant upon between-group analysis. Hence, the primary outcome measurement in this phase II trial yielded positive results.

[0117] 4--Efficacy Data on Lung Function

[0118] CF lung disease is characterized by the progressive decline in functional expiratory volume in 1 second (FEV1% predicted). The term "FEV1%" as used herein refers to Forced Expiratory Volume during the first second/FVC, where FVC refers to Forced (ExpiratoryVital Capacity (Liters), meaning the maximum volume of air exhaled as rapidly, forcefully and completely as possible from the point of maximum inhalation. Slowing down, stopping or reversing this decline reflect positive effects of a treatment, which generally requires long-term administration. When the 6 patients (3 in each group) with confounding treatments administered during the 12-week trial period (prednisone and tobramycin) were excluded, the NAC group, but not the placebo group, showed a significant increase in FEV.sub.1 % predicted (Table 3). This effect, however, did not reach significance in the between-group analysis, underlining the necessity for larger patient cohorts to ascertain the potential positive effect of oral NAC treatment on CF lung function. TABLE-US-00003 TABLE 3 Chosen drug effects (post-treatment vs. baseline) during the phase II trial Placebo: Between- Subjects Outcome NAC: Median Median group (N) measurement [interquartile] [interquartile] analysis All Sputum -0.22 -0.16 P = 0.825 cellularity [-0.34; +0.01] [-0.51; +0.35] (Log10) P = 0.030 P = 0.221 6 [Decrease is a -0.27 +0.06 P = 0.025 ex- positive effect] [-0.43; -0.19] [-0.19; +0.77] cluded P = 0.002 P = 0.218 All FEV1 +1.0 +2.0 P = 0.791 (% predicted) [-1.0; +6.0] [-12.0; +10.5] [Increase is a P = 0.150 P = 0.470 6 positive effect] +3.5 -3.0 P = 0.328 ex- [-0.3; +8.5] [-11.0; +7.0] cluded P = 0.037 P = 0.328

[0119] While the present invention has been described with reference to the specific embodiments thereof, it should be understood by those skilled in the art that various changes may be made and equivalents may be substituted without departing from the true spirit and scope of the Invention. In addition, many modifications may be made to adapt a particular situation, material, composition of matter, process, process step or steps, to the objective, spirit and scope of the present invention. All such modifications are intended to be within the scope of the claims appended hereto.

Phase I NAC Trial


High-dose oral N-acetylcysteine, a glutathione prodrug, modulates inflammation in cystic fibrosis.

Tirouvanziam R, Conrad CK, Bottiglieri T, Herzenberg LA, Moss RB, Herzenberg LA.

Department of Genetics, Stanford University School of Medicine, Stanford, CA 94305, USA. tirouvan@stanford.edu

Neutrophilic airway inflammation is a hallmark of cystic fibrosis (CF). As high oxidant producers, airway neutrophils contribute largely to the systemic redox imbalance seen in CF. In turn, this chronic and profound imbalance can impact circulating neutrophils before their migration into airways. Indeed, in 18 CF patients with stable disease, blood neutrophils were readily deficient in the pivotal antioxidant glutathione (P = 0.003, compared with 9 healthy controls). In a phase 1 study, this deficiency was improved (P = 0.025) by the glutathione prodrug N-acetylcysteine, given orally in high doses (0.6 to 1.0 g three times daily, for 4 weeks). This treatment was safe and markedly decreased sputum elastase activity (P = 0.006), the strongest predictor of CF pulmonary function. Consistently, neutrophil burden in CF airways was decreased upon treatment (P = 0.003), as was the number of airway neutrophils actively releasing elastase-rich granules (P = 0.005), as measured by flow cytometry. Pulmonary function measures were not improved, as expected with short-term treatment. After excluding data from subjects without baseline airway inflammation, positive treatment effects were more pronounced and included decreased sputum IL-8 levels (P = 0.032). Thus, high-dose oral N-acetylcysteine has the potential to counter the intertwined redox and inflammatory imbalances in CF.

PMID: 16537378 [PubMed - indexed for MEDLINE]

Anti-histamines even when you don't have allergies

February 20, 2007

White Blood Cells In Lung Produce Histamine Seen In Allergies

In a surprise finding, scientists have discovered that histamine, the inflammatory compound released during allergic reactions that causes runny nose, watery eyes, and wheezing, can be produced in large amounts in the lung by neutrophils, the white blood cells that are the major component of pus.

Pus, a fluid found in infected tissue, is produced as a result of inflammation.

The study in mice is the first to show that lung neutrophils can produce histamine in significant quantities, according to principal investigator George Caughey, MD, chief of pulmonary/critical care medicine at the San Francisco VA Medical Center.

"Previously it was thought that the primary sources of lung histamine, in health as well as disease, was mast cells, which are classically associated with allergy," notes Caughey, who is also a professor of medicine at the University of California, San Francisco.

Caughey says the result could mean that histamine acts as a link between airway infections and asthma and bronchitis, which are associated with allergy. "In both, we observe inflammation - swelling, blood vessel leak, and muscle contraction that narrows the airway."

The study appears in the January 2007 issue of the Journal of Experimental Medicine.

Caughey was investigating the well-known fact that upper respiratory infections often trigger acute asthma attacks. "We hypothesized that an infection in the airway would release histamine from mast cells, and that would be one of the reasons," he explains.

To test the hypothesis, Caughey and his team exposed two different populations of mice to mycoplasma, a common respiratory infection in rodents and humans. One population had a genetic abnormality that causes a total lack of mast cells; the other population was made up of normal, wild-type mice. Both populations of infected mice developed pneumonia.

"We thought the mice without mast cells would do better than the wild-type mice, because the infection wouldn't be provoking mast cells to release histamine," recalls Caughey. "In fact, they did much worse. Even though there were no mast cells, histamine levels rose up to 50 times normal."

The reason was straightforward, Caughey says. Neutrophil numbers increased in response to infection, and neutrophils in turn produced histamine. "It's a direct effect of the mycoplasma bacteria on neutrophils. They induce neutrophils to produce the enzyme that produces histamine."

Individual neutrophils produce much less histamine than individual mast cells, says Caughey, but "because pus contains millions if not billions of neutrophils, the overall amount they make is very considerable."

The neutrophil-histamine effect was similar in the wild-type mice, reports Caughey: "Histamine levels from neutrophils blew right past the histamine levels contributed by mast cells."

The wild-type mice suffered less severe infections overall because "as a number of recent studies, including ours, have shown, mast cells actually play a role in protecting against bacteria," Caughey explains. "For example, a mouse without mast cells with the equivalent of a ruptured appendix will die of the resulting infection, while a mouse with mast cells can survive."

When the infected mice without mast cells were given antihistamines, the level of histamine, and therefore the severity of the pneumonia, dropped in proportion to the amount of antihistamine given.

"This is a study in mice, so we cannot freely extrapolate the results to human beings," cautions Caughey. "Nonetheless, antihistamines may deserve more of a look as therapeutic options in lung and airway infection."

He says the study also has implications for other types of airway infection "in which there are a lot of white blood cells -cystic fibrosis, for example, which can be associated with asthma-like airway contraction."

The next steps for Caughey and his research team are to investigate "how general this result might be. Does only one type of bacteria cause the effect, or do others, also? Is it limited to rodents, or does it carry forward to humans? And if it does, is the amount of histamine produced by neutrophils enough to make a clinical difference?"


Co-authors of the study were Xiang Xu, MD, PhD, Dongji Zhang, MD, PhD, Hong Zhang, PhD, Paul J. Wolters, MD, Nigel P. Killeen, PhD, Brandon M. Sullivan, Richard M. Locksley, MD, and Clifford A. Lowell, MD, PhD, of UCSF.

The study was supported by funds from the National Institutes of Health, the Diamond Family Foundation, and an Elizabeth Nash memorial fellowship from Cystic Fibrosis Research, Inc. A part of the NIH funds was administered by the Northern California Institute for Research and Education.

NCIRE is the largest research institute associated with a VA medical center. Its mission is to improve the health and well-being of veterans and the general public by supporting a world-class biomedical research program conducted by the UCSF faculty at SFVAMC.

SFVAMC has the largest medical research program in the national VA system, with more than 200 research scientists, all of whom are faculty members at UCSF.

UCSF is a leading university that advances health worldwide by conducting advanced biomedical research, educating graduate students in the life sciences and health professions, and providing complex patient care.

Contact: Steve Tokar
University of California - San Francisco