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.
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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?
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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....
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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.
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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.....
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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.
:)
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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!
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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.
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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.
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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.
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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.
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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.
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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....
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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.
FIGHT ON.
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