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bookworm
Guest
You're welcome. I first read about the Electro Flo on this forum, so the credit goes to those who share on this forum.
Other Airway Clearance Techniques besides the Vest or actual CPT (Clapping)
- Thread starter believingjesus
- Start date
believingjesus
Banned
I did call about the Electro Flo 5000. I was told many people with CF do two forms of treatments - usually the Vest and another form - I was told the Electro Flo 5000 is $5,500.00. She said if insurance does not cover it then they charge the patient $2,750 and you can purchase one on a "lease to own" agreement. They would charge $100 a month till it was paid for with no interest and then transfer ownership to the patient. It is 12 inches by 12 inches and 5 inches across and light-weight. I am going to find out from my son what device he thinks he would prefer between this, the pari-pep device, or possibly the Vibralung (if someone can convince me the inside components of it can be sterilized). I appreciate everyone's help immensely! I never would have known about any of these options. Thank you!
My daughter has been using the pari-pep for about a year. It is by far the smallest and simplest of these devices. She even uses it with pulmozyme as well as albuterol and hyper sal because the medicine does not collect in the device. She's young and it doesn't cause her to cough so the benefit of the pep pushing the meds deeper in her lungs has been beneficial. After I read about the Aerobika I just had to have her try it as well. Its bigger but simple to use and sterilize. She only uses albuterol and hyper sal with the aeorobika. We switch it up and use the pari-pep with morning and evening treatments and the aerobika fir afternoon treatments. I see alot of your posts and from one mom to another, what has really helped me stay current on all things cf, is to put cystic fibrosis as a google alert. Then every time cf is mentioned in a publication, clinical trial, press release, etc. Google alerts you via your email and you can read about it! The majority of what I do for my girl has been through my own research. Its a great way to be in the "know". Lots of the time we're a ahead of the clinic.
Good luck!
Good luck!
believingjesus
Banned
Thank you Ponytails! I appreciate you letting me know. How is the Aerobika sterilized? Can it be disassembled and boiled or how do you clean it? I forgot about the Aerobika and it definitely is much cheaper which so helps. I'm glad it is working for your daughter. Does she have a Vest system too? The respiratory therapist only likes the Vest.
believingjesus
Banned
Jaimers - I appreciate that you would look into that for me. I forget things all the time so I completely understand. I am going to present a few options to my son but since the Acapella has that little metal piece I think I will concentrate on the Aerobika over the Acapella just because sometimes he will have to soak in alcohol and I know that may not be good for that piece. I really appreciate your help giving me all that information though as it gave me choices I didn't even know were out there. Thank you very much!
nmw: I think the Aerobika looks like it works pretty well for a much cheaper price than the Electro Flo and the Vibralung and seems to be effective and can be sterilized pretty well. I am going to see if my son can ask his RT about this and ask about the other two also and see if they can give a prescription for the Aerobika since it is so cheap anyways. I love that it is small and can be disassembled and works so well. If it doesn't work like he wants it to then we can look into the more expensive choices. Hate to spend money we don't have! I liked the Pari-Pep too but he has 10 pari nebs right now and it looks like it takes a special one to hook up to that so that turns out to be a lot more money. Thank you very much for letting me know!
nmw: I think the Aerobika looks like it works pretty well for a much cheaper price than the Electro Flo and the Vibralung and seems to be effective and can be sterilized pretty well. I am going to see if my son can ask his RT about this and ask about the other two also and see if they can give a prescription for the Aerobika since it is so cheap anyways. I love that it is small and can be disassembled and works so well. If it doesn't work like he wants it to then we can look into the more expensive choices. Hate to spend money we don't have! I liked the Pari-Pep too but he has 10 pari nebs right now and it looks like it takes a special one to hook up to that so that turns out to be a lot more money. Thank you very much for letting me know!
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believingjesus
Banned
I narrowed down the choices to really good ones and my son got back from his trip earlier this afternoon and told me there was a message on his phone from the respiratory therapist that said she really did not want him to do any thing other than the Vest. I swear. The nurse already told me that the RT only wanted that and that they would be calling my son to discuss it. I guess that is their discussion. I honestly don't know how I can get an Aerobika now without a prescription. Nothing is easy! Sorry for the negativity.
believingjesus
Banned
Does anyone else have this problem at their clinic? I honestly did not know she had that much power until the nurse told me that. I am not too happy. I don't understand especially when the Vest barely makes my son cough up anything.
@beliveing re:intransigent RT: My clinic is attached to a teaching university, and so I get lots of turn over in the nutritionist/social work/pharmacy/nursing specialties. Sometimes these 'kids' need a little bit of discussion on the fact that I'm an adult, I've got 30+ years experience with CF, and I've got my life to live outside of the hospital. Not sure if that would go over so well with more experienced/more stubborn person.
Tell them you want to use it at the same time as the vest. My daughter uses the pep or aerobika along with the vest for each treatment. Tell them u want the best airway clearance possible. Then when he's taking a trip he can just take the aerobika. They don't even use the vest in europe so it certainly isn't the ONLY way. I do like the vest though and both together is awesome!
believingjesus
Banned
Ponytails - Actually I really do want my son to have another device even for when he is home. The Vest does not make him cough up anything. Every time I say anything they keep telling me that my son is healthy and I should accept that and not come up with "what ifs". I understand that I worry and need to see the positive side and I thank God all the time for keeping my son healthy and I pray for others I care about who are not as fortunate as he is right now. I don't understand why she would insist so much that my son just have the Vest. He is only on our insurance till the end of the year and I really want to get him something while I know what to expect. I am going to call today. She sort of scares me so I know with my son being so shy that he would have trouble. He never wants to make trouble with anyone and is everything I wish I could be.
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Believing, not coughing anything up does not always indicate the Vest isn't working. When I am healthy, I am bone dry. No treatment makes me cough anything up. I can do 10% hypertonic, and still cough nothing up.
Additionally, because your son is an adult, his clinic may not be able to speak with you about this matter. I know my parents cannot get any information from my clinic regarding my care and health.
Additionally, because your son is an adult, his clinic may not be able to speak with you about this matter. I know my parents cannot get any information from my clinic regarding my care and health.
believingjesus
Banned
Thank you nmw - Yes I know that he may not have anything to cough up but being 25 yrs. old with DDF508 I would think there would have to be something. And I do also understand that the clinic may not be able to give me any information but my son has given them permission for me to talk to them about his care and they acknowledge that but I guess they are trying to get him to handle it all. I do understand that too but it is so much and he works full-time and has to take care of himself on top of all that and has his own place and he absolutely does not have the time. He does not have a wife to help him with anything and I am his Mom and am more than willing to assist him in any way I am able to. I also realize I may be extreme but my son has told me many times how he appreciates all I do for him and I really do feel like I am in this with him as I can't make it without him. I appreciate you saying that though as maybe he just doesn't have anything to cough up but I doubt it.
believingjesus
Banned
I called but nobody answered so I left a message. My son loves this clinic and so do I so I don't want to make any trouble for sure. We also like the respiratory therapist even though she is stubborn. I know she is only looking out for my son as I only mentioned traveling with it but after talking to the representative for the Electro Flo and her telling me most people use 2 forms of airway clearance, I really just want one in addition even if he has to take both traveling. My son got back yesterday and had to leave early this morning so won't be back till late tonight. I asked that they call him tomorrow again. I hope we can get another one while I know what coverage he has.
Believing, I am also DDF508, like your son. I turn 25 in just a couple months. It really is entirely possible that he doesn't have anything to cough up. This doesn't mean you shouldn't try to get another form of airway clearance, but I'm just saying that he may not have anything to cough up at this point, and pushing the lungs too hard can cause problems.
Melody Chaney
New member
i have posted under "Airway Clearance techniques" a mechanical handheld percusser i'm giving away free. it's supposed to be pediatric, and is supposedly not as effective as the vest, but it is useful for traveling and can be used on adults as well. It's a lot smaller and lighter than the vest and still vibrates the lungs. Also, your son can try exercising for his therapy in order to keep from having to pack extra therapy equipment.
JustaCFmom
New member
I just wanted to share that here in Israel the treatment is with the "acapella" and CPT. Really the vest is mostly an American treatment approach. I would definitely put together your research & fight for having a user friendly travel system. The Canadians just came out with a big research paper last year proving the effectiveness of the PEP approach. I just found this discussion you may appreciate http://cysticlife.org/QuestionsProfile.php?id=6901 and this http://www.cfmedicine.com/history/topics/physiotherapy.htm "2013 McIlwaine MP. Alarie N. Davidson GF. Lands LC. Ratjen F. Milner R. Owen B. Agnew JL. Long-term multicentre randomised controlled study of high frequency chest wall oscillation versus positive expiratory pressure mask in cystic fibrosis. Thorax 2013; 68:746-751.[PubMed]Positive expiratory pressure (PEP) is the most commonly used method of airway clearance (AC) in Canada for patients with cystic fibrosis (CF) whereas, in some countries, high frequency chest wall oscillation (HFCWO) is the preferred form of airway clearance. There have been no long-term studies comparing the efficacy of HFCWO and PEP in the CF population. This study was to determine the long-term efficacy of HFCWO compared with PEP mask therapy in the treatment of CF as measured by the number of pulmonary exacerbations (PEs). A randomised controlled study was performed in 12 CF centres in Canada. After a 2-month washout period, subjects were randomised to perform either HFCWO or PEP mask therapy for 1 year.
RESULTS: 107 subjects were enrolled in the study; 51 were randomised to PEP and 56 to HFCWO. There were 19 dropouts within the study period, of which 16 occurred prior to or at the time of randomisation. There were significant differences between the groups in the mean number of PEs (1.14 for PEP vs 2.0 for HFCWO) and time to first PE (220 days for PEP vs 115 days for HFCWO, p=0.02). There was no significant difference in lung function, health-related quality of life scores or patient satisfaction scores between the two groups. PEP mask therapy required a shorter treatment time.
The results of this study favour PEP and do not support the use of HFCWO as the primary form of AC in patients with CF. Apparently the previous study on PEP from Vancouver by Maggie McIlwaine and her colleagues had a major influence on the introduction of the PEP mask into N. America (McIlwaine PM et al. J Pediatr 2001; 138:845-850. " [PubMed] http://www.ncbi.nlm.nih.gov/pubmed/11391327?dopt=AbstractPlus).
I just want to add that the Canadians have one of the best median survival rates in the world. They were the first ones to show how important a good BMI is to long term survival & to push a high calorie diet (vs. the low fat diet that was prevalent then)
Good luck!!!
believingjesus
Banned
I just wanted to tell everyone "Thank You" for your advice on different airway clearance techniques. I found out yesterday from a lady at our local pharmacy that had been looking into the devices I told her about that we don't need a prescription for the Aerobika. I still want something that is going to be powerful enough for my son when he travels and the Aerobika I was just going to get as an "extra" to the vest. I have asked my son to really talk to his team at his clinic the next time he goes for appt. about the Vibralung and also the Electro Flo 5000. That said, I STILL have not heard back from MMCPECK about the cleaning of the Vibralung even though he promised several weeks ago to address that. Before spending several thousands of dollars that we don't have for either one of those devices I would really like to know. But I wanted to say thank you to everyone. Thank you also Melody Chaney for offering your device but since it is a pediatric one and not really what I was looking for him for traveling we will still try to get one of these other two. Thank you though everyone.
Hi Believing,
I tried the Electro flo 5000 probably about about a year and a half ago. Jane had one on hand that she let me take home for the 3 months between clinic visits to see if I liked it. So I'm guessing she still has it for people to try out! I personally did not like it at all, but that's irrelevant.
Also, the AerobiKa and Aeroelipse neb kit can be purchased here, with no Rx necessary as you mentioned:http://www.aerobika-therapy.com/order-today/
I ordered the Aerobika and am just waiting for it to arrive... We shall see!!
Take Care,
Autumn
PS. "Stubborn' is a good word for Jane.