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home spirometry?
- Thread starter erock77
- Start date
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Rebecca1280
Guest
Spiro PD is a personal or home spirometer and has all the same capabilities as an office spirometer. It's very user friendly and allows you to upload all of the data to your computer. As per the website-www.spiropd.com, you can call 888-PMD-4YOU for more information and to see if it is being covered by your insurance company.
Eric,
Here is a link to our new online store. http://www.medrise.com/spirometer.html where you can find more information about home spirometers. We also offer FREE Ground Shipping and if you use this coupon: CFTOOLS102012
you will get an additional 15% Off.
If you have any question let me know.
Thanks,
Ennio
Here is a link to our new online store. http://www.medrise.com/spirometer.html where you can find more information about home spirometers. We also offer FREE Ground Shipping and if you use this coupon: CFTOOLS102012
you will get an additional 15% Off.
If you have any question let me know.
Thanks,
Ennio
R
RytheStunner
Guest
There are currently clinical trials in the works by another startup company that will ultimately result in the availability of a home spirometry package that is covered by insurance.
We have a Piko 1 that cost around $69.00 and it does good FEV1 and I think it gives FEF too, but I never have paid attention to that number. We checked it with our clinic and it matches theirs perfectly and is small and easy to use. It let me know when Abby had walking pneumonia. You can buy a dock for $100 that will track your PFT's for you but I never have gotten that. It does not keep them on the machine itself.
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DmT145
Guest
Why are the spirometers on medrise so expensive? What is the point of having a spirometer that has blue tooth or one that can store thousands of tests? I don't imagine many people have an extra $1700 laying around.
Why are the spirometers on medrise so expensive? What is the point of having a spirometer that has blue tooth or one that can store thousands of tests? I don't imagine many people have an extra $1700 laying around.
Hi DmT145, Welcome! I've never read a post by you. Glad to have you here and happy you are jumping right in! I've been a member since 2006. I am 34 f with cf. Life got a little more complicated when my son was also diagnosed in 2007. This site has been a wealth of information for me seeking best practices and the friendships that have blossomed have been very nice too! I'm glad you're here!
The store will hopefully eventually have all products that are used by the cf market. For now, we start with products that someone is intrigued by. Jeanne hopes the community will provide feedback on the products in the form of reviews and videos. Check out tripadvisor.com for what it's modeled after.
We tend to be a community with high standards. I think the hope is that many insurances may pay more than we think on a spirometer and other devices. Why not shoot for the stars? My background is product design and development so I tend to appreciate and purchase devices that are well designed. That said, I understand 100% not wanting to pay $1700 for a device especially one that is not part of our requirements to stay alive (mucus clearance, nebulizers, etc.). If you suggest a product, we could certainly look into whether or not they want to sell through the site. If you are willing to purchase and review I wouldn't be surprised if the product may be moved up the list to follow up on.
I'll suggest to the admins to consider making a form the community can use to submit product suggestions.
Thanks and again welcome!
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DmT145
Guest
Loulou, thanks for your reply. I am on the clinical side of things as a grad student. In our lab we do some pulmonary stuff, mostly dealing with airway surface liquid. In some of our studies we need to be careful of bronchospasm and use a handheld spirometer similar to what you have. I'm not sure the brand, but if I recall they are around $500. Certainly less than $1700.
I'm just wondering why you would need all the bells and whistles to do simple spirometry. Maybe your docs are different, but from a clinical standpoint, it seems like overkill. I'm also wondering who in this case throws the flag. Do you keep a diary and then contact your pulmonologist if you start to see a decline? I would imagine that your doc would want to see you and do spirometry in the lab, right? So it's a bit redundant to be spending that kind of money on your own personal spirometer when you will still have to go to a lab to have a standard spirometry test done, or am I missing something?
I'm just wondering why you would need all the bells and whistles to do simple spirometry. Maybe your docs are different, but from a clinical standpoint, it seems like overkill. I'm also wondering who in this case throws the flag. Do you keep a diary and then contact your pulmonologist if you start to see a decline? I would imagine that your doc would want to see you and do spirometry in the lab, right? So it's a bit redundant to be spending that kind of money on your own personal spirometer when you will still have to go to a lab to have a standard spirometry test done, or am I missing something?
Loulou, thanks for your reply. I am on the clinical side of things as a grad student. In our lab we do some pulmonary stuff, mostly dealing with airway surface liquid. In some of our studies we need to be careful of bronchospasm and use a handheld spirometer similar to what you have. I'm not sure the brand, but if I recall they are around $500. Certainly less than $1700.
I'm just wondering why you would need all the bells and whistles to do simple spirometry. Maybe your docs are different, but from a clinical standpoint, it seems like overkill. I'm also wondering who in this case throws the flag. Do you keep a diary and then contact your pulmonologist if you start to see a decline? I would imagine that your doc would want to see you and do spirometry in the lab, right? So it's a bit redundant to be spending that kind of money on your own personal spirometer when you will still have to go to a lab to have a standard spirometry test done, or am I missing something?
Cool! So do you have cf and your doing clinical research or are you without cf? Thanks for working on advancing care. I think you are correct regarding the SpiroDoc. It probably provides way more than what I need. To be clear, my doctor never asked me to get a home spirometer though did support my decision to get one as it would be an additional tool in his/my arsenal to attack my cf. Originally I wanted a pulse ox to monitor what my O2 was doing during exercise. Not just during a 6 min test in the hospital but day in the life sort of exercise. For example, I get VERY WINDED when I run. Should I push through this or do I need supplemental oxygen? You can think of it as the next logical step after heart rate monitoring which has become mainstream but is very much a necessity for people with heart/lung issues to monitor. I think 02 is the same but will never stand a chance to get an rx for it until I have numbers to prove I need it, no? Even with all this thought I never asked for home pulse ox. A lot of people buy these types of things out right but I wanted to wait until I had the time to investigate insurance coverage. The list of "to do's" regarding my health get prioritized and re-prioritized. This has never been top of the list! Then on this site, myself and other leaders in the community saw a trend of people (who were adherent may I add) having lower lung function than expected at their quarterly cf chkup. We ran a survey and found that there was a DEFINITE need for home spirometry. Not just a want but a need as we feel it will lead to an earlier detection on exacerbations. What this could mean long term for life expectancy could be huge.
Okay back to the spirometry. Regarding who throws the flag. I think you have an excellent point and I hope to be involved in the standardization of care with regards to use of home spirometry. That being said, every case is different so it won't be easy to make a 'one size fits all' approach. I am at a very early understanding of all this but for right now I would say that each patient who gets a home spirometer should make a plan of action with their doctor with regards to 1) roughly how often they should be using it at the minimum and 2) when to give a report from the device to the doctor. I think that it is impairative that the device make a classic PFT report like one would get if they did a PFT in the hospital or clinic. This way the doc can compare all the numbers he has on the patient through the care center directly with the home spiro. At the least, the patient should bring the reports printed with them when they come to clinic. Think of it like a diabetic tracking their sugars. From there perhaps they patient and doctor can see patterns and make a plan for earlier intervention or perhaps detect changes that were helpful in the patients care plan based on the results show in the report. The devices raw number (ie. not percentages) should be quite close as long as they are all calibrated. All the patient, need do which is what I did last week, is bring the device in and use it right after they do their pfts in the lab. See that the numbers are comparable.
Bottom line the cf doctors put a whole lot of stock in the pfts which if you think about how variable they can be from one day or week to the next it's sort of crazy how much importance they are given. They are THAT good that is why. And we should have results on a more regular basis. More data points = more accurate reports for analysis.
How I came to get the device is unusual because I am working in the field of connecting the e-patient, specifically helping the healthcare industry better interface with social health communities. If you saw my video and read Jeanne's article that went out with it you'll learn more on that.
To answer your question about how I know when and what to do requires me to explain a bit more about my cf. Everyone is a bit different. In terms of my care. I carry along and go for my quarterly appointments. If I am lower than my baseline at the appt, we intervene my normal care plan. We look at other measures than just pfts which I've worked to define as it is difficult to see the wood from the trees regarding an exacerbation sometimes. With more benchmarks my understanding of my own health has increased. Then I touch base with the doctor if I don't see an improvement. If the intervention is IVs I go in for a follow up, but if it's just orals he takes my word on it that I'm up to snuff to carry on to my next appt. Of course, I can always make another appt sooner. So NO in answer to your last question if it's just redundent to be doing pfts at home because the doctor will require the patient to come in. I don't think doctors very often have a patient in to merely get pfts. If there is shortness of breath or other restrictions then my guess is the doctor actually wants the patient to come in so he can listen to the lungs.
This is what happens when I am in a stable state. It's a slow decline in cf so this I would reckon is "normal."
Now, what is not as normal is what happened 4 years ago and only just recently in the last year seems to have stopped. I needed IVs every 8-12 weeks. We would start IVs based on my symptoms over the phone. I have a port and am hyper vigilent about germs. After a year I learned to access the thing myself because I preferred that over some nurse coming into my home. He prescribes and gets home health care to deliver the drugs in bags that dont require gravity feed. I go to a lab to get levels checked and talk with him a few times the first week to make sure I'm headed in the right direction. If I weren't I wouldn't hesitate to go in. But what is important to know...is that with cf when we are sick we are so susceptible to germs that my doctor would rather I not come in...even for a pft. So we start IVs with NO RECENT PFT RESULTS. Now that I have home spiro we will have that knowledge to add to my description of my symptoms. So I do two weeks and if I think I'm all better or just about I go in for a clinic appt incl. PFT to see if I am back to baseline. If I am not, we make a plan about what to do. I have heard of others refer to this care plan as well as the following: "I don't go in when I'm sick. We treat the exacerbation and then check to see if I'm all better."
Many of us have ports but not all. If you req IVs and don't have a port you need to get a PICC which has to be done in the hospital. My doctor encouraged me to get a port when I started to need IVs more often because he didn't like me having to get the PICC placed. We must remember that each time we get an intervention of any type, especially in the hospital, it is not without risk. For this reason, I am PRO home spirometry - at any level of device and disease - I think it is going to be a really good thing for my care.
My number 1 goal is to get back stability. I want off the rollercoaster ride I've been on since 2008.
Welcome! Great Question and great reply! I would like to "chime in " here. If you don't have CF then you may not know that CFers are in danger of cross infecting each other. This is probably one of the main reasons I have believe so strongly in sponsoring this social health community since 1996!
Now with the development of home spirometry, CF patients have the opportunity to take even more charge of their self care. I don't know the studies or even if there are studies of patients using the same spirometer in clinics, but it would be common sense to me, to question a test that uses the same product on many patients with CF.
We are working with several companies that make spirometers and are interested in customizing them to the CF patient.
Medrise is about health tools...and they are very exciting. The spirodoc is a mini laboratory, allowing for data transfer and an e diary for home care symptom control.
It is true that some products on the Medrise site are simpler and cheaper and some will have more capabilities, and we are hoping to be the place where patients can do just what is happening here, discuss and decide, which are the right tools for them.
Thanks for your interest and stay tuned!
Jeanne
Now with the development of home spirometry, CF patients have the opportunity to take even more charge of their self care. I don't know the studies or even if there are studies of patients using the same spirometer in clinics, but it would be common sense to me, to question a test that uses the same product on many patients with CF.
We are working with several companies that make spirometers and are interested in customizing them to the CF patient.
Medrise is about health tools...and they are very exciting. The spirodoc is a mini laboratory, allowing for data transfer and an e diary for home care symptom control.
It is true that some products on the Medrise site are simpler and cheaper and some will have more capabilities, and we are hoping to be the place where patients can do just what is happening here, discuss and decide, which are the right tools for them.
Thanks for your interest and stay tuned!
Jeanne
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DmT145
Guest
Thanks for answering some of my questions. I do not have CF, but I am somewhat familiar with it from lectures and from reading online. From a clinical perspective, I think this will be a tough sell without any data. A few posts back I saw someone mentioned a clinical trial. I'm sure your community has strong opinions on what is best, but science requires quite a lot of proof before an idea is accepted as best practice. I think the idea of a clinical trial is the best way to go in this case.
M
mgl
Guest
Just bought a SpiroPD. Seems pretty good. Works fine with a Mac which the Piko won't work with.