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amcate posted:
I tried to post under the "resource" tab, but it required a URL, and youtube links don't seem to work well here.
I had been searching for videos of folks with asthma who have struggled with unhelpful responses of others while they are having a severe attack and trying to get their emergency medicines in on time. I've had issues of people who care about me choosing this momoment to quote scripture to me and confronting me about sin, I've had people not understand what is going on and yell at me for not cleaning the sink immediately, and I've also had people respond very usefully by staying calm and asking if they can help me get my medicines or if they need to call 911.
I found a group called asthmaUK and they have posted a number of patient stories, including one that talks about having to kick out her boyfriend and sister routinely whenever she has a severe attack because she can't cope with her own breathing issues and also trying to help them deal emotionally at the same time. Their channel is called "asthma UK" and it has a number of other good videos, mostly aimed at moderate persistent or severe persistent severity ranges. They seem like a good group.
Also, as a side effect, I found another video, if you search, "asthma uc inner city", and see a title that is something like "asthma in inner city children", you will find a general practitioner talking about asthma care in the USA for those at or close to the poverty line where specialists are often not available and the ignorance of general practitioners. He has a group that seeks to certify general practitioners working in those circumstances to basic asthma management.
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kellym39ca responded:
Ok, so there is the other side of things that just occurred to me again. I am a Canadian. How different is the treatments/meds etc for asthma. How different is the thinking of treatment asthma?

I am on Symbicort ... which at the moment is up to 4 times a day and at the beginning it was every 4hrs around the clock. I know at one time, Symbicort was used to be a twice a day long laster, and have read US reports that docs didnt want patients using more than that. I have been on Symbicort about 10years now and was told right from the beginning that if things are going bad to up it to 4times a day.

Just thinking out loud Will check into the Youtube stuff. I try to tune people out in those situations, focus on the individual who is dialling 911, usually they have to ask questions to me and rely back. Most of my 911 situations have happened at work, and all staff are training to deal with 911 situations so most are calm. I have been the one dialing 911 before and you cant freak out for the sake of the individual. And well not until after you get a chance to check out the firemen and emts ... Men and Uniform, Yummy!!!

And on that note!! LoL
Thanks again;
Kelly
 
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amcate replied to kellym39ca's response:
You have a great sense of humor. I guess it wouldn't be so bad to get mouth to mouth resusitation from a good looking EMT ...but they might use BMV instead. (bad BMV...bag mask ventilation).

I'm not sure what exactly you're asking regarding the difference of asthma treatment. From looking it up, Symbicort is a combination maintenance drug like the Advair 500/50 I take. I've never had an allergist tell me to take Advair more than twice a day because of concerns with asthma related deaths due to the salmeterol component. They tell me to double or at times triple the inhaled corticosteroid component by adding FloVent 220. Usually it is a mild exacerbation they are trying to reverse early on to avoid the need for prednisone.

In terms of the medical system, if a person is disabled and has no one to take care of them, they go to a nursing home. Some are good, some are inhumane. I would have no one to take care of me and could end up in an inhumane situation since I wouldn't have someone on the outside keeping tabs on the nursing home and moving me if needed. So, I avoid that by having DNR/DNI orders, but sometimes hospitals ignore it especially if the person is young. So, I try to avoid hospitals and handle it at home. I've lost consciousness from attacks, but I still feel the same because my biggest fear is not death, it's spending 40 years in an inhumane nursing home.

So, in my case it's very important I get my nebs in on time. I've not lost consciousness from an attack in 8 years as I am aggressive with the nebs early on and I detect a decline early. I've tried to educate people in my life who care about me what to do in an emergency, but some refuse the education. So, that's been my challenge and why I was searching youtube.

I've not experienced socialized medicine, so I don't know the differences. The good part of the USA system is if you have money, you can get excellent care and there are many research centers.

Otherwise, the system is fragmented, which is what the second video is addressing. When I had mild asthma, I saw a general practitioner and it was okay....only when I started having attacks in which the albuterol failed to clear it and I would pass out for 5 min at a time, his assessment was that nothing was wrong and he refused to change my meds. I self referred to an allergist since it was a emergency situation, and I've been treated for asthma for over a decade. It was only last year, at my own request, that other diseases where ruled out. Even so, I had to request the pulmonologist rule out sleep apnea, alpha 1 deficiency, etc. Differential diagnosis should have been years ago, but an asthma specialist only treats asthma. So, it's not coordinated.

I can't qualify for disability in my state even if my doctors believe I need it and even if I'm on a ventilator every month for a week for years. My state is strict in using predicted values of spirometry instead of personal best. My personal best varies a lot from the norms....meaning I won't ever be able to access that benefit.

My state is good at providing me my controller meds at $3 for each one per month. It's a long story, but being on this program ends up disqualifying me from going to National Jewish...it's because the programs are not coordinated together, and so I can only access one, but not both.

So, overall, lack of coordination between providers has been an issue. I was impressed by asthma UK as their advice line also addresses psychosocial components of the disease. In my experience in the USA, they have problems just making sure everyone has access to controller medicines such that the psychosocial aspects get ignored. This is what the second video addresses.

However, the good thing is that if you have knowledge you normally can get decent asthma care in the USA, but it falls on the patient to advocate for themselves.

Let me know if you were wanting other information instead.
 
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amcate replied to kellym39ca's response:
If you were asking about the specific medicines used: General practitioners typically are ignorant of asthma, but some are good. This is what the general practioner in the second video is also trying to address...provider ignorance of the management of asthma.

I've had good experiences with allergists. The first thing the allergist did was to stablize me with a burst of prednisone. I also had a number I could call and talk to an allergist for emergencies. After the burst, she increased the inhaled corticosteroids from FloVent 110 to FloVent 220 to see if that would hold me. When the albuterol failed again, their on call person called in CombiVent (a stronger rescue med) to a 24 hour pharmacy and gave me instructions that if it got worse, go to the ER. She then put me on Advair, adding in the long acting bronchodilator salmeterol. She told me to add in the FloVent if I I have a mild exacerbation because she was concerned with salmeterol related deaths and didn't want me to take the Advair500/50 more than twice a day. She ordered imaging of sinuses and also to rule out GERD. As a result, I was placed on antihistamines with a decongestant and an anti GERD medicine Nexium. As I kept having to use prednisone bursts, she also used mucus thinning agents like Mucinex. Her strategy was to aggressively use other medicines to try to lower my dependence on prednisone as much as possible. When the CombiVent failed, she then got me a nebulizer with DuoNeb. She issued me an asthma aciton plan within the first month, which ended up being modified as she learned more of how my asthma responded. She also did allergy testing, education on avoidance of allergens, and tried the allergy shots.

So, they start you with a middle dosage of inhaled corticosteroid only and closely monitor the response, either decreasing the dosage of inhalled corticosteroid or increasing it and adding other meds as needed. Allergists I've seen try really hard to control the asthma with the least amount of drugs possible.

About 13 years ago, when I was first diagnosed, they only used prednisone if you were on the verge of death due to concerns with the side effects. I found that if I wait that long, I have to take a lot more than if I take it at the point where I know an severe exacerbation is inevitable and increasing inhaled corticosteroids won't stop it. For example, after I get a cold, I know increasing the inhaled cortisteroids will not control the exacerbation because they never do. I found if I take 40 mg for 3 days a week after the cold, it stops the exacerbation quickly. If I wait until I crash, it takes 500 mg....and I always crash after a cold. The allergist wasn't happy I did that, though.

From what I understand, the national recommendations have changed and allergists are using prednisone much earlier in situations where a severe exacerbation is inevitable, even before it happens. So, now I can look at my allergist and say, "I told you so" . My allergist said there have been other changes in the national recommendations, but it took awhile for me to figure out an action plan that works so I was not open to changing my action plan. He was okay with that, saying my action plan was still reasonable. So, I'm unsure of what exactly the new guidelines are other than they are encouraging allergists to use prednisone earlier before a person is on the verge of death because in that way they should be able to use less prednisone to pull the person out.

Again, let me know if I've answered your question...my entry is kind of long since I'm unsure what exactly you were wanting to know about asthma management in the USA.
 
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amcate replied to kellym39ca's response:
I go away, then realize I forgot something....you may like "The Funny things is life..." video in the asthma UK channel.

I also wish to clarify that my professional training is as a licensed therapist in physical medicine and rehabilitation. So, when I've worked in ICUs, my role is to assess a person's ability to do daily activities and make recommendations to the discharge planner for follow rehabilitation and if the person is safe to go home immediately or if they need to go to a rehabilitation center before going home. Sometimes I"ve worked in rehabilitation centers with folks who've had strokes, or joint replacements, or severe COPD/asthma exacerbations to get them ready to hopefully return home. So, although I've taken anatomy and physiology courses and done cadaver labs, my training is not primarily with drugs.

But I can tell you, as I have above, my personal experiences with how allergists have instructed me as well as readings and national recommendations that I've gotten on my own regarding the USA recommendations for managing asthma.
 
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kellym39ca replied to amcate's response:
It was more or less the curiosity side of things. Docs here tend not to handout the neb machines and meds, they would rather you go to the Er. And my last 2 situations, it was safer to go there anyway.

I went back and reread my entry and I am sorry it was rather garbled. And I am not sure exactly what I was asking. However you have given me quite a bit of information which I will need to reread a couple of time to absorb it all

Alot of what you have sent sounds like things that I have done already. All but the Action plan, which I think I will do some resource on and see if maybe I can at least be ahead of the game, instead of going through what I did.

My issue at the moment is the family doctor. I have one and Thankful for it, but it is a teaching clinic concept and never get the same Doc twice. After going for so many year to the same family doctor where you build a relationship to never know who you get. It is very uncomfortable and hard. Maybe that is just me, I dont know.

Thanks for answering my questions. I do finally feel better, its been a long couple of weeks. Still not a 100% and still tire easily, but I can walk and get round better. Still one Symbicort 4 times day which I should be able to start reducing in another week or so. Have converted back to Ventilion, which I think really helped in the last 2-3days. So I am thinking I am going to stick with that.

Will reread your entries and holler if there are questions
Thank You again;
Kelly
http://ksphotographyca.blogspot.ca
 
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amcate replied to kellym39ca's response:
I'm not always good at being clear and concise in my writings...could blame it on prenisone, but alas I've been off for a week.

I never actually said, "I told you so" to my allergist...that part I was joking. We had a disagreement on when to start prednsione, and then the national guidelines changed to support my position and he had to come in and tell me that. I tried to not say, "nah, nah....I told you so" .

To be more focused on your question about Symbicort: I've never taken it, so I don't know. It looks to be a controller medicine along the same lines as Advair 500/50. Advair has two components-the long acting bronchodilator salmeterol and the inhaled corticosteroid fluticasone proprionate. When I first got asthma 13 years ago, the allergist I saw at the time was concerned with reports of salmeterol causing asthma related deaths. So, if I was having a mild exacerbation, she wanted me to increase the fluticasone propionate only. She did this by having me add Flovent 220.

When I first saw an allergist, I lived in Houston, TX. The emergency rooms were overburdened, especially with patients who could not access routine healthcare any other way. Therefore, they were having problems with emergency rooms not accurately assessing the severity of asthma attacks and sending people home who then died. So, using the ER was the last resort and the allergists would try to manage the situation themselves if possible by having a number you could call at any time and then working the person in at the office. They gave out nebulizer and some prednsione to asthmatics so they can get the medicine in quickly instead of having to go to an ER and waiting for a few hours to get the medicine due to the ER's mistakes. So, my attitude about not going to hospitals has nothing to do with that....allergists routinely give people with severe asthma a nebulizer and prednisone to use at home so they can get the medicine in faster instead of having to wait for an ambulance. Under certain circumstances, you do call an ambulance, and while you are waiting you start the nebulizer treatment.

They do the same thing with heart attacks. It used to be you had to call an ambulance and then wait until you go to the ER to use a defibribulator (the paddles they shock you with). Now, they still have you call the ambulance, but there are automatic defibrillators in the community that are used to shock the heart into a normal rhythm before the ambulance arrives. They're trying to get the treatment in quicker to increase survival rates.

My action plan does not take into account my resistance to going to the ER as my allergist has to make his recommendations based on what he thinks is safe. He believes its safer to get the nebulizer and prednisone started immediately as opposed to having to wait for the ambulance before starting it. He has me going to the ER if the nebulizer fails to get me above 60% peak flows or it fails to reverse the attack, if I have to use more than 6 nebs in a 24 hour period, if I can't talk, if I am turning blue, etc. Basically, they are trying to take the pressure off the ERs as much as possible.

I'm unsure why you say, "converted back to Ventolin", as usually they have me use Advair 500/50 together with albuterol rescue medicines. So, this may also be a difference.

I agree with you, it's better to have the same doctor over time especiall if you have bad asthma.

Not sure you were wanting more to read, but was hoping to be more focused on your specifc questions.
 
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kellym39ca replied to amcate's response:
Ok, well that answers one of the questions I was having regarding predinose ... it does garble the brain!!! I thought I was losing it. Thank you. I have notice within the last day or so that has become better

Yes, Symbicort is a controller/long laster. Majority of the time it works great. but I find once you are in an attack (sever attack, I should say), I cant get anything in unless it is a nebulizer with the mask.

This time around ambulance was there within 5mins. And no waiting at the ER. Not sure that is because I was so bad or the new system they are working. Thought it was rather cool...all networked. Calgary also has a new hospital that just opened I think that helps as well.

Converted back to Ventolin: I have been on Bricanyl which is a powdered inhaler. I was having difficulty using the Mist Ventolin even with a chamber. But during this time, the hospital put me back on it to see if it would help. And when I went back to the doc, he suggested to continue using it see if it wouldnt be better. and I think it has.

Kelly
 
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amcate replied to kellym39ca's response:
Yes, prednisone definitely can garble the brain. Then again, I find it a good excuse at times (don't blame me, blame the prednisone) . Truth is, I'm a horrible writer and always have been.

Allergists I've seen say to continue with the controller Advair 500/50 and then use albuterol/ipratropium bromide with the nebulizer for a severe attack as well as adding in prednisone. If the albuterol/ipratropium bromide with the meter dose inhaler fails, then I use the nebulizer.

I did wish to clarify the ERs in Houston when the allergist was first setting me up on my daily medicines and an action plan are actually very good. They had some of the best trauma care in the nation. The main issue, as I mentioned above, that I've heard about the ERs is that asthamatics who can't get care any other way use the ERs as a regular doctor's appointment. So, ER folks are just human beings and sometimes make mistakes when determining the situation...but it is also very true in American medicine (in my experience) that they emphasize getting emergency medicines in early and not waiting...the reason for automatic external defibrillators in the community....also as I already mentioned. Looking at the Allergy and Asthma Foundation of America videos, it appears there is a lot of talk about this problem (people not being able to access follow up care and using the ER as a regular doctor's appointment) going on.

You are teaching me a lot about asthma medicines. I've not heard of Bricanyl, but it looks like a rescue drug of some sort.
I guess that you were using that at home instead of the nebulizer I use since the meter dose inhaler was not working.

Also, before I left Houston, TX I saw a person who is board certified in allergy, asthma, and immunology and also board certified in emergency medicine who was part of the same group as the first allergist I saw. He's the one that told me to use one neb after another if the first one didn't work well. I asked him about the risk of cardiac attack doing that. He told me when he worked in the ER he would see asthmatics be dead on arrival due to not being aggressive enough. He was using hypothetical numbers, but said, "if you use one neb after another, you may have a 15% chance of a heart attack, but if you don't you have a 90% chance of dying from an uncontrollable asthma attack. All risk is relative, so I'm telling you in an emergency to go with the 15% chance of dying. Just get the asthma controlled." So, that's also part of the rationale of the allergists who set me up with the neb.


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