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amcate posted:
I'm requesting that those who are religious pray for me.

I came out of my last exacerbation a few months ago. My throat has been sore with some trouble taking a deep breath, but peak flows were okay. I was hoping it was a cold since it only involves taking a short burst of pred after the cold clears to prevent an exacerbation in my case.

However, tonight the coughing got a lot worse and very painful and a lot of clear frothy mucus. My peak flow was 60% of personal best. I don't go to hospitals as I don't wish to be intubated or resusitated against my wishes and risk possible long term effects. I have seen people in nursing homes who suffered severe anoxic brain damage due to an asthma attack as part of my job. Having an asthma attack is rather humility provoking, and I thought of the person who laughed yesterday when I said I couldn't talk loud due to the asthma and thought, "I bet this would look real funny if you could see me now." I realize he's just a nice kid who probably didn't know what else to say. I also thought of my medical POA, who asked me how I was yesterday and I told him the asthma was worse. He said, "wow, you've only been stable for a few months. It just comes back and comes back and comes back with you." Things were silent, and I said, "well, what can you do? It's asthma and I've done all I can". ...and yes, controllers are maxed out. I keep telling myself no reason to get upset since there's not much else I can do and not to let it get to me, to just let it pass and then go on with life.

Anyway, I took one neb treatment and some pred as I'm lucky that my asthma MD will give me home neb prescriptions and a stash of pred since I work in healhcare (I'm not a physician, though). They tell me I know what I'm doing and their office has asked me many questions regarding what I do with my meds and my knowledge of asthma. They also have the paperwork for DNI/DNR. My breathing was improved after the first neb treatment, but still having some problems. The peak flow was 70% 20 minutes after first neb treatment. So, I'm now doing a second neb treatment. My asthma MD has recommended in such situations that I go ahead and piggy back neb treatments one after another in situations like this due to history of severe attacks that don't respond to rescue meds and periods of lose of consciousness.

Not much anyone here can do, I know what to do and have an asthma action plan including when my asthma MD recommendations I go to the hospital. (He still has to make the recommendation regardless of whether I follow it, and there is a point in the plan where he strongly recommends it). The pred is already in my system; it will just take few hours to work. I'm just asking for your prayers both for my speedy recovery and also that I learn from this and become more spiritually mature and a more compassionate and loving person as a result. My apologies for typos, the shaking makes it hard to type. Thank you all for your support. I pray that a cure is found. Thanks.
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cwille responded:
u have my prayers because i know exactly what you are going through as i type this i am doing an nebulizer treatment.

god bless

cwille
 
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amcate replied to cwille's response:
Thank you for your support, cwille. I feel kind of strange complaining to you as you say you're in and out of the hospital about every month or so. I am in situations where I should go to the emergency room about once a year. As stated above, though, I usually stay at home and risk dying at home against medical advice. My asthma doc has a very aggressive action plan.

I went on pred 80 mg for two days, and things got better. Then, I went to 40 mg and used a neb treatment before going to work. While at work, things got worse and I can't recall my exact peak flows, but they were something like 55% without rescue meds, but recovered to 65% with rescue inhalers and nebs. The nurses asked if I needed medicine, and a coworker offered to take my patients for the day. My allergist told me that if I'm above 60% and stable on rescue meds, it was not an immediate 911 call and to adjust other meds. Since I was stable, I continued, and all was fine. When I got home, I couldn't figure out why I had crashed after taking so much pred and why I was continuing to cough uncontrollably and having such difficulty cleairng secretions and talking in sentences longer than 5 or 6 words. I looked at what I was coughing up, and saw large green and yellow blobs, so I started the prescription of Levaquin that my allergist gives me ahead of time. Medically speaking, I should have gone to the ER or urgent care to get further instructions as my allergist doesn't want me to combine prednisone and Levaquin due to risks of tendon ruptures....but I just took my chances because I don't want to die in a hospital. I want to die at home.

A day or so later, my neb wasn't working as well as it should given the amounts of pred I was on. I looked, and found it had a crack in it and medicine was expired. I plan ahead, so already had medicine that is not expired and a brand new nebulizer kit. I was stable at around 60%, so took the time to do a mild disinfection. I called my medical POA to keep him informed in case I somehow end up in the hospital and there is a resusitation effort leaving me in a persistant vegetative state. Unfortunately, he thought that was the time to lecture me about unresolved sin in my life. Not that what he was saying was wrong, but it's not right to do that to someone who is in a serious medical situation because I had to focus on my peak flows and redo a neb if they decreased. I try to act with Christian love and understanding, but those situations really test me and I shouldn't have to worry about others and their lack of understanding of my medical situation at that time. I got off the phone with him, continued to monitor the peak flow, and redid the neb once the new neb kit was disinfected. I emailed him telling him his actions were dangerous and that he had put my life at risk because I needed to stay calm and focus on my medical issues. I don't wish to be a jerk and alienate my support system, but it's hard in those situations to know how to respond to interpersonal issues because all your effort is focused on breathing. He said, "I don't know why you can't understand what I'm saying about how an addict thinks...I'm trying to get you to understand." When I emailed him, I said, "I can't imagine why a person in respiratory distress and who isn't getting a full response from their nebulizer, they don't know why, and they are 60% with nebs and 55% without...I can't imagine why they can't understand everything." I wish to have understanding friends around when I die.

Anyway, not much you can do...but your support and understanding means a lot to me. I'm done with Levaquin, which has helped a lot. I'm off pred, and at 75% of peak flows with mild symptoms. The ICS are doubled, and I'm monitoring to be sure another crash doesn't happen as pred wears off.
 
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amcate replied to cwille's response:
I neglected to mention in my last post above that I've not been to work since that day except yesterday for CPR training. My allergist is very conservative with antibiotics and discourages me from using them routinely. His main concern is resistant organisms. I have a list of sysmptoms that indicate possible infection, and in the absence of such symptoms he says to not use antibiotics. When I first started having trouble, everything I was coughing up was clear fluid because I'm supposed to check that before using pred. So, I don't know what happened. All I know is when I came home from work and couldn't figure out why I crashed after so much pred, I looked again at what I was coughing up....and there it was.

It's hard sometimes to know what is triggering asthma. I respond also to air pollution, humidity changes, allergens, cigarette smoke, laughing, crying, cold air, dry air, on and on....when it first started acting up, everyone around where I live told me their allergies were acting up. Even the last day I was at work, the technician was blowing her nose like crazy and saying her allergies were killing her. My boss was the same way the day before. A friend told me she and her husband were down for the count due to sinus allergies. I've not had an allergy test for over 10 years since I don't tolerate the shots and the asthma goes crazy with them, but I just figured I must have developed a new allergy since moving here and that's what was causing it.

Anyway, thanks again for your support and it does mean a lot. With any luck, I"ll stay stable until the summer fires come around in a few months.
 
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cwille replied to amcate's response:
Dont ever feel bad or strange about complaining , i figure that is what the board is for, and believe it or not i look to see what other people are going through to see if there is anything that can help me. I am now off prednisone for about 2 months and i am now on hydrocortisone pills, my body started not to like the prednisone to much, i wasn't producing hydrocortisole, or something like that , anyway prednisone and other steroids where tearing me up i ended up with cataracts in both eyes and tremors plus other things, i am now out of work , i ended up with disability mostly because i was never there, as u say i was in the hospital most of the time, thankfully i have only been in once this year, that was in january, i was a mailman so i was outside all the time , now i stay in most of the day doing my househusband chores, lol and i haven't been in the hospital since , now i have had attacks, but not as bad, and my doctor is very good, i can call him anytime and they get me in the same day and if it is a real bad attack he gave me his cell number , i am very blessed to have a real good doctor, who also isn't affraid to try new and old treatments to get me better. i am like you in the allergie shot department, i had a reaction to the shots , if it is not one thing its another, but , i have tried to keep up good spirits, i know god has something planned for me , i just wish he would let me know, also as i tell my son, there is always somebody who has is worse than you, it doesn't always work but it does , i really am praying for you and all my brother and sisters in asthma dome, lol it's not easy , but if life where easy, than i guess it wouldn't be any fun lol.

god bless
cwille
 
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sgbl88 responded:
Hi amcate,

Sorry you are going through it again.

I totally understand you allergist's point of view. I know I would rather not take antibiotics, but I also have precedent that I don't get over infections without them. I prefer to be treated by my PCP or infections because he will have a CBC run routinely and not just throw antibiotics at something. However, he won't treat my lungs anymore and asks me what antibiotic I think is best.

As cwilie said, this is the one place we can come and share our frustrations with people who can relate. Not only are we to help each other as we strive for a more healthy life, but also help each other with the mental battles as well.

Take care and you have my prayers as well.

Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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amcate replied to cwille's response:
Thanks for your support. Also wanted to mention that my medical POA really is a good person overall and I believe does care about me. He had asthma as a kid, but that was a number of years ago and treatments have changed. I'm not sure he understands the new treatments and what I'm talking about. I've requested he take the time to learn and to learn my individual asthma situation and plan, but he's very busy and probably won't. I told him probably next time I'll just email him since he's not good in those situations. It is nice when you're going through something scary to have someone with you, even if it's over the phone...

I also emailed him to educate him about nebulizers used in emergency management and how it doesn't always completely reverse the attack for me, but it keeps the severity less and stablizes it until prednisone kicks in, which sometimes can be a matter of days due to steroid resistance. I tried to explain to him what 55% peak flow means in terms of risk of becoming unresponsive, what an incomplete response to the neb means, and that most of the time I can prevent the attack from getting that severe (where I lose consciousness) as long as I catch the deterioration in time by monitoring the peak flows and aggressively nebbing early on when it starts to drop. I'm not sure he's interested in understanding all of that, though. He's my best option for a medical POA, though.

Mostly, I just would like it if he could deal with it so if I do end up one of these days dying at home, then I won't have to die alone....but for some reason he can't and I guess still sees me as a healthy 16 year old, when he first met me.

So, your adrenal glands stopped functioning from the prednisone, and the hydrocortisone pills are to replace the corticosteroids the body normally produces?...or are they to treat the asthma? I've never heard of hydrocortisone pills used to treat asthma. I'm fortunate in that so far I've not had major effects from the prednisone, but I've had to make major life style changes including moving away from friends and family to minimalize it since I was taking about 4000 mg a year. Even so, my allergist is not happy with the amount of prednisone I use (now about 1500 mg a year), but I've done all I know to do. Still, I am fortunate as I've not had any major medical effects from it so far....except being crazy while on it . Anyway, thanks again for your support and I don't ever mean to sound like I take things for granted or complain while others are on vents all the time. With me, I'll never qualify for disability due to the state regs as I've discussed on other threads...but fortunately I can work on call and I make enough for my needs, but it is unstable employment. I wish sometimes I could work full time and contribute to the community that way...but we'll see. I'm trying to use the experience to somehow grow into a more loving and kind person, but I'm still learning. I'm trying to be like a flower that takes the fertilizer stuff of life and turns it into something good. Thanks again for your kind prayers and responding.
 
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amcate replied to sgbl88's response:
I'm in agreement with my allergist's view on antibiotics. What he's trying to avoid is me using antibiotics when I don't have an infection. I can have rather nasty exacerbations from pollution or from high levels of exposure to mold, for example.

Sometimes my asthma will crash, meaning after months of strong green zone readings it will go down rapidly, sort of in an uncontrolled free fall. Literally, the peak flows even that morning may have still been strong green zone readings....then wham! Usually that happens when I've been exposed to pollution from industrial accidents or fires or when I have an infection. So, they normally don't take CBCs or wait for the results of any cultures. That's why they want me to hold off unless there are signs of infection....to be sure I can get a highly effective antibiotic in my system quickly (and they hope it's a bacteria and not a virus). He's concerned if I use it too much, then organisms will become resistant and it won't work when I need it.

I just felt bad because the signs of infection didn't show until after I had been at work 2 days and I had seen patients. Thanks for your response...I was thinking of you and wondering how you were doing.
 
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amcate replied to amcate's response:
I wanted to thank the both of you for praying for me. I'm better over the last week since stopping prednisone and finishing the antibiotics, though not optimally controlled. I'm thankful I don't have to go back on prednisone right now.
 
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amcate replied to cwille's response:
cwille: I spoke too soon. I'm back on prednisone. I figure every trial has the potential to teach me something, and I'm continuing to try to learn to differentiate between what I can control (and put my energy there) and what I can't and not get upset in either case. Hope you are well.
 
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cwille replied to amcate's response:
sorry to hear about going back on prednisone, i use to find out that when i got off it , just about 2 weeks later i was back on it. good luck on this one hope it doesn't last too long.
 
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amcate replied to cwille's response:
cwille: Thank you for your kind response. Although my state provides me with prescription asthma meds with a $3 copay, they don't for over the counter....so I had to go off the decongestant as I couldn't afford it this month (I still had antihistamines without decongestants, so used those instead). Also, folks here continue to complain of their "allergies" and sometimes when I go outside I can't see the mountain (forest service could be doing controlled burns...they have a habit of not letting people know). So, we'll see...the good news is that I'm getting a lot of work done and very productive, been in a good mood, I'm not as bad as I was during the last pred burst (when I was coughing up big globs of yellow and green, which have gone away and stay away). Other good news is my last check of the month was $200 more than I anticipated and one of the places I work say they need more days....meaning on Sunday I'll be buying more decongestant. Thanks again for your kindness, and I hope also that you're situation improves.
 
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cwille replied to amcate's response:
hi again, i know all about the allergies too, i am on cetrizine which i guess is the generic for zytrec (sp?) and a nasal spray. What i also do is a nasal rinse, i'll be honest i don't know if it works or not, but it can't hurt, living in florida right now with the pollen so high i figure why not. i have been doing the nasal rinse for awhile, but my wife is now doing it and she says it helps her, and i have seen other people on the message board use it to and love it. Anyway i get mine at walgreens. Maybe give it a shot. good luck hope everything keeps getting better.
 
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amcate replied to cwille's response:
The first allergist I saw referred me to an ear, nose, and throat specialist. He gave me a recipe for a home made nasal rinse, which I use once a day before putting in the nasal corticosteroids. It does help a lot. Even so, when I left Houston to see if I could breath better somewhere else, I consulted with the head of the board for Allergy, Asthma, and Immunology in Texas, and he thought I could use a decongestant as well due to still having some post nasal drip, creating a cough. So, I usually use both depending on the level of asthma control.

Anyway, this go around (first day off pred) I'm wearing a mask as much as possible. I find that when I've had an infection, the asthma really responds a lot to everything...much, much more than normal. It's like the infection responders tell the allergy responders to hype it all up.
 
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amcate replied to sgbl88's response:
cwillie and Sonya: I've been off the second burst of prednisone for a month now, and it's holding steady! (Yeah!) Thank you both for your support. It really means a lot to have a place to go where others can understand, especially in a world where so few do.


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