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Living with Asthma
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Living with Severe Asthma

Hi, my name Steve, or as some of my friends and blog readers know me.....Breathinstephen.

I was born 6 decades ago with an extremely severe form of asthma and have managed to survive much longer than any of my doctors thought I would. I'm also a retired Respiratory Therapist by profession, so I've been on both sides of a ventilator so to speak.

I'm here to share my experiences and help others who might be struggling with this crippling disease. Thanks

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My asthma also had me on the ventilator as well. My asthma got worse after 2012. and right durning hurricane florence my asthma been acting up and it still is. I been on a high dose of steriods now since im decreasin my dose instructed by my doctor im doing 20mg. My heart rate been up. After doing many tests come find out its a medicine i was taking messing with my asthma its called metoprolol. My new pulmonary specialist says its a bad medication for a several asthma patient. since he took me off it i been ok. Im seeing him every 2 weekz until k can get my asthma under control. They found alot of stuff im allergic to and is sending me to an allergy and asthma association.

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Why were you on metoprolol? For high blood pressure? Well, I'm happy that you're doing better since they stopped it.

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Yes for my blood pressure i started going to a new doctor because doctor i saw had left and idk if he read my file good but he just change my medicine but thank you i appreciate it

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Hi Steve! Nice to meet you. I have had asthma for 45 years and it was considered well controlled for the last 19 years. This year with the addition of two new kittens and a new nut allergy my asthma no longer meets the classification of well controlled but I am getting the help I need with stronger and more meds. My first husband recently died of COPD. He was put on a ventilator the day before he died. I am not entirely sure why but I think it was to give the family time to make a decision. His doctor had told him if he got to the point of being put on a ventilator he wasn’t ever coming off of it and there was nothing else they could do. He didn’t want to be kept alive by a ventilator indefinitely. Since you have been on both sides of a ventilator can you tell me about your experience about what it was like? Was it painful? Were you conscious or semi conscious? Does it really make you feel more comfortable or just keep you alive long enough for your doctors to help you get off of it? What were the long-term side effects to your throat and esophagus? Is it a necessary evil for those who have the chance to get off of it and live? I am thinking about the Physician’s Order for Life Sustaining Treatment where the ventilator is in the COMFORT section of the form. Based on your experience would you select that for yourself? Thanks for sharing your experience and expertise!

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Hello, Sorry to hear about the loss of your husband and the reoccurrence of your asthma.

Ill try to answer your questions the best I can, but keep in mind that I have asthma and not classic COPD ( though both are classified as COPD in the long run). First, intubation is not painful , because they put you to sleep before doing it. Having said that, there have been a couple occasions when the drugs they gave me to put me to sleep didn't work for some reason and I remained fully conscience for several minutes before falling asleep. Rest assured though, that this type of complication is extremely rare. Most people will fall asleep and not be aware of anything.

Regarding intubation making you feel better, the reason they intubate an asthmatic is to prevent you from literally tiring out from the work of breathing and to prevent you from going into full blown respiratory failure. It's basically to prevent you from dying from the attack. Once your lungs are functioning better and your blood work looks good ( usually within a day or two, sometimes longer), they will wake you up and let you breath on your own while still hooked up to the ventilator. If you're able to breath on your own they will pull the tube out ( what they call extubation).

Regarding long term side effects of intubation, Ive been intubated and put on a ventilator a crazy 44 times ( which is probably a worlds records) and other than a very mild sore throat and a raspy voice for a day or two, Ive had no long term problems. Its important here that its not so much having a tube in your throat, but rather how long youre on the ventilator that could cause complications. While a ventilator does a good job of breathing for you , it doesn't work the way natural breathing does. The longer you're on a ventilator the great chances of developing secondary infections, like pneumonia. Again though, this is not typical for asthmatics, because we're seldom on ventilator for more than 3-4 days.

To answer your last questions regarding "Advance Directives", I actually wrote a blog post earlier this year on the subject, which you can find here. breathinstephen.com/advance...

I should say that its very common for pulmonary doctors to tell their end-stage COPD patients, that once they go on a ventilator its very difficult to come off. The reason they say this, is because that once the ventilator takes over work of breathing for a person with severe disease, the patient in a sense, gets used to the machine doing all the work, so that when they try to breath on their own, they tire out instantly and end up having the machine assist them again. Depending on how severe ones COPD is, it IS possible to wean off a ventilator, but it can take weeks or even months of trial and error to build up the strength to gradually wean off the ventilator. Mind you, that after 10 days on a ventilator, they will also have to do a tracheostomy ( put a hole and breathing tube in your neck), as its not safe to keep a regular breathing tube in your throat longer than that.

Finally, and I don't know the circumstances of your husband last days, but if he was put on a ventilator, chances are he was being heavily sedated most of the time. I can tell you from my own experiences that they usually use potent opiate drugs to keep you very comfortable, almost Euphoric. If that's the case, I can assure you that your loved one had not only a painless death, but a good one as well.

Hopefully, you 'll never have to experience any of this, but honestly, being intubated and on a ventilator on a short term is very easy to tolerate and not painful at all.

Steve

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Thank you, thank you, thank you for your response and alleviating my fears and the link to the blog post. Very helpful!

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