Living with conditions like severe asthma and posterior glottic stenosis is a daily battle. As a respiratory therapist, I strive to share my experiences honestly, hoping to provide real-life insights into living with these conditions.
My Medical Records
My medical records from recent hospital stays provide context for my ongoing struggles. Despite the risks of exposing too much of my private data, I believe in being transparent about my health to contribute to finding solutions for these diseases. Here are my actual records…..
Hospital Admission and Discharge Notes, Sept 10,2020
Hospital Admission and Discharge Notes, June 7th, 2020 (Had to laugh about the conflicting info I highlighted in yellow about 4 pages in, regarding walking and exercise.)
Sedation Issues
I’ve faced sedation challenges during ventilator use, but we’ve found drug combinations that work. Thankfully, I haven’t experienced anesthesia recall in years, which was a significant relief.
ICU Delirium: A Recurring Nightmare
ICU delirium has been a persistent issue for over four years, affecting me both physically and emotionally. My recent hospitalization was particularly harrowing, with delusions of being kidnapped and moved within the medical system. These episodes often occur at night and feel incredibly real, even leading me to call 911 during one delusion.
Physical Discomfort and Medication Effects
Delirium isn’t just mental; it also causes physical discomfort, like extreme breathlessness. The medications used to manage agitation can sometimes worsen the situation, making it crucial to balance sedation carefully.
Post-Extubation Delirium
Post-extubation delirium is another challenge, especially for older patients. It’s embarrassing and can change how people perceive you. With the rise of severe COVID-19 cases, this phenomenon is becoming more common.
Possible Solutions
I’ve discussed my experiences with my doctors and believe that sedation medications play a significant role in my delirium. We need to adjust sedation protocols during weaning off the ventilator to minimize these episodes. Additionally, addressing urinary tract infections, which can worsen delirium, is essential.
Future Directions
Finding ways to avoid intubation altogether would be ideal, but it’s not always possible. Non-invasive ventilation can help during asthma flares, but it’s not always effective in emergencies. A permanent tracheotomy has been considered but comes with its own challenges.
Conclusion
Despite the difficulties, I remain hopeful and committed to sharing my experiences. If my story can help even one person or researcher, it’s worth it. Let’s continue to strive for better understanding and management of these conditions.
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I would love to communicate directly and explain my history and my current horrible experience since 2014 when a first year doctor replaced my old long standing primary care doctor and diagnosed me as having COPD and refused to give me a Kenalog shot and insisted that the new ICS inhalers were the “new” way to deal with both asthma and COPD. He almost killed me. I spent a month long life in a nightmare of suffering, pain, almost impossible breathing on my own, terror and finally a recognition inside of my own body and mind that i would die if I did not stop the inhaler treatments. This doctor had said to me that I should disregard my own internal experience that my condition was worsening from day to day, until at 3 am in the middle of the dark night, sitting on my sofa trying to breath when it hit me that I was dieing. In any case, then for the next six years i have been recovering from that incident and just discovered your blog and it is so great to find someone who is telling the inner, personal truth of what it is like to deal with being a life long asthmatic. I do have on fortunate experience that I want to share with you — my old fashioned family doctor in the mid-1950s had me treated with first a series of scratch tests to identify my allergic reaction characteristics for 300 allergens. Then I was treated by the immunological therapy of shots from the then Cutter Laboratories. I now realize that I would tell anyone with asthma to attempt such testing and treatment, as by my 20s and 30s I was having very limited asthmatic events or what I call “seizures.” There are so many questions I would love to talk to you about, even by phone if that is possible. But this message is to introduce myself and to convey to you my deep appreciation for all the good works and for your public discussion of asthma from the inside out, personal experience.
Hi William. Thank you for the kind words. Im sorry to hear about your nightmare experience. Medicine and healthcare has changed so much over the years, but oddly treatment for asthma and COPD is pretty much the same. There are newer meds of course, but they basically do the same thing.
The delirium Im referring to in my post, has to do with the strong sedatives and opiates they give when you’re on a ventilator. Between those and the high dose steroids, it can make anyone bonkers.
Not sure I can help, but feel free to ask me any questions. Hope you feel a better
Steve G