Hi. I'm Jason, and I believe i have PICS from an extensive ICU stay in 2019. I had my second neck fusion surgery on September 19,2019 and then didn't wake up until November 4, 2019. I had been on a ventilator for 7 weeks, on ECMO (VV) for 23 days and in a coma / sedated for 6 weeks. I had 2 bouts of cardiac arrest that both required CPR to revive me each time, vent acquired pneumonia, ARDS, 2 plural effusion clots in my lungs, and 2 deep vein thrombosis (arm & leg). I had a tracheostomy in October 2019.
Immediately following the cervical fusion surgery when the breathing tube was removed, my trachea collapsed from tracheomalacia (floppy trachea that can and did collapse), which had been undiagnosed.
I woke up on November 4th and was transferred to a long term acute care center on November 8th. While there, I had to learn to walk again and was also weaned off of the vent. I was only there for 2 weeks before I was walking and able to dress and care for myself enough to go home. While there, I was convinced that I was going to die, and I worked extra hard to get out and go home. Due to having tracheomalacia, the trach was left in place and really no after care was given other than ordering supplies to care for the trach.
After going home, I got pneumonia approximately 11 more times and was hospitalized each time and was inpatient for at least 7 days each of the stays. In November 2020, I finally had the surgery to repair my trachea and bronchial tubes. I was in an ICU for 5 days following this surgery and again on a vent. A week later, I was admitted back into the hospital for a pneumothorax and pneumonia again. Finally on November 4th, 2021, I had the trach removed and have been doing fine without it since. I am currently recovering from covid at home and have not required any medical intervention. My wife happens to be an ER nurse (RN) and has done a phenomenal job of taking care of me throughout the entire ordeal.
Prior to any of this I was a police officer for 13 years but had to quit due to PTSD in 2014. Having previously been diagnosed with ptsd, I was quick to realize that I was suffering from it in relation to my medical issues and from delusions/hallucinations that I experienced while I was sedated. I've felt as if something was wrong with me but it wasn't until recently that I learned of PICS This was quite a relief to know that I was not alone or just an oddball having all of these symptoms (depression, anxiety, lethargy, nightmares, lack of motivation, insomnia and also excessive sleeping, lack of concentration, and just overwhelmed).
So, it has now been over 2 years and I'm still experiencing these things and seem to be getting no better. I also have extreme and constant pain from neuropathy caused by the ECMO cannulas. I was referred to a pain Dr and put on opiods which I take daily and get little relief. I receive disability and am physically and emotionally not able to work. My daily life consists of getting out of the bed around noon-2pm and getting on the sofa where I watch TV and usually fall back to sleep. I rarely drive or go anywhere unless my wife drives us, and we usually only go out to dinner or to Walmart. I used Walmart prior to covid as a warm place to walk around to try to build up my pulmonary capacity. Having the trach prevented me from ever being able to do so. Now that I no longer have the trach, I am able to walk without getting so easily winded though.
My primary care dr is a VA Dr and has no clue about PICS so I don't know where to turn for help. I live in the western metro Atlanta area. I've heard that Vanderbilt has a PICS unit but traveling there for regular visits wouldn't be realistic.
Anyhow, that's who I am and most of what I've been through.
Of course, I didn't mention all of the battles that we have had to have with our insurance company, Dr's that treated me in the ER that were unfamiliar with my case and unwilling to research it to properly treat me (leading to many of my pneumonia cases), having to go to 2 different hospitals (Emory & Cancer Treatment Centers of America) for specialists to treat the tracheomalacia and trying to get the trach taken out.
Lastly, my biggest post icu stay battle was the trach and getting it out. My original pulmonary Dr told me that i would have it for the rest of my life and I was not willing to accept this so I requested to see one of his partners for treatment. 2 months after consulting with the new dr, i was trach free. I really thought that once this battle was over, my mental state would improve, but it has by no means improved. I still have limitations due to the nerve pain along with the mental health issues.
I know this is a very long introduction and apologize for being so lengthy but wanted to try to best explain in full what all i have and am going through.