So, 2 and a half weeks ago I started flaring and a couple days later ended up in the freaking Hospital again. This was a really bad one. I was intubated for 5 and half days, developed severe ICU Psychosis and had intermittent problems with my blood pressure. But this post is not supposed to be entirely about me, it’s about Douglas.
Douglas is, and has been the center of my Universe for more than 33 years. He’s not only my life-partner, but he also works behind the scenes as my health advocate and caregiver when Im sick or in the hospital. When I cant speak for myself, he speaks for me. His voice is the main reason Im alive today.
Douglas is not a trained medical person, but he knows more about my type of asthma and other health issues than anyone on the planet. If he doesn’t understand certain tests, test results or medical terms, he finds out. If he encounters a new drug, he learns as much as he can about it. He knows what I go through on a daily basis with this disease and is often on the receiving end of my not so happy side. Hes seen the good things and bad things.
Everyone knows Douglas. Ask 90% of the ICU Nursing or medical staff at UCSF in San Francisco and they’ll say “Oh yes, we know Doug”. He’s the guy we call when we have a questions about Steve’s Asthma or how best handle him when he’s on the ventilator. He’s the guy we call when we have questions about what works best to treat Steves asthma. He’s the guy we call when something isn’t going right or Steve gets post extubation delirium.
Taking care of a sick labile asthmatic is a full time job. Douglas springs into action the minute my asthma starts to flare and will stay home from his regular work and man the phones 24/7. From the moment I enter the ER to the minute Im discharged from the hospital he is on call. Doug is the person who makes sure that I receive the specialized care I not only need, but also deserve.
Douglas has an excellent repour with most of the RT and ICU Nursing Staff. He knows how challenging it can be to treat someone like me, especially in the hospital setting, and will give his heart felt praise to those who attempt to do their best. But he also doesn’t put up with any bullshit either. Whether it be a doctor or a Nurse, if someone screws up,is neglectful or demonstrates an obvious lack of compassion, he’ll let them know. If need be, he’ll go ALL the way up the chain of command till things are fixed.
He does these things, not because he likes to call the shots, he does it because he hates to see me suffer in any way. He sees the daily toll and the negative effects this disease throws at people like me. He understands the true uniqueness of my asthma and all of my special quirks. He knows what I like and what I hate. He keeps notes on everything….I mean everything.
Youre probably thinking, this guy sounds too good to be true. You would be right. You might be thinking Im very lucky to have someone like Douglas in my life, youd be right. You might also be thinking is all this necessary? The answer is absolutely yes. While most people always stive to provide their greatest care, inpatient severe asthma is an extremely expensive condition. My medical bills average well over a million dollars EVERY year, so some good better come out of it.
Douglas knows that it’s not in my nature to complain or rock the boat when it comes to my asthma care. He also understands that Asthma in a general way is a very common disease. Doug also knows that there are people out there who have a very uncommon, complex and extremely severe form of the disease and that if you dont make noise, nothing gets done. If you’re one of those people, you need a Douglas in your life.
Douglas will often hold back info he doesn’t want me to know or he thinks will stress me out. Like those times when I stopped breathing or starting having seizure’s while on the vent. But Doug is also a realist. He knows it’s only matter of time before he receives the dreaded “Were sorry to inform you call”, so he always tries to keep a little distance between the reality and his fears.
I suppose in the end, it’s about love and dignity and knowing that if the tables were turned , I would do the same for him.
I love you Douglas for all you do to keep me going.