Get well and birthday cards on the window sill of my brother's room in the ICU
I wrote this yesterday, but I waited until this morning to publish it as it was getting late. The title is the TL, DR version.
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Part of a comment in this diary inspired me to post a few words the long story of my brother’s current experience and why you should go to the doctor if you feel sick.
I tend to not go to a doctor unless I honestly feel like I could die.
Along with cost considerations, for decades for many Americans, choosing whether or not to see a doctor was also partially based on considering whether it was worth it to risk uncovering a preexisting condition or establishing a new one. It was pretty horrible to have to triage oneself in order to maintain coverage in the event of true catastrophic illness or injury.
Since the ACA, real health insurance that doesn’t vanish when you need it has become available to millions of people who were previously unable to get and/or afford coverage. The recent American Rescue Plan has made it possible for even more people to get coverage. It’s reprehensible that certain red state governments have stood in the way of access to affordable coverage for people in their states; and scary that SCOTUS is soon gonna issue an opinion which could possibly set us back to square one — the non-existent rethuglykkkon die-sooner plan. But until that happens, for those of us who have coverage and even those who don’t, if you feel sick, GO TO THE DOCTOR!!!
On Saturday, March 20th, when I was working out of town, my brother called me to say he was feeling very sick. His symptoms sounded like covid and I told him to call the advice nurse right away. “What’s the advice nurse?” he asked. He’d never called the advice nurse before and didn’t know such a service existed. I explained to him the advice nurse triages your symptoms, schedules appointments if necessary and tells you what to do. “There should be a number on the back of your insurance card,” I told him.
It turned out there was no number for care on the back of his blue cross insurance card, but we found one online. I told him to call and, “if they tell you to go to the emergency room, go. If you’re too sick to go, call 911.” The advice nurse set him up with an appointment for urgent care on Sunday.
Sunday afternoon, as I was headed even further out of town for more work, I called him to ask what happened at urgent care. He said he didn’t go because he was feeling too sick to go. I told him to call 911, but he said he was sure he just needed to sleep. I told him that if he didn’t go on Monday, I’d call 911 from out of town for a welfare check on him.
I was worried it was covid, but he seemed coherent on the phone. He doesn’t respond well to suggestions about seeing a doctor for this or that ailment, even if he is complaining about it. I reasoned that if it turned out to be covid, he’d probably be fine if he got monoclonal antibodies the next day. I thought he would have never forgiven me if I had called 911 that evening. But I wish I had, because the next day he didn’t answer his phone.
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Since my elderly father’s hospitalization in June of 2020, my brother and I have been taking turns staying with my father in order to keep him out of a facility during the pandemic. It’s sometimes been tough juggling him between us, but one of his doctors told me that we probably saved his life, so it’s been worth it. I had been staying with my dad since January 1st. My brother had just taken over for me on March 19th. I was relieved to be relieved, but it wouldn’t last long.
On Monday March 22nd, I tried over and over to get my brother on the phone. I called my father and had him risk the stairs four times in order to try to wake my brother. Unfortunately, my father was unable to perceive the distress my brother was in. I called my father again and told him I was gonna call 911 for a welfare check, which I did.
A few minutes later, while speaking with the officer who would check on my brother, I heard his police radio through the phone. “55 year old male, unresponsive,” said the dispatcher. The officer said the call was coming from my the house — I think my dad checked my brother again and this time realized he was out of it — and he got off the phone in order to respond. I was terrified — and also angry!
“Why the fuck didn’t you go to urgent care yesterday?” I yelled to nobody in my hotel room. “They don’t schedule you on Sunday unless it’s really bad!”
A few minutes later I got a call from the officer. When I spoke with him before, I had mentioned to him that we had been taking care of my father who suffers from dementia. When he called me from my dad’s house, he asked if I was correct in saying it was the older male who had dementia, because the younger male (my brother) was unable to respond. I assured the officer that my brother is normally sharp as a tack, so if he’s not responsive, something is terribly wrong.
They rushed him lights and siren to the emergency room at Kaiser in Richmond (CA). My brother perked up a bit in the ER and was able to give them some info and name me as his decision maker, but soon after started having severe shortness of breath. It was at this point that the docs called me to tell me what was going on and ask questions about my brother’s health. they said he had sepsis and had just agreed to be intubated and put on a ventilator. The docs asked my permission as well. Scared as fuck, I said, ”yes, do anything and everything you can to save him.”
They intubated him, then transferred him to the ICU in Oakland where they had a bed for him. They said he’d be on the ventilator at least for three or four days. They’d try to wean him as soon as he was ready. I asked about visiting him and was told I might be able to see him later in the week.
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The next morning I got a call from his nurse. “there’s someone who wants to speak to you,” she said. The next voice was my brother’s! He sounded hoarse and medicated, but himself. I was surprised he had been extubated after they told me it would take at least a few days, but I was very relieved to hear him speak.
Later I got a call from his doctor who told me that my brother had extubated himself! I guess his sedation wasn’t enough, he woke up and wondered, “wtf is this?” and pulled it out. He was lucky it didn’t do damage on the way out as it’s held in place by a bladder which is supposed to be deflated before removal. It was good he was able to communicate, but it wasn’t good for his recovery.
The next day the doctors let me visit him. It was my first time ever visiting an ICU. I wore a real NIOSH N95 and goggles over my glasses. His infection was getting worse, he was again having difficulty breathing and he was losing control of his speech. He repeated words over and over, unable to get out the words he wanted. When I asked him if he was clear minded he said, “Clear… open.” Then again, “Clear… open… clear… open…” not unlike Dustin Hoffman in Rain Man.
I could tell my Brother’s voice wasn’t saying what his brain intended it to say and he was frustrated and scared. He was breathing pretty quickly and gasping a bit. I asked him if there was anybody he wanted me to contact. He struggled to get out the name of his best friend for decades, but I was able to understand and he confirmed that I was spelling it correctly. Later that evening, I got a call from a doc saying my brother had been intubated again. I said I kind of expected it and asked him to take good care of my brother.
That evening I contacted his friend, who told me a bunch of things I had not known about my brother and his phobia of doctors. Listening to my brother speak about his health, I always assumed he was proactive about seeing the doctor. But his friend let me know otherwise. For reasons I won’t go into here, it turns out that my brother has mostly avoided seeing the doctor.
His friend who has had plenty of health issues of her own but is proactive about them, gave me a rundown and sent me an email with what she knew about my brother’s recent medical history. She knew a lot. I read her email to the docs and they took special notice of a cortisone shot he had recently had in his knee, wondering if it might have been the source of his infection.
While they couldn’t locate the source, docs said my brother had an infection in his bloodstream (Bacteremia) which was spreading all over his body. They were treating it with, “big gun antibiotics,” as more than one doc referred to them. But gradually over the next week or so, every organ in his body became infected and his chances for recovery became slim to none. I was contacted by the, “palliative care team,” and they recommended I agree to DNR him in the event of a heart attack, which I did. I could tell they expected him to die, but weren’t yet telling me that directly.
I hadn’t yet pondered dealing with my brother’s death, as I was more concerned about us dealing with my father’s death when it happens, hopefully long into the future. The docs said he was, “headed in the wrong direction.” I had been holding out hope that the antibiotics would finally takeover and he’d start getting better. But his situation was becoming dire and I wasn’t able to keep assuring myself that he’d be OK. He was a fucking mess and so was I.
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However the next day, he opened his eyes when a nurse called his name, and he was able blink on direction to do so. I ascertained from the docs that there would be ample opportunity to compassionately let him go if he had a heart attack and after they were somehow able to restart it, and it would be obvious if he was damaged beyond repair. So I removed the DNR authorization and they put him back on, “full code.”
That same day, pandemic restrictions relaxed in Alameda County, and my brother started to receive a steady stream of visitors. I started visiting him every day and he had 2-6 friends stop by every day as well. A friend of his had started a google group to provide his friends with updates on his situation. So when things opened up, his friends started coming from all over to see him and try to boost his recovery. This marked his turning point.
Nurses and doctors told me his friends had brought instruments and played, sang, recounted memories of past times together and read poetry to him in his room. He received get well cards in the mail from all over the country. One of his nurses said in his ten years at Kaiser he had never seen a patient receive one card in the mail, let alone a whole window sill full of them.
Every time I visited him while he was sedated enough to be unconscious, I spoke directly to his subconscious, telling him I didn’t want him to think that mine was a last chance visit. It was instead, a morale boost visit, and I’d be back the next day. I’m a musician, but I didn’t dare play for him, lest he subconsciously think I was playing his swan song!
His progress was mostly three steps forward, two steps back. Sometimes one step forward, four steps back. There were many scary moments — like the time his heart raced and they had to jolt it back to a normal tempo. He almost died immediately then and almost died more gradually on other occasions. His nurse said that for awhile he was the sickest patient in the hospital. But slowly he started to come back.
One afternoon while visiting him and talking to him, he all of a sudden nodded yes to let me know he understood and knew what I was telling him about and I could move on to the next subject! I asked him if he could shake his head no, and he did so enough for me to be sure it wasn’t a fluke. From then on, he started to regain control of his situation, little by little.
He still had scary periods of high fever and doctors still worried about his final outcome. They feared he’d be paralyzed from the arms down, due to a lesion high on his spine. They worried he’d never be able to speak again due to a lesion on his brain. They said that his body had been through so much, it was unknown how much his organs would be able to recover. He was coming back, but he was still one very messed up dude with an uncertain but not overly hopeful prognosis.
I asked one of his docs if the antibiotics finally manage to kill the bad bacteria, what happens to the dead clumps of it in his body? She said the body is able to flush it away over time, and since my brother didn’t have any blockages that required surgical intervention to clear them, he’d stand a good chance of flushing most or all of it away. But she also warned me that since he had been infected for so long, that there might be some irreversible damage to his organs and the rest of his body. While I was worried about him not making a complete recovery, I clung to the idea that the antibiotics would eventually work and the dead bacteria would be flushed away.
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He had been on the ventilator for 28 days when he was finally stable enough for docs to do a tracheostomy so they could take the ventilator tube out of his mouth and move it to his throat. They told me they hoped he’d eventually be able to get off the ventilator and onto a trach collar with just oxygen, but he might not be able to control his diaphragm. If he couldn’t regain control of his diaphragm, he’d be on the vent forever. When I mentioned the issue of controlling his diaphragm to him, he nodded no. “You feel you can access your diaphragm?” I asked. “Yes,” he nodded! Indeed, he was soon able to initiate his own breaths when they tried the ventilator on the spontaneous breathing mode, in which the machine responds to the patient, not the other way around. He lasted only 20 minutes the first time he tried it, but 7 hours the next time, and by the next day he was on spontaneous mode 24/7.
Days later, his first test of the trach collar ended after just 10 minutes. Docs told me they were concerned that this was an indication that he’d be on the vent for a least a few months, if he’d be able to get off of it at all. But the next day he lasted for 5 hours, and the day after that, over 12 hours. Two days later, he was off the ventilator completely and it had been rolled out of his room. Woo Hoo!!!
He was on the ventilator for 40 days. He was on continuous dialysis for a few weeks before he started receiving it intermittently, when he was stepped down to a wing of the general hospital after six full weeks in the ICU. FWIW, three days or more is considered a long stay in the ICU.
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In the general hospital, they took steps to medically optimize my brother for discharge to a long term acute care hospital (LTAC). After my father was hospitalized a few years ago, I became somewhat familiar with skilled nursing facilities (SNFs) and assisted living facilities (ALFs), but I was unaware of LTACs.
I’ve since learned that LTACs are a uniquely American phenomenon. They’re mostly for-profit institutions which take care of patients who are too sick for a SNF, but medically stable enough to leave the hospital. They’re cheaper than regular hospitals and insurance companies save money by insisting patients be transferred to them ASAP. Because most of them are profit making enterprises and because they must provide hospital level care (they are full hospitals sans ERs), they tend to cut corners to keep profits high.
From what I can glean from the internet, there are few good LTACs and plenty of bad ones. Of course, the good ones rejected my brother and the worst one — the one with the scary reviews by former employees saying they felt they were being asked to do things outside of the scope of their practice that would risk their personal licenses; the one that employee reviews said retaliated against employees for bringing up issues that needed to be addressed by management; the one that had a whistleblown covid outbreak in which non-covid patients got covid; the one that both patient and employee reviews mentioned patients being put in rooms that were not designed to house patients, without bathrooms, windows, phones or call buttons; the one with only video visitation; and the only local LTAC without stats on medicare.gov — was the only one to accept my brother.
Throughout my brother’s illness, I had been a persistently strong advocate for him. But his impending discharge forced me to become a polite but fierce advocate — neither he nor I would agree for him to go to the scary place! It was just not gonna happen!
Docs told me the issue was that the good place stipulated that the discharging hospital would agree to readmit the patient if it became necessary to do so. Since my brother isn’t a Kaiser patient, Kaiser couldn’t agree to those terms. I argued that my brother had been through a lot as had the doctors and staff, and as such both he and Kaiser had a lot of equity in his recovery. I said it was important that Kaiser be as concerned with his final outcome as it is with his condition upon discharge. I stressed that it would be terribly unfortunate to squander such equity by placing him in what might amount to a covid ventilator farm, where many patients are sent with the expectation that they will die.
I said he should be in a place where people go to recover and are motivated to do so. I said I hoped he’d be able to go to an acute rehab facility, where they don’t do hospice and patients expect to recover. I asked if UCSF might be able to admit my brother on paper so he could be officially discharged from a hospital that could readmit him, but was told that couldn’t happen. My brother wasn’t ready for an acute rehab (he still isn’t), but his doctor asked me to wait a few days while they tried to work something out to get him better options.
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And work something out they did! When she next spoke to me, his doc said Kaiser had agreed to readmit my brother if necessary, and the best rated LTAC in the area had agreed to accept him. A few days later, he was moved to that LTAC, where he continues his remarkable speedy recovery.
He regained full use of his voice shortly after his arrival. He’s regained control of his arms and his legs are getting better. He’s been off the trach collar for more than a week and was decannulated (had his tracheostomy removed) a few days ago. He passed his swallow test and is now allowed to drink water. He has his eating test today. After passing that (we hope and expect — but no pressure!) he looks forward to getting the feeding tube out of his nose and eating food for the first time in over two months.*
He has been through the wringer and while he has come a long way very quickly, he still has a long road ahead of him. At least he should be able to eat and communicate as he navigates it.
My brother will soon be discharged from the LTAC to a SNF. As soon as he gets enough control of his legs, we hope he’ll be headed for an acute rehab facility relatively close to his apartment in San Francisco, from which he can transition to outpatient care. Most of the docs, nurses and other staff my brother has worked with at both Kaiser and the LTAC have been wonderful and he has especially good things to say about the therapists. I’m especially relieved he didn’t get stuck in the scary place!
As I mentioned before, my brother isn’t a kaiser patient. He arrived at the hospital in his birthday suit with no ID or insurance card. All they had was my name and number from the emergency personnel, which he was able to confirm when he initially perked up. On the second day of his hospitalization, I got a call from somebody at Kaiser who started talking about my brother’s case from a billing standpoint. Expecting an urgent request for his insurance information, I was flabbergasted when the Kaiser guy said that Kaiser had volunteered to cover the costs of the first 30 days of my brothers care.
I told him my brother has insurance through his work and we’d get that information to them, but wow! Over the years I’ve heard of various people having great difficulty getting Kaiser to cover things. So it was a total surprise to hear this and it was also a relief, because I was already stressed enough without having to deal with getting his out of plan medical bills covered before they turned into pumpkins. Since then, I’ve dealt with his employer’s insurance company, the Kaiser medical records office, and I filed SDI for him, but all in all it hasn’t been too bad. I’ve been able to focus more on aiding my brother’s recovery and advocating for him, than making sure it’s paid for.
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So why did I write this long ridiculous thing? Because not only did I need to talk about it, all of it might have been avoided if my brother had gone to the doctor when he started feeling sick.
Infections are quirky things. It’s entirely possible that by the time he felt sick, it was too late to stop the infection from spreading. But if he had gone to urgent care, they would have done a blood test (or sent him to the ER) and figured out he had an infection. It stands to reason that if he had started antibiotics earlier, he might have avoided sepsis, near death, and all the problems it has caused for him. So…
If you feel sick, GO TO THE DOCTOR!!!
Even if you don’t have health insurance, go anyway! Whatever happens with the ACA, hospitals still have to treat you. If you can’t afford it and you have a choice, go to a public hospital if you can get to one. It’s easy for me to say, but I think it’s better to risk a medical bill than to risk your condition getting so bad that you lose your life. The passage of the American Rescue Plan and our experiences with the pandemic lead me to believe that regardless of how SCOTUS rules, we are moving unstoppably towards affordable or free healthcare for all and we’ll get there soon.
My brother will have to watch for signs of infection in the future (many sepsis patients are readmitted within months of discharge), but he is out of the deep woods for now. He still has to get his kidneys** and legs working well again, but based on his amazing progress, both he and I have confidence that will happen.
Now that he’s with it and able to process everything, he’s very frustrated with his current situation but has it all in perspective. He knows he’s beaten the odds, he’s happy to be alive and he looks forward to going home. My father and I are also happy he’s alive and making a remarkable recovery.
Again, if you’re feeling sick, go see the doctor long before you feel like you could die, when it could be too late. Don’t let a simple infection, which can be treated with a course of relatively mild antibiotic pills, get so bad that you develop sepsis and die.
Along the same lines, go to the dentist long before your toothache gets bad. Not only do you risk getting Bacteremia like my brother, causing the infection to spread dangerously through your bloodstream; the more infected it is, the more difficult it is to anesthetize and the more painful it is to treat (I had one experience with the latter and it was the worst pain I’ve ever experienced in my life). So if it hurts, go now or you’ll really have something to cry about!
We have to fix our healthcare situation — we can start by getting middleman profit out of medicine. We have to consider dentistry necessary medical care and provide coverage for it in major ACA plans, not just as addons. We have to remove obstacles which discourage people from seeking care before their symptoms get too bad. And we have to make it affordable enough (or free) so people won’t lose everything they own just because of an illness. But in the mean time, it’s not worth dying to avoid going to the doctor. Just sayin’.
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*I just got off the phone with my brother. He passed the eating test and had his first meal of pureed broccoli, minced meat and potatoes, and ICE CREAM!!!
**Perhaps more exciting, dialysis has been stopped and as long as things remain good, the catheter installed in his chest through which they dialyze him will be removed next week!
Today was a good day!