My ICU Summer: A Photo Essay
Content notes: medical trauma, hospitalization, blood, systemic ableism, death, anxiety
This is a semi-accurate account of what happened to me this summer based on my hazy memories, medical records, and photos. At the time I did not share much and will continue to be intentional about what I will and will not reveal. I’m doing this now so people can be informed of my new situation. I also want to highlight the very steep costs to a disabled individual and their family when a major medical crisis happens and the significant labor that occurs post-hospitalization. This is not a unique phenomenon as the United States has an underfunded and broken healthcare system, but this is my story.
If you would like to support the ongoing costs of my care, please check out the link to my crowdfunding campaign organized by my beloved friend Yomi Wrong:
Also: this is not an invitation for advice or opinions or requests for labor.
In The Beginning…
I bought this journal at the beginning of the 2022 thinking I would fill it with all the exciting developments with my memoir, Year of the Tiger, which will be out in September. Fate had different plans in mind.
As a person with a progressive neuromuscular disease, I am accustomed to adjusting to changes with my body, becoming weaker, plateauing, and accepting new losses in functions and abilities. I have always resisted invasive procedures with the knowledge that one day I will need them. I thought I had more time but that was never up to me. Silly rabbit!
I wore a nasal mask for my BiPAP machine for years and it adequately provided enough ventilation. The last few years I’ve had more difficulty swallowing and eating to the point where I ate a primarily soft diet. Once in a while I would choke on saliva or food, aspirating a bit into my lungs. It wasn’t a chronic problem until recently.
Around the first week of June I kept choking every time I ate something. I would take off my mask to eat or drink and could not swallow a complete bite. A residual amount of food would not go down, forcing me to spit it out in order to catch my breath. I thought this would subside because it was never a chronic issue but it continued for 3-4 days in a row. I would cough and develop secretions due to the aspiration and it would be difficult to breathe and rest. I could only manage to eat some yogurt and began to worry about my hydration and nutrition.
Simultaneously, I developed chest pain on my left side. I was so preoccupied by my swallowing difficulties that I dismissed it as a pulled muscle or minor annoyance. Boy, was I wrong.
On June 4th, I had a video meeting despite coughing from an aspiration earlier that day. I bore through it because I wanted to talk with that person because I wanted some feedback on an ambitious plan I wanted to explore. That weekend I noticed I was breathing faster and having trouble sleeping. I told my sister Emily, who was on a trip with a friend. She sensed that this might be serious and returned home early on Sunday because I was contemplating going to the ER. Because she didn’t arrive until that evening I decided to go the next morning which was a risk but I didn’t want to stay up all night at the ER in case it was nothing. My youngest sister Grace flew in from London the next day because she sensed that we might need her.
The same weekend my dad tested positive for COVID and he went to a hotel to quarantine for 10 days and I had no idea whether my symptoms were related to exposure (it wasn’t).
June 6-11: The First Six Days
An x-ray revealed I had a pneumothorax, a collapsed lung! Holy shit! I was immediately prepped for a chest tube, the first of a numerous painful procedures I went through. I moved to the intensive care unit (ICU) that night.
Since I haven’t eaten for days it was imperative that I have some nutrition but I didn’t want a feeding tube in my stomach. I had a number of concerns due to my respiratory failure and asked for an alternative. The best we could come up with at the moment was a nasogastric tube that would deliver liquid food from a tube from my nose down into my stomach. When the nurse inserted the tube it only went down halfway, my anatomy was weird and there was a buildup of dry mucus in my esophagus. It was incredibly uncomfortable and I had to wait until the next day to have the nasogastric tube inserted again, this time by the interventional radiology (IR) department that guided the tube with a camera, another uncomfortable procedure made even worse because my body had to lay flat on a hard surface even with pillows and cushions propping up my joints bent from muscle contractures.
With the tube in place the issue became how it would fit under my nasal BiPAP mask. A thin tube coming out of my nose created considerable air leaks on my face which impacted my breathing. There were discussions about modifying a mask or tightening my current one. I wasn’t sure if this could be a long-term solution, but I was willing to give it a try.
The formula they gave me, Kate Farms, was milky and just nasty as hell. I immediately started to have frequent diarrhea. Like, uncontrollable diarrhea all day long in my hospital bed. A physical therapist recommended another brand, Liquid Hope, that was made of real food and something I might tolerate better, but the nutritionists said they don’t use that and it’s not covered by my insurance (I learned subsequently from the product’s website that it could be covered with a doctor’s prescription so cross your fingers for me because this shit is expensive).
By the fourth or fifth day the wound from my chest tube was healing and my sisters thought I should go home to recover because they were worried about germs and COVID the longer I stayed in the ICU. I felt unsure but agreed to go home.
We had a feeding machine and formula delivered by the day I was discharged. When I got home we struggled. I had to rush to the toilet often and I was so weak that my sisters had to take me on and off the toilet and support my body. That night I tried mightily to sleep but everything felt off, unsettled, but I hoped in my heart the next day would be better.
By the next afternoon I grew quiet and something shifted. I told my sisters I didn’t feel well and within minutes I told them we had to go back to the ER. My sisters gathered my things as quickly and drove me to UCSF Medical Center up in the ye olde foggy wind tunnel known as Parnassus Avenue, location of the main campus where I attended graduate school over 20 years ago for medical sociology. On the ride over, I quickly went downhill. I was drooling uncontrollably and tears coursing from my eyes. My BiPAP mask would not stop leaking, making loud farting sounds. I clearly left too early and was readmitted to the ICU once again.
Now the real odyssey began.
June 12-July 7: Descent Into Hell and Back
Many chaotic things were happening to my body simultaneously. One reason why I felt so strange was that I was losing blood and required periodic blood transfusions as my blood count stabilized and then decreased. At this point I had to confront my greatest fears: twin invasive procedures, a tracheostomy and a feeding tube. My neurologist and pulmonologist suggested them prior to my medical crises. Both emphasized the benefits and risks of the procedures and how they would prolong and increase the quality of my life. Intellectually I knew these interventions were logical and inevitable. This was the next iteration of my cyborg existence. I also had deep concerns and reservations. Both require sedation and with my respiratory failure I had little reserve and was at risk for increased weakness afterward. I was haunted by my last major surgery as a teenager, a spinal fusion, that resulted in complications and a 6 week stay in the ICU when I was 14. It was a devastating turning point in my life which left me with pain and trauma for years. Strangely, I wrote a chapter about this experience in my memoir and here I was in the ICU again during the summer about to go through two frightening procedures that will alter my body permanently.
I resisted both because it’s so easy for doctors to recommend these interventions but it’s left to the individual to live with them and all the logistical, bureaucratic, physical, and emotional consequences. I knew it would decrease my ease of movement and increase my care needs. My lifestyle was complicated enough but now the burden and responsibilities were going to be exponentially greater.
Blood and Food
The gastroenterologists (GI) were very concerned about my bleeding and began to push me to go through an endoscopy. They mentioned it could be nothing and the bleeding could stop spontaneously or the bleeding could be serious requiring surgery. Surgery? That just freaked me the hell out on top of the upcoming procedures I will be having with sedation. After three blood transfusions, I advocated for a wait-and-see approach because while potentially serious, breathing and eating were my two main priorities. I was willing to take the risk and the GI team was not feeling it. I could tell there was tension between them and other teams overseeing my care. They eventually discontinued their service and left me alone. So, fuck ‘em for not listening to me and pressuring me into something I wasn’t ready for.
The nasogastric tube was not cutting it. I was put on TPN (total parenteral nutrition), a form of nutrition that is delivered through the vein versus the stomach or small intestine (enteral nutrition). This was a stopgap measure until I was strong enough for a feeding tube to be placed but I tried to advocate for TPN for long-term usage. Many doctors and nurses advised against it saying there were many more risks of infections as TPN had sugar and fungus could grow in the bloodstream. I thought it would be easier to receive TPN at home but was convinced otherwise.
With all of the IV fluids and blood draws, I had a midline catheter placed in my upper arm on June 15th and then it was decided a PICC line was necessary for the TPN and other fluids and meds which required another procedure in interventional radiology (IR) on the 17th. I started to react to IR the way a cat freaks out on the way to the vet. I did not like going there despite their competence. Like, really?!? Why couldn’t we have just gone with the PICC line in the first place?
During my second hospitalization, the nutritionist agreed to order Liquid Hope to see if I could tolerate it once my feeding tube was placed. Like my tracheostomy, the medical team agreed that I needed a slow, deliberate approach adjusting to both. I didn’t want to leave the hospital prematurely like last time. The food would be pumped in very low amounts over weeks so that my body could get used to it. This was the way. This should always be the way for my fragile body with such low reserves.
Anxiety and Sleep
In the lead up to my tracheostomy and feeding tube procedures, scheduled days apart, I did not sleep. It wasn’t solely because of the lights, sounds, and constant prodding and poking while in the ICU. I could not sleep because I was afraid I would not wake up. Waves of anxiety kept me up with my mind and heart racing. I hallucinated hearing things outside of my room in the darkness. One time my sister Emily got in bed with me (a nurse encouraged her) and tried to calm me down. I thought I imagined that but she confirmed it really happened. Another time I woke up and asked Emily where everyone was. I thought I was in an episode of The Twilight Zone where everyone disappeared on the floor.
I also had major problems with the bed I was on. I tried three different types of beds the hospital had available but even with all the pillows, turning, and adjustments, I was in physical pain. I could not sleep despite the best efforts until they gave me some medication to help me relax.
I always had a fear of drowning and was haunted by the diagnosis of ‘respiratory failure.’ The tight full-face masks that were used in the early part of my hospitalization only exacerbated the sensation of suffocation. The humidifier they used created hot moist air and it felt oppressive and unbearable. I also feared what would happen if my vent malfunctioned or my trach popped out once I got home. An old friend of mine died because her ventilator alarm went off and no one heard it until it was too late.
All the scenarios of what could go wrong ran through my head of this future life with a hole in my throat. My sister Grace brought a Korean face mask for me to try during a rare uneventful moment one day. The minute she placed it over my face I freaked out and told her to take it off immediately. It brought me back to my childhood memory in the operating room when an anesthesiologist placed a large black mask over my nose. This is one fear that will stay with me forever.
Another fear that emerged is not being able to speak and be understood. After my tracheostomy I communicated by gestures, facial expressions, and writing in my tiger journal. It is not easy to write while flat in bed! And yet, my sisters were able to read my lips and scribbles. To alert people, my sister Emily brought a device that I already used in my bedroom at home. It’s a button that I could clip on my pillow and it makes a loud DING DONG sound with a receiver plugged into an outlet. This button gave me a small sense of security.
Family and Support
I am the oldest of three girls. The bossy boss. As the oldest and only disabled sibling, my entire family has shown up for me time and time again. I would not be where I am today because of them.
My sisters, Emily and Grace, spent everyday by my bedside the same way my parents did when I was 14 and spent 6 weeks in the ICU for my spinal fusion. They took turns spending 24-hour shifts going back and forth from home to hospital. The ICU had a separate lounge for visitors but they stayed in my room sleeping in a chair. The ICU did not provide cots, only chairs so they slept sitting down or by chance if they got a second chair they slept with their legs raised. Emily and Grace helped me when I was unable to speak, translating my scribbles from my tiger journal with questions for the doctors every time they made their morning rounds or let the nurses know when something was wrong.
They watched me like a hawk and saved my life more than once. One of the most scary incidents happened when I sat up in my wheelchair with my trach and Emily was facing me. I felt something funny in my face and she saw the look in my eye that something was terribly wrong. Within 2 minutes the lower part of my face began to swell. Emily alerted the nurse and she immediately called several doctors and they paged the ENT (ears, nose, and throat doctor). They moved me back to bed surrounded and assessed me. They rushed me for a CT scan to rule out anything serious. It ended up that I had a rare instance of facial crepitus, air from my trach became trapped in tissues beneath the skin. My trach was adjusted and eventually the air naturally dissipated from my skin, but holy shit that was one freaky incident that shocked both me and the doctors. Almost everyday something went awry with my body but this one was a fucking doozy.
In preparation for life at home, the nurses and respiratory therapists trained both sisters to the point where they joked that Emily and Grace could be nurses. The nurses shared their tips and expertise, giving them hands-on experience with supervision. The nurses and the RTs also looked out for my sisters. When I was having an acute episode and a bunch of doctors rushed in my room, my two sisters were left outside crying. A respiratory therapist comforted them and told them I would be ok. Near the end of my stay the RT made a point to check in on how we were doing even though he wasn’t working on my floor.
Due to a 2-person visitor policy, my parents were unable to visit me the entire duration of my stay. They were worried sick about me and missed me dearly. Thankfully my dad returned home after his quarantine and they supported my sisters by cooking delicious meals and driving them to and from the hospital. This blog post is dedicated to my sisters Emily and Grace. They put 2 months of their summer on hold to care for me during and after my hospitalization. One sister managed to take calls and work from my room while the other postponed the start of her new job. The sacrifices they made were extraordinary and all the healthcare providers commented on their dedication and vigilance.
Suction me baby one more time
It’s strange to have two new holes in my body, one in my stomach and one in my throat. They are like alien eggs nesting in my tissue–foreign, unpredictable, and sentient. Tubing and pieces of plastic protruding and sticking inside of these holes cause a whole assortment of new sensations and issues. These “invaders” produce responses such as secretions from my trach. Suctioning my secretions is one of my primary daily activities. A narrow suction catheter is inserted down into my trachea that is attached to a suction machine. Nothing feels better than being able to breathe clearly after a suction. The problem is my lungs keep producing secretions. Even after two months, healthcare providers keep telling me this is normal as my body is still getting used to having a plastic object inside my throat. When secretions begin to build from the lower part of my lung to higher up the lobes, the wheezy rattling wet sounds grow louder and louder each time I inhale and exhale, like a wet broken accordion.
I have to tuck a towel under my shirt because my chest would drip from the secretions coming out of my stoma (the hole in my throat) every time I coughed or was suctioned. Every day I would have to change my soaked towel and shirt several times.
One night in the ICU a nurse suctioned me but she jammed the suction catheter in fast and hard. Grace and I were horrified to see a bright large spray of red blood splatter inside the long suction tube hanging by my side. The next day the blood dried to dark rust and the tube remained in my line of sight, a reminder of that painful incident. If the suction catheter goes in too deep, it can irritate and damage the lung and trachea. Afterward, I requested only RTs suction me.
Secretions are always in my face–I hear them, I feel them, they keep me from sleeping and breathing clearly. When I was still in the ICU I tried a new machine to help me clear these suckers: a Cough Assist. The machine has a tube that connects directly to my trach and I receive a series of breaths with extra pressure each time I exhale forcing me to cough these buggers out. The first time I tried it a huge blood clot came out. I suspected it was from the recent bleed. I immediately requested my doctors order this machine along with a nebulizer so that I can have these treatments at home.
Every morning and night I have both treatments to help loosen my secretions and open up my lungs. I continue to need to suction often despite the warning from some RTs to not over suction. Jackie, the RT who trained my sisters, said if you need it, you need it and I am following her philosophy.
Healthcare is supposed to be person-centered, right? My discharge process was not by any means. The discharge planner assigned to me did the best he could but my sisters could tell he had a lot of patients in his caseload. Emily called almost everyday with questions and to check if he got the orders from my doctors for my respiratory care DME (durable medical equipment) company and other new DME providers.
My doctors cleared me to leave on Thursday, June 30th and I thought everything was lined up with the DME provider for what I was supposed to have at home. The morning of that day a doctor told me the DME provider did not have my machines or an RT available and that because it was the holiday weekend, I would have to stay at the ICU until next week. I was crushed along with my sisters who were near exhaustion and could not sustain more 24-hour shifts in the hospital with me. The doctor was incredibly apologetic saying he and everyone involved tried to find a solution with the DME provider but it was their company policy. Perhaps it was a combination of supply chain and workforce issues but somewhere somehow there was a breakdown in communication and I was the last to know.
As a bonus fuck you, I learned that the DME required one of their RTs to come to the hospital and give a 3-hour training with my new BiPAP machine to my sisters and the EARLIEST the RT could come was July 6th. On top of that, the company required that I stay another day with their machine at the hospital to ensure the settings were correct. I ended up staying an entire extra week at the ICU, at a significant cost to the healthcare system and my own well-being.
On the 7th of July I was beyond ready to go. My IVs and PICC line were removed, I changed into real clothes, and I got out of my bed and into my wheelchair. And then the discharge planner called to say the DME provider had concerns and did not advise me to leave.
On speaker mode, my sister called one of the head people at the DME provider to find out what was going on. Even though my sisters had the training, we had the 2 machines from them, and I was already monitored 24 hours with them, it wasn’t enough. The company wanted an RT to meet me at my home upon discharge to assist with the transition but no one was available. We told him we felt confident that we could manage as my sisters spent weeks learning from nurses and RTs in the ICU. He tried to scare us by saying if I was released before the weekend if something happened to me the company’s RTs would not be able to assist them. He wanted me to stay another 3 days until Monday, July 11th. He didn’t blame the discharge planner but he said communication broke down between them. I blame everyone for causing me distress and frustration.
I spent a few hours that afternoon contemplating my choices. I never went home with a trach before and there were a lot of things that could potentially happen. A nurse I talked with about this bullshit situation surmised that this was a liability issue and that the DME provider didn’t want me to come home with their machines before their RT gave an ok. Another discharge planner added that if I left against the DME company’s policy that there was a small chance that they would charge me the full cost of the equipment because they might not be able to bill insurance without their clearance. I’m like, “What the fuck?” This was all about money and bureaucracy and it put me in an untenable situation. Four whole weeks. I still felt vulnerable but I knew my sisters had my back. I decided to go home. Fuck capitalism. Fuck the medical industrial complex. Fuck ableism.
On a related note, it took nearly dying for me to receive a new model of BiPAP machine, the Trilogy Evo (one for my bedroom, one for use on my wheelchair during the day) as the one I used for many years, the Trilogy 100, was part of a massive recall by Philips Respironics including a number of other ventilators and CPAP machines. Is the best way to describe these circumstances tragic, ironic, bittersweet? I can’t put my finger on it but I know it is unjust.
There’s a lot I can take–just ask my family members and friends. I knew that my life had irrevocably changed and that I would need a significantly higher level of care. In the weeks leading up to discharge we asked the discharge planner for resources and referrals to agencies that might be able to help us. Despite my sisters’ best attempts to arrange additional home care for me before I left, we faced the prospect that they would need to continue to care for me while we kept searching. This was not the ideal situation but it’s most likely the case for anyone who is on Medi-Cal (Medicaid in California) like me. The safety net is not a net! It’s a big fucking hole.
We updated the discharge planner and on speaker phone he said to my sisters and me (paraphrase): “With patients like your sister [with her type of insurance coverage] their only options are to have family provide support 24/7 or to move to a sub-acute facility. The closest one in your area is in South San Francisco and there is another one in San Jose…” I fell into a tailspin of doubt, fear, and guilt once he uttered those words. My family for my entire life has done everything humanly possible to keep me safe. I am someone who has a modest income and rich in community ties, education, and other forms of privilege. And yet, it wasn’t enough. I asked my sisters whether we should consider this possibility. As I thought more and more about it my eyes welled up, tears spilling down. It was the only time I cried in the hospital.
Maybe it would be better for everyone. The options to live at home are potentially fraught and unsustainable. Emily and Grace shut down my question immediately. Like we always do, we were going to figure it out. And we did at considerable financial and personal cost. I never want to feel so powerless again. The discharge planner’s comments reaffirmed my commitment as a disability justice activist because no one should live in cages and everyone deserves to have their needs met and cared for in the community.
Another example of ableism is how poorly community-based services are funded and valued in the United States. My sisters and I knew we needed more help at home and a friend referred us to a nursing concierge service. The person Emily spoke with said she could help us find, hire, and train people. I informed her of the services I needed and my date of discharge. Several days before she informed us the level of care I needed required licensed caregivers and that she could not hire them on our behalf and that agencies would probably charge $50 or more for professionals such as LVNs (licensed vocational nurses). I thought everything was all set, giving me a small sliver of comfort but nope.
We had to start over again and with the help of my friends, we received multiple referrals to individual attendants and registries. My parents, who are my primary paid caregivers through two programs, could not manage everything once my sisters resumed their regular lives. Two people are not enough to help me 24/7 with my intensive and frequent needs. To supplement my care, my parents ended up paying out-of-pocket for a team of caregivers. We tried to find people who were participants in the same home care program as my parents but the paltry $18/hour rate made it difficult to find people for the hours I need and the tasks I need help with. The system drives people toward institutions. It is designed to segregate expendable and ‘non-productive’ disabled and older people like me. Out of sight, out of mind.
Current and Future State
My body is not my body. My room is not my room.
So much to process but I am alive and doing my best. So many fluids leaking out of my body! Saliva, mucus, urine, poop! So many devices spilling out of my bedroom, bathroom, and living room. So many parts and supplies that need to be replaced, washed, changed, re-ordered, and cleaned. So many caregivers to train and work with. So many medical appointments and symptoms to watch for. So many logistical and administrative tasks requiring a high mental load.
Recovery can be as difficult as a hospitalization. Here are a few examples of what I’m dealing with now:
- Bladder and bowel incontinence
- Pressure sores
- Wound care
- Tube feeding and flushing
- Suctioning and trach care
- Skin care
- Sleeping problems
- Muscle pain
My sisters cleaned out my closet and bought two rolling carts to accommodate all the machines and supplies I use in my daily routine. Many things I needed after I got home were either not the right fit, out of reach, or non-existent. When I read Laura Mauldin’s recent piece in Baffler Magazine, “Care Tactics,” I identified with the numerous accounts of the ways disabled people and caregivers use their ingenuity to create solutions within a hostile and inaccessible environment. Our community is rich in wisdom and knowledge and I will eventually find my way.
I am only beginning to recover and heal. Rest and peace is elusive. I am stable but I am not ‘right.’ Going forward is the only way but I miss not being able to smell, speak, eat, or move as I once used to. My muscles have deconditioned and I am trying to be able to type, text, and hold things as I used to. I am no longer able to be transferred by the stand-and-pivot method and my family had to pay for the MoLift Smart 150, a mechanical lift for caregivers to safely move me around. The one that Medi-Cal covers is a standard Hoyer lift which is too large for my bedroom. My family also had to buy a new hospital bed because my current one is not height adjustable. The caregivers who are working for me now have to bend over frequently, causing strain and fatigue. It is expensive to be disabled.
I have a lot of work ahead. To communicate I am currently using Proloquo4text on my iPhone, a text to speech app, and the accessibility feature on my MacBook where I highlight text, press ESC and OPTION for text to speech. A friend made an email introduction to someone from Communication First, an organization I will contact when I am ready.
I miss smelling things as I can no longer inhale from my nose. Onions slowly caramelizing in a pan of bubbling butter, fresh lemons, brewed coffee, sizzling bacon, cakes and cookies baking in the oven.
I dearly miss tasting and eating food. The doctors advised me to wait a few months before exploring the possibility of swallowing liquids and soft foods again. See you in my dreams, French fries, roast duck, lattes, and ice cream.
I have suffered many losses but I still have a deep capacity for joy and pleasure.
Slowly, I am poking my head outdoors, soaking up the sun, and appreciating every single breath. I cannot imagine what my life will be like next summer but I am going to take my time like a snail and feel my way toward the future. Bye for now, bitches.