My Corona Diary – Hospitalization.Posted: April 23, 2020 | |
My Corona Diary was getting a bit long, and was nowhere near over, so I decided to break it off just before I was going back to the hospital for the third and fourth time.
You can find the first part of My Corona Diary here.
You can find the third part of My Corona Diary here.
FYI, all measurements are Dutch/European. My normal body temperature is 36.5 Celsius. Normal glucose levels are between 5-8 mmol/l. Normal blood pressure for me ought to be 129/85, but I usually have 135/90.
(April 16th) It’s past midnight. Thursday is garbage collection day, so I carry my garbage bag through the courtyard to the gate where I add my bag to the garbage heap, then empty my mailbox and walk back. The night air is cold but fresh. I don’t return straight to my house, but walk unsteadily around the deserted courtyard, my cane ready to support me should I lose my balance. It’s ridiculous how infirm I feel, like an asthmatic old man, panting from the exertion of strolling around this courtyard. I feel so weak I feel like crying, but I will not wallow in self-pity.
I go back inside, feeling tired but not sleepy. I sink in my chair, gathering strength to climb the stairs to my bathroom and bedroom. I’ve been sick for four weeks now. Four exhausting weeks. And my convalescence might take another two weeks. I remember how the first reports were that for most people, getting corona would be like the flu. How wrong they were. This is nothing like the flu. It’s a prolonged battle against a mercurial virus and for many people surviving corona is a toss of the coin. Some will win and live on. Many will lose and die. Please, please, if you read this, don’t think too lightly about this. And hug your loved ones. My heart aches at the thought that I haven’t been able to hug my children for four-and-a-half weeks. I have to stop thinking about this, or I might lose my composure. Good night, everyone.
I got up around eight. Temperature was 36.8, glucose was 8.8, and my weight went down to 98.1. I felt weak and exhausted, skipped breakfast and just took a banana with my medication. Around eleven, the postman dropped off a package with my saturation meter. At first it didn’t seem to work, but it turned out that there was still some plastic around one of the battery poles. After fixing that I could measure my saturation, which hovered around 89%. No wonder I was so tired.
With effort I managed to get it up to 92-93% if I sat real still in my chair. I called my GP to be put on the call list. She called me back around 13.00 hours and conferred about my measurements with the lung doctor at OLVG. She called me back and told me an ambulance was on the way to take me back to OLVG.
I couldn’t keep it together. I was crying with despair, calling my ex to tell her I had to go back to the hospital for the third time, while I was throwing stuff in an overnight bag again. I just couldn’t take this anymore. Four fucking weeks of laborious breathing, fevers, being prodded and tested, bloodclotting in my nose from the oxygen, and being so tired, so tired.
The ambulance took me to OLVG again and I was put into a separate room again. Got another IV tap in my arm, vials of blood taken and a painful needle rooting around in my right wrist again to draw blood from my arteries to check the oxygenated blood.
I took my cannabis while I waited, listening to music from my iPad, trying to stay calm and keep my composure. I had forgotten my water bottle again, but this time I knew to ask for a carafe of water. The battery of tests continued.Again big machines were wheeled into the tiny room to make a heart scan, then another lung photo.
Around 16.00 hours I told the nurse I needed to eat and take a 850mg Metformin. She gave me two sandwiches with cheese and my pill. Not only is my appetite at an all-time low, but the tasty sandwiches tasted like cardboard. I worked them down and took my pill.
The lung doctor came and told me that my lungs looked better than April 10, and my heart was strong and beating well. The saturation was a problem, but like he said, COPD patients regularly have lower saturation levels (70-80%) when active, and the important thing was to take a lot of rest and get the saturation levels back up. I told him that if I wasn’t in danger, I preferred to recuperate at home. He conferred with another lung doctor and agreed that I could stay at home, but I had to warn if my saturation dropped to 80% or if I wasn’t able to get it back up to 92% at rest. He complimented me on my fortitude, struggling for breath for weeks now, and told me to hang in there.
We also talked about being contagious. He told me the dyspnea would take several weeks to clear up, but if I didn’t cough for 24 hours, I could get out of quarantaine and hug my kids again.
However, since I was still coughing a few times a day, I was transported home by ambulance, not by taxi. The nurse who strapped me in, asked me how I was doing. I told him I was pretty much at the end of my tether, being sick since March 18th. When he joined the driver in the cabin of the ambulance, I heard him tell the driver that I was sick for a whole month and the driver looked at me with a look filled with pity.
Back at home I sat in my chair and tried to get my saturation back up from 85%, but it wouldn’t go higher than 88%, even with cannabis. I looked at my arm, bruised from the needles and wept.
I went to bed, too tired to think about dinner, but I took a banana and two muesli sandwiches up to my bedroom. Too exhausted to undress, I crawled into my bed and tried to rest, but couldn’t breathe deeply. Not on my back, and certainly not on my sides. I remembered reading an article about turning dyspnea patients on their bellies to easy breathing, so I put my memory foam pillow under my chest and laid down with my forehead on my pillow, creating a gap for my face so I could breath. That did make breathing easier, but I couldn’t sleep and my saturation remained below 90%. Around 21.30 hours I was roused from my slumber by an alarm to vape cannabis, but my vapes were downstairs. I ate the banana and took Metformin, struggled out of my clothes and tried to sleep.
(April 17th) I woke at 04.45 hours, my heart racing, gasping for breath. I couldn’t get back to sleep, sat for a while meditating to get my heart rate down. Saturation meter showed 85-87%. I put on my bathrobe and went downstairs, where I vaped cannabis and watched Blade Runner 2049 to distract myself from the dyspnea. Around 06.30 hours I felt a bit calmer and went back upstairs again, where I slept until 08.30 hours.
I got up, skipped the shower and measuring glucose, but I did weigh myself at 97.2kg. Dressed myself, then sat for a while getting my breath back and went downstairs, where I sat in my chair for 20 minutes before I had the energy to make tea and yoghurt with muesli. I had to force myself to eat, I need the energy and I had to take my meds, but after five or six spoons of the muesli I just couldn’t eat any more.
I opened the window for fresh air, but my legs got too cold, so I put on my lined HH pants to keep my legs warm. Saturation still low, but maybe it will improve as the day progresses.
I managed to finish my bowl of muesli, but felt awful weak. A friend got me a microwave steamer meal, but my appetite was nowhere to be found. I wanted to steam with camomile but when I went upstairs for a towel, my heart was racing when I came back downstairs and my saturation dropped to 75%.
Steaming didn’t really help that much. Around 20.00 hours I went to the toilet and felt warm, so I took my temperature, which was 38.0C. Fever again. I took two Saridon and decided to call the huisartsenpost. They sent a GP, who conferred with a lung doctor, so I had to go back to the hospital again.
They took another Thorax X-ray and took more blood. The doctors are worried about my inability to sustain saturation levels, so I have to stay the weekend and then they’ll decide how to handle my convalescence. At least, an oxygen tank at home is now an option.
(April 18th) Someone was supposed to get me to transport me from the ER to C6, where there’d be a bed for me. At 3.00 hours in the morning, one of the ER nurses decided to take me upstairs. I told the staff at C6 that I had to vape cannabis in the morning, but they had to put me in a four-bed ward and told me they’d sort me out in the morning on how and where I could vape.
Despite my exhaustion, I couldn’t sleep. The other three occupants, an elderly man and two elderly women, were noisy all night. The elderly lady next to me started crying because she had to pee so bad, then when the nurse came to turn the lights on and put a bedpan under her, she couldn’t pee. This happened three times between half past four and six in the morning. And the elderly woman across from me couldn’t sleep either and was constantly asking plaintively what was going on and what the red button was for. The elderly man was just groaning and coughing up phlegm all night. On top of that my nose was getting severely irritated by the oxygen blowing in. I’m not complaining though, as I doubt I would’ve been able to sleep at home with the dyspnea I was experiencing without oxygen.
At six-thirty in the morning the night shift came to take blood pressure, temperature, and saturation, then the morning shift came and I had to go to the toilet. Since that wasn’t an option, I had to go on the ‘stool’ with a removable bedpan. I was luckily prepared with moist toilet paper, because they forgot to give me any. Defecating turned out to be such an exertion that I started coughing bad enough to feel nausea. I wiped myself and crawled back into bed, thinking I was going to throw up. My nausea subsided when my heart stopped racing, but when they came to remove the bedpan stool, I asked them for some receptacle for vomit, in case I had this again.
After breakfast and medication, the staff conferred on how to provide a space for me to vape cannabis, and they decided to move me to an enormous single room with another brilliant view of Amsterdam South.
Again, vaping cannabis turned out to be a salvation, or I wouldn’t have received such a wonderful room to recuperate from my ordeal.
In the afternoon, the nurse came in with ‘bad news’. For a moment I was afraid they would take my room again, but it turned out she wanted to do another Corona test swab, which involves sticking a long wattenstaafje (Q-tip) deep into my nose and another one deep into my throat. Her reason was that the doctor asked for it, because ‘something had gone wrong at Amsterdam Medical Center (AMC, another hospital)’ and they wanted to do the test again. Since my nose is clotting with blood from the oxygen supply and my throat is sore from coughing, I told her that I needed a better reason for doing the test again. After all, as reported before, both my huisarts and the GGD told me the test wouldn’t be reliable after I’d been sick for so long and the test they performed on April 10th turned out negative, only for the CT-scan to prove that I had corona. The nurse seemed a bit miffed about my non-compliance, but understood my reasoning, so the doctor will have to explain why he wants the test. And what the results would mean – was a positive a sign of re-infection? Was a negative a sign I wasn’t contagious anymore? As no doctor appeared for the rest of the day, I assumed there was no urgency to re-test me.
I was reading on my e-reader around seven in the evening when it signaled the battery was going low and I found I didn’t bring a micro-usb charger. Luckily Terrence had a charger and Annemiek jumped on her bicycle to bring it to the hospital – another show of how great my friends are in my time of need.
Since I had problems with blood clots in my nose, the nurse put a water bubbler between the oxygen tap and my tube. I immediately noticed the smoother air, but the bubbler sounds like a noisy aquarium filter system, so it took me some time to get used to it. I was in-and-out of sleep, then roused at three for a check-up, after which I slept again, fitfully.
(April 19th) Woken around 06.30 for another check-up by the night shift, and I heard her say my blood pressure was close to normal. So is my high blood pressure perhaps also a symptom of my diabetes or corona?
I looked out the window at the sun rising over Amsterdam.
I don’t have a proper toilet, but I have to go on the bedpan stool.
However, since I noticed how they changed the bedpan, I took out the bedpan and put it at the door, so the nurses don’t have to suit up just change my bedpans.
Also, I weighed myself today and I’m at 96.8kg. Despite three meals a day, I’m still shedding weight. I asked for a towel, so I can wash my face at the basin, but just brushing my teeth after breakfast was so exhausting that I’ll rest for a while before I’ll over-exert myself.
Since my hospital stay might be longer than expected, due to the oxygen saturation in my blood not getting much better, I asked my friend Alf to go to my house to get me my vitamins and my writing materials so I can continue writing the draft for DRONE.
I feel fortunate having such good friends and neighbors to help me through this ordeal. Now with my typewriter in my room, I don’t feel so useless. At least now I can continue my work, whenever I have the energy to do so.
(April 20th) I had a good night’s rest and got up at 06.30, after the 6 o’clock check up (I joked with a friend about being in hospital confinement is a bit like being in a very friendly and benign prison), because I knew I wouldn’t be able to sleep and my eye was seeing better. Before breakfast, I wrote two pages on the DRONE draft.
After breakfast I spoke with the nurse about getting an eye-wash bottle (like they use for first aid in situations with chemicals), so I could clean my eyes. The screen of my phone was covered with a light film of dust, blown into the room by the closed air conditioning system. Of course the screens of electronic equipment attract more dust, but I have no doubt the burning sensation in my eyes is part dehydration, part dust and debris.
Having my Kolibri waiting for me at the table gives me a lot more energy to face the long dreary day. At least I can express myself creatively instead of surfing the web or passively watching movies.
Just had a talk with the lung doctor. They want to PCR test me again (the test where they sample the back of your nose and throat), because the CT Scan shows that I have two lung issues – one of the issues is a viral infection which could (considering the pandemic and my own symptoms) very well be COVID-19 (which is why I was marked CO-RADS-4); but the other issue is something called RBILD, which is a smoker’s disease. I don’t smoke, but I do vape cannabis and according to the lung doctor, the slight RBILD could be a result from vaping anything (including e-cigarettes). The RBILD would disappear after I stop vaping, but for now I just have to continue vaping cannabis, as there is no better alternative. However, it’s interesting enough that after I’m recovered, I will become a lung patient at the OLVG, requiring regular tests and scans to see whether the RBILD becomes a problem. Right now, it’s not problematically present and the presence might have been exacerbated by the viral infection, COVID-19 or otherwise, but that’s the reason they need another nose and throat swab to test for the rarer lung diseases that might have caused the viral infection.
Uh oh. Just found out why this former Psychiatric Ward is now used for Corona patients. The nurse (a surgery nurse who has just begun working again after surviving Corona) told me that the C6 ward is reserved for palliative corona care – patients who are sure to die and who will not (or want not) to receive Intensive Care, but are made as comfortable as possible. Since this ward has three badge-controlled doors dividing the ward in different sections, it’s easier to allow visitors to visit their dying relatives, and easier to put a security guard at the outer door to prevent unauthorized persons to enter the ward. And since I told them I absolutely do not want to be intubated or reanimated, I’m right at home here. Except that I’m not dying. Which explains the extremely friendly personnel and why they like taking care of me, the sole non-dying patient….
Being in a hospital feels a bit like a writer’s retreat – basically, writing is pretty much all I can do here, so I drafted seven new pages for DRONE.
I hope tomorrow will again be a productive day of writing.
(April 21st) Again an early morning – after the 06.30 check-up, getting back to sleep is pretty hard, so I got up and started my day. Like yesterday, the weather was bright and sunny, like the world pestering me with my forced isolation. How I would relish just walking around in the sunshine…
I put these thoughts aside, as one has to accept that which cannot be changed. After checking through my social media and emails, I started typing a scene that was difficult to write and kept me busy for several hours, interspersed with breakfast, check-ups, and lunch.
Out of the blue, my daughter Nica called me in a video chat, asking if she could move back to Amsterdam if/when the schools started in May. I had to disappoint her – I’d probably still be too weak to be home and care for two kids. But we had a long, very pleasant chat, and I felt glad that she called.
I had some other phone calls to make, one with a friend who’s an expert on technology related things. I had written a scene involving the detection of a USB stick with a hidden tracking device, and my scene was sound, except for some minor details I can easily resolve in the editing stage.
I had also written a poem, which I photographed on the Kolibri.
I had a conference with the lung doctor, who told me he’d put in a transfer from the hospital to a nursing home, where I could be nursed back to health, as returning home in my condition is not an option.
A little later I was called by the transfer-nurse, who told me that the nursing home would be in the Amsterdam area and would be a single room, like I have now at the hospital, but it might have a window I can open (also handy with vaping cannabis), which the hospital doesn’t have. Might help with the low moisture content in my room dehydrating me. Transfer could be as early as tomorrow or the day after.
(April 22nd) I had a good night’s sleep, because the night shift decided not to wake me at 3 in the morning for the check-up, since my levels didn’t fluctuate that much. So I got my 6 o’clock check up and slept until 8 o’clock.
Today I will learn about my transfer. Looking forward to showering and having a normal toilet again, instead of washing myself with Swash single-use soapy washcloths and defecating on a bedpan chair. I feel a bit like some scaly reptile dehydrating in an aquarium, haha. I’m constantly draining half-liter bottles of mineral water, some 8 bottles a day, but that’s no wonder with kidney stones, diabetes and cottonmouth from cannabis. So, I’m also hoping I get a room where I can open a window to let some fresh air in.
Just had another conversation with the lung doctor. The transfer to a nursing facility seems like a bad option. I’ve had a severe infection of my respiratory system, which could very well be COVID-19, but they cannot say that for the full 100%. So, if I go to a corona nursing ward and my lung infection was something else, I’m liable to contract COVID-19 on top of my current dyspnea problems. And if I go to a regular nursing facility and I do have COVID-19, I’m liable to infect the other patients.
However, the room I’m currently occupying is in demand for palliative care patients, so I have to be moved.
The plan now is that I’m going to be moved to the Lung ward on the eight floor, where I will be housed in a single room like this one, and where I will be weaned from the oxygen. And the expectation is to discharge me on Friday if I can manage without extra oxygen, and supply me at home with home care to take on the more exhausting tasks like cooking, washing dishes, vacuuming the house, changing the bedsheets and doing laundry.
And check that on a weekly basis to slowly become more and more active in these household chores. Regaining my former condition and stamina will most likely take months, as I basically had double pneumonia, and regaining full lung capacity is a slow and arduous process.
So, I’ve been transferred to a single room on ward B8 for lung diseases, and my oxygen has been lowered from 4 liters to 1 liter. Quite a step back, but the room is fine. Same general size as the one I occupied on B7 on April 10-12, with my own toilet and shower stall.
With a table in the corner I can set up for my writing.
Of course, the view more limited because the windows are quite small, but it’s still magnificent.
So now I’m going to trim my beard and take a long shower, which I think will make me feel much better. And the ability to relieve myself on a regular toilet should not be underestimated.
Interesting developments. After this active day – packing up all my stuff, getting transferred, unpacking all my stuff, taking a shower without extra oxygen – I noticed that I didn’t feel well. My energy was low, I was drowsy, and I noticed I started making mistakes while writing on the typewriter. Something was definitely off, so I called the nurse on the phone and Hilde responded weird. She told me that if that happened, I should’ve used the red button earlier. However, she told me to up the oxygen to 2 liters and she’d be by later for the check-ups and would check on my oxygen then.
When she came by later for the checks and asked me about my dyspnea, I told her that maybe the ’cutting down on oxygen’ wasn’t going as gradual as the lung doctor had prescribed and that I was at the ward to build up my depleted reserves or I wouldn’t be able to go home on Friday afternoon.
”As far as my dyspnea was concerned,” Hilde said disapprovingly, “maybe that’s just the toll I have to pay for smoking cannabis…”
And I realised, this woman was punishing me for doing something one shouldn’t be doing on a lung ward. Holding tight to my fudoshin in order not to become angry, I explained to her that I was not some pothead who was so addicted to weed that doctors allowed him to smoke on a lung ward. I explained to her that vaping medical cannabis, prescribed by the leading eye doctor of her hospital, was preventing damage to my one remaining eye, a medical necessity that the lung doctors understood and therefore allowed on the ward, a decision that wasn’t hers to judge. I showed her what vaporising cannabis entailed and the differences between vaping and smoking (and e-cigarettes), so she would be informed about why I ‘risked my health’ vaping cannabis, because the alternatives were worse.
Thankfully, I could see that she understood her mistake, and she brought me cappuccino and promised to make a note for her colleagues so they too understood that I wasn’t allowed to flout the rules of the ward, but was a patient with alternative medication.
So my oxygen stays at 2 liters now and won’t be halved until that feels OK to me. I’m happy I was alert enough to realise what was going on and to be able to explain the dilemma I’m in, having to vape cannabis while contributing to a slower healing process of my lungs. And explain it well enough to turn her antagonistic attitude around. However, this is also a warning for those who use alternative medicine – sometimes the medical profession’s ignorance and prejudice could result in an abuse of power. I shudder to think what attitude some of these nurses might have towards people who have a lung disease from decades of smoking. Will they tell them they should stop whining, because everybody knows smoking is bad for your health?
I know that a lot of doctors are also ignorant about medical cannabis use and the differences between smoking and vaping, but this prejudice can be dangerous. And I’m grateful my eye doctor was open to experimenting with alternative methods to prevent harm to my one remaining eye, and prescribe cannabis even though he didn’t have any experience with doing so. In view of the myopathy of so many medical ‘experts’, his openminded attitude is all the more impressive.
Later, when I tried to go to sleep, every time I went horizontal I got what felt like lung hiccups that prevented me from going to sleep. I had this same issue April 16th, when I couldn’t get to sleep either. So I rang the nightshift nurse and told him my problems and how I thought my oxygen had been decreased too drastically, so he upped my oxygen to three liters and we had a conversation where I expressed my frustration at being regarded a pothead who knowingly fucked up his lungs, whereas the RBILD was an unforeseen side effect of my medical cannabis use, which I couldn’t stop on account of risking blindness in my remaining eye. He was sympathetic and understanding and told me he would write down my explanation to go into my file, so the nurses wouldn’t see me as someone who was deliberately risking his health.
(April 23rd) I slept fitfull and was woken around 7 for my check-up. The hospital seems adamant about discharging me tomorrow afternoon, so they screwed the oxygen down to 1 liter, but I don’t feel positive about going home so soon. I should recuperate in a clinic, but that doesn’t seem to be an option. I called with my huisarts to arrange for help with household chores like cleaning my house, but I had to call that service myself, explained my situation and they’re looking for an emergency solution as a request for this usually takes some 6 weeks of administrative time before they can become active. And I don’t have six weeks.
The transfer nurse called me and cannot do much more for me that arrange a shower chair for me. They can maybe arrange a physiotherapist for me, but not much more. I just need to convalesce, but due to corona, no clinic will take me. Best thing really would be for me to stay here on the lung ward for another week, but the hospital wants me gone because I don’t need active medical care. And I don’t feel able to live alone without any assistance, not when I’m so short of breath that simply taking a shower is so exhausting that I have to sit down for ten minutes just to get my breath back.
My oxygen supply is taken off around ten in the morning. Meanwhile, I have to make calls all day to arrange help around the house and on top of that my Mighty vaporizer stops working. I call my neighbor Simone who goes into my house, gets my Plenty vaporizer and brings it over at 13.00 hours. So I learn at 13.35 hours, despite me asking the nursing staff to bring me the vaporizer as soon as it arrives, as I should’ve vaped at 10.00 hours. When I call they bring me the Plenty fifteen minutes later with the excuse that they were on their lunch break. I’m getting so sick of this, it feels like they’re pestering me, for some unknown reason.
Yesterday, I asked for new Optrex Eye Wash. They would arrange for it, but it wasn’t coming. Today I heard that they don’t have it and cannot arrange it. I call my own pharmacy, which has one bottle left. A friend will pick it up and get it to the ward. I ask him to write “URGENT” on the bag and tell me when he drops off the bottle. I tell one of the nursing staff that I arranged for a new bottle Optrex and ask him to bring it to me as soon as it comes in.
My friend drops off the package at 15.12 hours. I don’t say anything and wait how long it will take for them to bring me the package. After all, it’s marked Urgent, so they should bring it over right away, right? At 16.12 hours I call them and tell them an urgent package I’m waiting for has been delivered an hour ago and still hasn’t been brought to my room. They tell me they will check with security. Ten minutes later it’s delivered to my room. No excuses, nothing.
Evening falls and I cannot do much calling anymore, as the offices are closing. Why do they have to discharge me right before the weekend? When everything will take twice as long, since on weekends many business are closed in this pandemic town? But there is nothing I can do about it.
After my dinner, which I can hardly eat because I have no appetite, I put my saturation meter on my finger. 92% it says, falling sharply as I take my dinner tray and carry it six steps to the door and put it on the ground behind the door so the nurse can pick it up without having to don without having to put on all the protective gear.
When I walk back, my saturation has dropped to 79%. I turn on the stopwatch on my phone and do my breathing exercises to get my saturation level back up. It takes 9 minutes and 36 seconds before I hit 92%, the bare minimum.
After that I turn on my iPad and watch a movie, feeling myself getting more and more despondent. The dyspnea is back in full force and I notice I’m panting with exertion just watching a movie. I put on the saturation meter and it shows 88%. And I cannot be more at rest while awake, just sitting still in a chair watching a movie. I get up and walk to the bathroom. I walk back again and see the saturation dropping to 84%. Even with my breathing exercises, I cannot get it to go higher than 88%.
The nurse comes to check up on me and I tell her how I feel and that my saturation won’t get up to 92%. She checks my vitals and my blood pressure is up and my saturation hovers at 88%. No fever, nothing. She calls the doctor, who is on an emergency call, but tells her to measure again, now with putting the saturation clamp on my ear. We do this while I’m horizontal, because I tell her that when I’m horizontal my lungs cramp up. The measurements stay below 90, so she puts me back on the oxygen, setting it at 1 liter. I tell her that I think it’s an irresponsible action to discharge me when I feel like this. If only I could stay a few days longer, lift me over the weekend, and discharge me on Monday, when I might be able to arrange for someone to help me clean up my house….
I’ll try and get some sleep…
(April 24th) I went to bed around midnight, but as soon as I went horizontal, my lungs cramped up and I got into a vehement coughing bout that resulted in coughing up white sputum. The air supply was bothering me more than helping me, so the nurse hung it within reach and we put up the head of the bed to avoid me going fully horizontal. I managed to get to sleep and woke at seven with abdominal pain and backpain and a saturation of 83%. I went to the toilet at half past seven and when I got back in bed, I put on my saturation meter and monitored myself for half an hour, not getting my saturation higher than 85%.
The dayshift nurse put me back on 3 liter oxygen, which blew so hard into my nose that the blood clotting in my nose came back. After an hour with no appetite, I asked if I could lower it to 1.5 liters, because I was feeling worse instead of better. I have no appetite, but drank a protein drink and ate a banana. Trying to get a small bowl of yoghurt inside, but it’s hard when you feel more like throwing up.
The weird thing is that the Emergency doctors (including the lung doctor) didn’t want to let me go home on April 16th unless I could keep a saturation of 92% or above, but the lung doctor seems to want to discharge me while I cannot keep my saturation stable and over 85%. I’d feel a lot better about this if I could keep my saturation above 92% for 24 hours before being discharged.
Lo and behold, how things can turn around. Instead of Dr. Arrogant, the lung doctor who came to confer with me today turned out to be the same friendly doctor I met when I stayed at B7 from April 10-12.
I was literally flooded with relief, as he sat down and we could just speak about the situation and the options. I told him about how professional household help services wouldn’t help without a guarantee that I was no longer contagious and since the hospital couldn’t guarantee something like that, was it any wonder my own friends, family and neighbours didn’t dare risk exposure assisting me with household chores. We talked about how I had basically been hospitalized April 17th with unstable saturation and how nothing has really changed. I felt slightly better at C6 and started to recuperate, but my health deteriorated when I was transferred to the B8 and rushed into returning home. This friendly lung doctor told me that with my unstable saturation going home wasn’t an option now. And he would make contact with the revalidatiekliniek (recuperation facility) for a spot, because if I wasn’t contagious and needed 24/7 observation until my saturation stabilized, the revalidatiekliniek would be the ideal step to take before I could return home.
So, I’m not going home today but will stay over the weekend and we’ll decide after the weekend (probably Tuesday, because Monday is King’s Day national holiday) whether I have to go to a clinic or if I was fit enough to return home with extra care.
I’m still too nauseated to eat lunch, but I’m incredibly relieved that I can stay and rest. The difference a doctor makes….
Being much calmer, my stomach cramps came to rest and I could eat dinner. Later in the evening, I felt coughing coming up, so I sat at my desk with an empty cup, coughing up white sputum and spitting it into the cup. I knew that every bit of sputum I could lift out of my lungs and into the cup would give me more breathing capacity. It was hard work, my head felt like it would explode and I had to take paracetamol against the beginning headache. After some forty-five minutes of coughing, I filled about one-third of the cup with heavy sputum. Then I took my mind off by watching the movie Superbad on my iPad. After the movie I wrote another few pages of DRONE and went to bed, cranking up the headrest at an angle so I could breath easier.
(April 25th) The friendly nightshift nurse took my vitals around four and woke me again around six-thirty to measure my glucose. After that I drowsed, but couldn’t get to sleep anymore, so I leisurely arranged the chair near my bathroom so I could take a shower as comfortable as possible. It is such a relief to be able to shower that despite not being able to use my oxygen supply, I still showered probably twice as long as I do at home, just holding on the braces in the walls and enjoying the hot water massaging my back. The next best thing to getting a real massage…
The dayshift nurse was pleased that I was already up and sitting at my desk, freshly showered and ready for the day. After breakfast I turned back to my draft of DRONE, thinking up new scenes to write.
The main problem seems to be the incredibly low humidity in the room affecting both my breathing and my vision. My eye dehydrates faster than I can moisturise it and again my vision blurs and my eyes burn. In the end, without other options available, I took to running the cold shower with the bathroom door open in order to increase humidity in the room.
In the time that my vision was too blurred to read, I put on my sunglasses to shield my eyes from harsh light and sat at my desk trying to cough up as much slime from my lungs as I could, hoping that this would increase my lung capacity.
I spend a lot, maybe too much, time on social media and I notice a tendency of healthy people complaining about the quarantine. I get it, but you have to realize that your inability to socialize with friends in the neighborhood pub, go en masse to the beach, and enjoy the gym or the cinema, or go out to dinner is nothing compared to the inability to breathe properly, te be forced to live in a small room having not much choice what you eat or drink, to be woken at three in the morning to have your vitals tested, to spend your spare time coughing up slime from your lungs and to be tethered to an oxygen tube 24/7 which makes blood clots in your nose.
You can walk to the fridge and get a ginger beer. If you feel cooped up, you can open a window and breathe the soft spring air, heck, you can go for a stroll outside as long as you practice social distancing. You can exercise in your home. You can order delicious food, you can make your own coffee, you can still rule most of your own life.
I’m not complaining. I’m not wallowing in self-pity, even if I cried yesterday for missing my children. I still count my blessing of being recuperating. I may have dyspnea for months and that terrifies me, but at least I’m not intubated at the ICU. I’m being cared for, I’m being fed, I can shower again, I have my iPad and wifi to stay in touch with my loved ones, I have my typewriter and writing materials to continue with my books and poetry.
I count my blessings every day.
Maybe, when you feel self-pity for everything you‘re missing out on, think about those poor souls whose lives are in peril, who have no choice in the matter of how they live because the virus saps their strength and they have to be on medical machinery in order to not die. For now, I leave this poem I wrote today.
(April 26th) Woke up this morning with a stuffed nose and a mouth as dry as the Gobi desert. I turned on the cold shower in the bathroom to moisten the air in my room – the low humidity is wreaking havoc with my health. Not only my eyes burn, but my skin is flaky and my throat so dry I drink liters of water.
Since the idea is that I can go home when I can sustain a resting saturation of 92% without extra oxygen, I turned off the oxygen during breakfast and start measuring after I placed my tray outside the door to my room.
Sitting back down after that ‘exertion’, my saturation was down to 83% and took over ten minutes to slowly rise to briefly touch 92% before slipping down to 90% again.
Another try. I went to the toilet on the other side of the room. When I returned, I was panting and my saturation was 77%. For the next half hour I tried to get it back up to 92%, but I didn’t get it any higher than 88%.
So I put the oxygen back on, 2 liters for one hour, then 1 liter for the rest of the day.
I also want to write about something that occurred last Wednesday, when I was moved from the C6 palliative ward to the B8 lung ward.
Before I got installed in C6, staying in the four-bed ward with the elderly patients for one night and getting moved to a private room at the end of the hall the next morning, I didn’t know the ward was for palliative care. I only found out about 1-2 days later.
So last Wednesday, when I was moved from C6 to B8, I knew that most of the patients were dying. As I was moved out, I was parked temporarily near another single room while a palliative patient was being moved into my room. The single room I was parked next to housed an elderly man hooked up to an IV drip with (I suspect) morphine to make him comfortable. There was a big glass wall separating us.
I must’ve drawn his attention, the bearded pirate in the bed outside his room, and we locked eyes. I greeted him with a namaste and he slowly raised his right hand to about shoulder level before it sank back to the bed. His eyes remained on mine and I just couldn’t look away from his drugged but still inquisitive gaze. And I knew this man was dying.
Then the nurses came to take me away and as I moved away from him, I nodded to him and he nodded back.
The rest of that day was so intensive that I almost forgot about him, but I later that night when I went to sleep, his face appeared before me again and I wished I had been able to give him some comfort other than my mute sympathy.
Today, as I posted on Facebook about people complaining about not being able to get a haircut due to the pandemic isolation, his face appeared before me and I couldn’t hold it together. Here’s this poor man dying alone in a glass room, watching me in mute incomprehension, while outside this hospital people are whining about not being able to get their nails done or go to a ball game. And I feel bad for resenting them for their pettiness. I want to scream at them that people are dying and they worry about their fucking appearance. And I know that writing this isn’t going to change their minds or attitude, but I cannot forget his face and his eyes searching mine. I’ve seen some bad shit in my life. I’ve seen people dying, often unnecessary, so why does this man’s death affect me so much? Because I may have been the last of the regular people he has seen before he died? I hate that there was this glass wall between us, that I couldn’t have held his hand to comfort him.
All I can do is remember him, remember what is happening in hospitals all over the world because of this fucking pandemic.
People tell me I’m tough, I’m a fighter, I can beat this sickness, they pray for me and wish me well on my long recovery. But I don’t feel tough. I feel like a mess, crying for this stranger dying alone in his glass room.
I’m not religious, but if you are and you want to pray for anyone, pray for his release from this mortal coil.
I feel so powerless.
This evening, around nine, I tried to go without oxygen again. It went fine for about two hours, slight fluctuations from 92 to 90 and back again, but after that I couldn’t keep it up and had to go back on the oxygen again. I’ll have another try tomorrow.
(April 27th) Today was one of the bad days. I woke up without my oxygen tube in my nose. When I measured, my saturation was around 85%, so we had the oxygen upped to 2 liters and left it there the rest of the day,
Most of the morning and afternoon I felt tired and not at all hungry, so I had to force myself to get breakfast and lunch to have some energy.
This lasted until well in the evening, so better luck tomorrow.
(April 28th) I got up at seven-thirty, removed my oxygen at 10.00 to check if I could get back to 92% at rest. Had a shower and breakfast. Saturation dipped, but came back to 92-93%. So, that is promising Let’s see if I can keep this up for the whole day.
My saturation seemed stable until bedtime. I was feeling pretty good, walked around, ate lunch and dinner, wrote 8 pages of draft for DRONE – a murder in the hospital scene – and went to bed around midnight.
(April 29th) After midnight, when I lay in my bed, the lung spasms came back and I sat coughing up sputum until a quarter to one. I measured my saturation at 89%, but since I had been coughing vehemently, I still went to sleep without extra oxygen.
I woke up at 04.38 hours to go to the bathroom. Before I got up, I measured my saturation, which was 79%. I relieved myself, got back into bed and took another reading. Despite not lying down, my saturation fluctuated between 77-79%, but I figured that I’d leave that for now and see how I’d feel in the morning.
I slept like the dead until the nurse woke me at 8.00 and asked me what I wanted for breakfast. I had to drink some water before I could answer and told her the same breakfast as yesterday – wholegrain bread, tomato, cheese, egg, ossenworst, coffee and diabetes lemonade, and extra water. I got up and sat in my chair behind the desk. She took my vitals, which were pretty good, except that my saturation sitting up was 85%.
She asked me if I wanted the oxygen, but I told her that the idea was to see if I could maintain 92% at rest and sitting up over a period of 24 hours, so I opted to wait, eat breakfast and check my saturation on my own meter.
My appetite was very low and looking at breakfast was making me nauseated, but I ate the banana to have something in my stomach when I took my meds.
I was monitoring my saturation and doing deep breathing exercises while drinking my coffee, the lemonade and two bottles of water, but not only did the saturation stay under 89%, my kidneys and joints started aching, and I felt a headache coming up, so I took two paracetamol.
When at 09.15 hours the saturation still remained under 90%, I gave up and connected the oxygen tube again, starting with 2 liters for twenty minutes, then lowering to 1 liter. My pain dissipated – either from the oxygen or the paracetamol – but my appetite didn’t return, so I got a cappuccino and more water and put the uneaten breakfast back in the hallway.
At 10.15 hours the nurse came to tell me the doctor would be by later today and that he wanted me to switch off the oxygen if the saturation was good enough. Saturation was at 95% with 1 liter, so we turned off the oxygen.
My oxygen saturation was 90% at 10.40 hours and 88% at 10.55 hours. I took a shower and afterward my saturation was 83% at 11.25 hours, creeping slowly to 89%. Ar 12.20 hours the doctor came, again a lung doctor who didn’t care much about my low saturation and found me fit enough to go home. Or go to a ZorgHotel (CareHotel), which I ‘had to arrange myself’.
I told him I was worried about going home alone and he told me he’d ask the social worker to talk with me about that, because my fear was irrational, as I ‘wasn’t in any danger’. I told him that his assessment was based on a very limited knowledge about my condition and home situation, where the efforts I exhibited in my hospital room would be tenfold at home. And I’d have no help as nobody dared enter my corona infected house.
I won’t be sent home today (they asked me about dinner, so…) but if they do want to send me home, I will need extensively more care than they now offer to provide.
And a private facility like a ZorgHotel is way out of budget for someone living on Welfare, so that’s not an option. I’m getting so sick and tired of having to argue that low saturation might not be considered ‘dangerous’ to them, but if my kidney starts malfunctioning because the lack of oxygen in my blood, I might get kidney stones again. If their assessment is wrong, I might have to be rushed by ambulance to the hospital for the FIFTH time. All because they prematurely discharged me the first few times. Which is also why my friends and neighbours don’t trust their assessment of my contagiousness. And why should they? They sent me home prematurely three times already….
I had a second discussion, now with two lung doctors. I explained to them that in my opinion, low saturation was a problem. Not just because I notice mental trouble in the clarity of my thinking when the saturation goes below 90%, but also because I have a kidney stone problem and my kidney might start making stones due to lack of oxygenated blood.
”Well, I don’t know about that,” the other lung doctor said. Before he could continue, I said, “Exactly. You don’t know. And all I know is that the low saturation gives me pain in my kidneys that I do not feel when my saturation is 92% and over. So let’s not assume anything, but just make sure I have a way to bringing my saturation levels up by providing an oxygen machine in my house.”
They could arrange that. And I told them about my personal feeling of safety in the home alone at night would be assuaged by having a panic button, so I could sound the alarm with a press of the button, instead of having to call 112 and explain what I needed. As I might be in such respiratory distress or coughing that I couldn’t speak. Again, a panic button would probably be unnecessary, but if its presence eases my anxiety about being home alone, it’s not that difficult to arrange. They readily agreed to both the oxygen machine and panic button and checking how much care I could receive in the home, while I arranged for the cleaning service to go into action as soon as I tell them when I’m coming home.
While all this sounds pretty amicable, the stress generated from having to argue with doctors to just get the proper care at home is extremely draining and unnecessary. I’m lucky that I’m an expert in risk management and negotiation, but what if I hadn’t been? I shudder to think about how less capable communicators would fare against such ‘opposition’.
One troubling thought was that the doctors remarked that if after all these precautions, if my home recuperation failed, they would have enough evidence to support the notion that I should’ve gone to a revalidatiekliniek care facility….
Anyway, since I’ve been thrown back to my own devices again, I’ve spoken with Westfalen Medical Supplies, who will bring an oxygen converter to my home tomorrrow morning and I arranged for my neighbour to hang up a note by the door to ring her bell, so she can let them in. The panic button they were supposed to arrange, couldn’t be arranged by the hospital, so they gave me a telephone number, which answered that the service line was not in use at the moment. So I will have to try that again tomorrow.
In the meantime, I’m fortunate to have friends. One friend will come over tomorrow evening and sleep over, so she can watch over me. Another wil come over Friday evening to do the same.
I feel asleep watching Kingdom on my iPad, so I measured my saturation, which had dropped to 88%. So I hooked up the oxygen and set it at 1 liter, so I would have a steady supply of oxygen during the night.
(April 30th) I slept fairly well, no coughing bouts and only one early morning toilet break. At 07.30 hours I woke and switched off my oxygen, then measured my saturation, which was 88% but climbed to 92% within minutes. So I left the oxygen off and sat at my desk doing breathing exercises. Probably will be sent home this afternoon, so I better prepare to have energy for packing my bags. I will ask for the hospital to arrange transport back home though. It’s about ten minutes by car, but I don’t want to accidentally infect a taxi driver if it can be avoided. Although I’ve been tested negatively for Corona twice. So I told them I needed oxygen during transport, and they would arrange for transport by ambulance.
I was told the ambulance would be there by noon, so I packed my bags — a heavy one with my Kolibri typewriter and all my writing materials and the photos and my maps with poetry and the DRONE draft; another slightly less heavy bag with my regular stuff, like my vaporizer, headphones, the camping lamps, extension cords and adapters; a daypack with my toiletries, eyewash, medication, et cetera; and a bag with my sheepskin and bathrobe. Plus my sling bag with my valuables.
They put a wheelchair near my room and I told them it would be quite a strain for them to use a wheelchair to cart me with an oxygen tank and five bags to the exit.
Ten minutes to noon I was ready and waiting. And waiting. And waiting some more. At ten to one, one of the nurses told me she’d bring me to the ambulance taxi. A small Moroccan woman to push a wheelchair with a man weighing 96kg, plus five bags. I asked her if she was sure, but it looked like she had no choice.
With both heavy bags on my lap and the sling bag hanging from my shoulder, and the two lighter bags hanging from the handlebars she pushed me to the exit. I inquired about the oxygen, but she said I didn’t need it for the wheelchair ride to the exit, and the ambulance should have its own supply.
After she got me outside, it turned out that the ‘ambulance’ turned out to be a van without an oxygen supply… No surprises there.
The medics who helped me were friendly and carried my bags into my house, so no complaints there, but they told me nobody mentioned me needing oxygen…
To avoid making these blog posts too long, I posted the rest of my story in a third blogpost documenting my convalescence.
Love you all, thank you for your support.
Feel free to comment on this diary, I love to hear from you. And if you wish to support me in any way, read my novels!
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