My Corona Diary – Convalescence.Posted: May 7, 2020
My Corona Diary was getting a bit long, and was nowhere near over, so I decided to break it off after my return from the hospital and document my convalescence.
You can find the first part of My Corona Diary here.
You can find the second 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 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…
But, hey, I’m home again and reunited with Mingus.
My friend M arrived around 17.45 hours and the cleaner S some ten minutes later. We spent about an hour talking through my situation and what I needed, then S went to clean up the kitchen, toilet and bathroom and vacuum the house. He’s fairly young and has been working as a ‘thuishulp’ for six or seven weeks, but he’s capable and friendly, so I’ll probably ask the service for him to be my regular cleaner.
When it became time to go to bed, I still hadn’t be able to figure out how to connect the oxygen cylinder to the air converter, so I took two cylinders, put them next to my bed and connected the oxygen tube straight to the flow meter.
(May 1st) Sleep didn’t come easy — I had lots of lung spasms when I lay down on my flat futon bed, without the ability to raise the headrest. After I fell into a fitful sleep, plagued with nightmares, I woke up with severe cramps in my back and a blocked nose. My saturation was 77%, despite the oxygen.
I woke up my friend M, who could look in my bathroom cabinet for my nasal spray to unblock my nose and to rub my aching back. It took me another hour to get back to sleep.
I woke up the next morning at 08.45 hours without oxygen because the cylinder ran out, so my saturation was at 83%. I woozily switched the flow meter to a fresh cylinder, friend M by my side while I waited for my saturation to stabilize above 92%. Even with 1.5 liter, it took almost ten minutes to get back to ‘normal’ saturation levels. From my knowledge of oxygen, I knew it was better not to kickstart my saturation with 2 or 2.5 liters, because that would cause my saturation to drop sharply if I disconnected to take a shower.
With M’s help I weighed myself at 97.2 kg and measured my glucose at 11.6mmol/l. I took a shower without oxygen and M waiting outside the bathroom. After my shower my saturation had dropped to 83% again, but it rose quite quickly once the oxygen was reconnected at 1 liter.
With M’s help I made myself breakfast, then called Westfalen Medical about my inability to connect cylinders to the converter. Which turned out to be hilarious, because I didn’t have to connect anything to the converter. The six cylinders were for emergency air in case the converter broke down and they would need time to come over and repair/replace the converter. Or if I had to go outside for groceries or hospital visits with my own oxygen. Also, the operator told me I could call 24/7, because the operators were available from 08.00 – 20.00 hours and from 20.00 – 08.00 hours the calls were rerouted to an emergency service.
With the converter running I could have a continuous supply all over my house with the long oxygen tube. So I put the flowmeter at 1 liter and spent the rest of the day hooked up to the machine so my abused body could recuperate and build on its reserves. My kidneys still hurt from the lack of oxygen.
I called the OLVG to complain about the ‘no oxygen’ transport and demanded to speak to whomever had gone against my reasonable wishes. Turned out that Sylvana, the nurse from yesterday, had both nixed my oxygen transport — because I could clearly handle walking around my hospital room without oxygen! – and she has also cancelled my request for Thuiszorg (home care) because ‘I was capable enough’.
I spoke to the lung doctor, Ronald, and told him I was going to file a complaint with the hospital about the (lack of) treatment and the abuse of power, both for Sylvana who deliberately screwed up my transfer and Hilde who on April 22nd had tried to ‘punish me for smoking weed’ by radically lowering my oxygen from 4 liters to 1 liter.
He thought I sounded ‘angry’. Damn right. I was furious. And I hadn’t been able to express my anger while in the hospital, for fear that my ‘insolence’ would earn me even worse treatment than I had received. This type of abuse of power should infuriate anyone, especially those who run victim to such small medical despots.
After I hung up, I called the hospital again, this time to speak with the eye clinic. During my stay I had requested a visit to the eye doctor several times, but it had been denied by the staff of the lung ward. This time I spoke with the secretary and she had me called back by the eye doctor. The eye doctor who called me back during her hectic schedule explained to me patiently how the unit could only see eight patients per day, and those patients were selected on the gravity of their complaints. She suggested that I used the carbogel more frequently as it could take a day or two for my eye to go back to normal after the dehydration it had suffered and to call back if the situation worsened. If I didn’t call, she would call me back on Wednesday to check up on my situation, but if I felt any indication that my vision was seriously at risk, I should call and they would take immediate action.
Such a relief to talk to a doctor who takes you seriously.
I spoke to my huisarts (GP) next. She was appalled at my story of being mistreated and being denied services, hoped I would recuperate at home now that I got my converter going.
On my request, she prescribed sachets of 200mg Acetylcysteine that would help me to cough up the slimy sputum remnants left by the virus in my lungs. Since I was in a ‘weakened condition’ and the side effects of the Acetylcysteine could be severe on a weakened system, she suggested I’d take the solution only once a day (instead of three times daily), preferably after breakfast, when I was settled.
Plus she would have her assistant call me Monday morning to arrange a Thuiszorg nurse to help me every morning to start my day.
I called the pharmacy to make sure they had the Acetylcysteine and friend M went to pick it up before closing time.
Time to get some rest.
The afternoon went better than the morning, especially from having consistent air supplied to me as I walk around the house, but I still feel like a broken puppet on a lifeline leash.
My friend J arrived around nine with pizza and potato wedges. It was so good to talk to her again in person. Calm and focused, I felt so much more at ease. Around 23.30 hours we went upstairs and she gave me a long backrub massage that got all the kinks out of my overstressed back muscles, which had been cramping up from the lung spasms. It was so good to be touched with care and love after seven weeks of hell.
A hug a day keeps the doctor away — going without any loving touch for seven weeks has hurt me more than I realised, even though I’m a shiatsu practitioner myself.
(May 2nd) I slept like a baby, instead of like the dead. Woke at ten to six to go to the toilet, got back into bed and slept to 09.30 hours. This supports my own theory — I suggested getting oxygen at home at April 16th (the day I was taken to the hospital for the third time and was sent home without oxygen).
Those thirteen days at the hospital they did nothing for me except give me oxygen (and fuck about with that, giving me stress and anxiety). I received on additional medication or procedures. Not even an extra lung x-ray or CT scan. They took my vitals — blood pressure, saturation, heartbeat — every few hours, but that also is something I could easily do myself. My saturation meter gives accurate readings of saturation and heartbeat, I have an automatic sphygmomanometer to monitor my blood pressure, I have a glucose meter to monitor my diabetes…
Of course, not every patient is skilled or medically adept enough to keep track of their vitals like I can, but just giving me the oxygen and having me filling out the Corona Check App once a day would have been cheaper and much better for my healing process than thirteen days of hospital stay.
Good friend FR expressed in a chat, responding to my angry phone call to the hospital yesterday:
“I definitely know/understand the necessity of restraining one’s emotional displeasure when in a vulnerable situation (when the ‘authorities’ can make decisions counter to your well-being and preferences). It is survival, quite literally. Once free, it takes a while to get back to doing what you know and want, and insisting on proper responses.”
I could feel myself tear up at her message. She is so right and this is not how it’s supposed to be.
Friend J helped me through the morning and went away around 10.00 hours. I spent a few hours by myself, quite happy, and Friend ID came around 14.30 hours with groceries and gifts. She made curry for me and we watched Monty Python and the Holy Grail.
Before bed, she gave me a relaxing massage, then went to sleep in my daughter’s room.
(May 3rd) I woke at ten to six to go to the toilet. My saturation was around 87%, but sitting up in bed and doing some deep breathing boosted it to 94% and I went to the toilet downstairs, then slept again until 08.30 hours, when ID came to check up and me and curled up next to me, caressing the pain from my back. We had a leisurely morning and I took my second Acetylcysteine sachet, together with vaping cannabis through my PlentyRippa.
I hawked up some sputum from my lungs, but not much. Maybe the 200mg is not powerful enough (it’s basically the dosage for children), but maybe I’ll try to take another sachet this afternoon when I have to vape again.
My friend ID got me some final groceries and left at 15.00 hours. I haven’t used the oxygen tube since then, walked around, made tea and sandwiches, and sat behind my laptop working. The improvement I’m making is measurable though. Two hours without oxygen supply and my random saturation testing reveals 96-97% saturation at rest. Which is three point above yesterday and four points above the day before yesterday.
I’ve also been making plans to exercise outdoors by carrying a canister of oxygen in the front crate of my transport bicycle, so I can have extra oxygen while cycling outside.
I just went upstairs, took the laundry from the washing machine, put it in the dryer, cleaned the dryer’s lint filter, started up the dryer, went downstairs to the kitchen, made myself two sandwiches and sat down in my easy chair again. Saturation 94-95%. Yay! My recuperation time is seriously decreasing. Of course, it’s late afternoon and my energy drops in the evenings, but still, I’m happy.
I went to sleep around 23.00 hours and woke briefly at night from a whistling sound that was the air tube, which had slipped out of my nose. I put it back in and resumed sleeping.
(May 4th) I woke around 08.30 hours, feeling pretty good. The air tube was wrapped loosely around my neck, so I must’ve rolled around a bit during sleep, but not alarmingly so.
I used the oxygen to go downstairs and use the toilet, but upstairs I hung it on a peg and weighed myself (97.2kg, same as yesterday), and checked my glucose (10.2mmol/l, 0.5 points lower than yesterday). I took a shower and after that checked my saturation, which was at 87%, but shot up to 93% as soon as I paid attention to my breathing. So, I switched off my converter, but took the long oxygen tube downstairs to hang it in the entrance of the living room. I have to train my lungs again to saturate my blood by themselves without any help.
Around half past three, after I had some lunch, I decided to get some exercise and loaded a bottle of oxygen in the crate of my bicycle, to ride around town for the first time eight weeks.
I was pleased to notice that I rode about 12 kilometers without needing the oxygen bottle and with my saturation staying over 91%. I got back home around 17.30 hours and made a microwave dinner. Didn’t touch the extra oxygen at all. Yay!
(May 5th) Liberation Day. I slept with oxygen, but switched off the converter after getting up. Weighed myself at 96.7kg, glucose a bit high at 11.7mmol/l, but I feel pretty good. My kids are coming over this afternoon and my daughter wants to go to her (open air) kung fu class, so after breakfast I took her bicycle to the repair service to get the front tyre fixed. I also got the pedals of my own bicycle replaced, then rode to the supermarket to get croissants and other groceries. No extra oxygen needed.
My kids came at noon and were ecstatic at being home. The cat was almost hugged to death and we had lunch with croissants. I went with Nica to the repairshop to get her bicycle and at 15.30 we rode our bicycles to the Herenmarkt, where Nica had Kung Fu in the playground and Tycho played with the other kids, while I did some tai-chi and sat on a bench watching them play. We went home around half past five and my ex collected them at six. Such a lovely afternoon. I had taken my oxygen bottle, but didn’t need it.
The only problem I had during the day was blurry spots in my vision again, which I treated with eye wash and carbogel, but it didn’t help much. Maybe I just strain my eye too much.
My evening was peaceful, I watched part of Apocalypse Now Redux, and I only took oxygen again when I went to bed.
(May 6th) Slept quite well, woke at 07.30 hours, switched off the oxygen and went back to bed to snooze while listening to music. Woke at 10.00 hours and measured a saturation of 86%. So it’s quite obvious I cannot go without oxygen if I cannot consciously breathe deeply.
I didn’t have a relaxed morning, as I had to talk a suicidal friend down from the ledge — she’s been in therapy for almost two years now, but it’s still going nowhere. Terrible. I’ve called the caregivers with the message to call me back and discuss her therapy, because the therapist she’s seeing now is not helping her, but making her situation worse.
I also got a copy of the discharge letter from the hospital. Again, the lung doctor, who should know better, referred to me ‘smoking weed’. Stupid asshole. I called the hospital lung ward and told them that I do not ‘smoke weed’ but ‘vape medical cannabis under prescription of my eye doctor’, so they need to change the file so I won’t be regarded as a ‘pothead’. This may sound trivial, but judging by the attitude of some nurses in the lung ward, the distinction is important. I’m a glaucoma patient using alternative medication, not someone who is deliberately risking his health by smoking pot.
A friend sent me an article in the NY Times from Richard Levitan, a doctor at Bellevue:
“We are just beginning to recognize that Covid pneumonia initially causes a form of oxygen deprivation we call “silent hypoxia” — “silent” because of its insidious, hard-to-detect nature.
Pneumonia is an infection of the lungs in which the air sacs fill with fluid or pus. Normally, patients develop chest discomfort, pain with breathing and other breathing problems. But when Covid pneumonia first strikes, patients don’t feel short of breath, even as their oxygen levels fall. And by the time they do, they have alarmingly low oxygen levels and moderate-to-severe pneumonia (as seen on chest X-rays). Normal oxygen saturation for most persons at sea level is 94 to 100 percent; Covid pneumonia patients I saw had oxygen saturations as low as 50 percent.”
“We are only just beginning to understand why this is so. The coronavirus attacks lung cells that make surfactant. This substance helps the air sacs in the lungs stay open between breaths and is critical to normal lung function. As the inflammation from Covid pneumonia starts, it causes the air sacs to collapse, and oxygen levels fall. Yet the lungs initially remain “compliant,” not yet stiff or heavy with fluid. This means patients can still expel carbon dioxide — and without a buildup of carbon dioxide, patients do not feel short of breath.”
This is exactly what happened to me. And why I’m so furious about not getting oxygen at home when I asked for it. I urge anyone not feeling well to get an oximeter and track your saturation.
I spoke to the eye doctor and she’s going to see if she has a spot for me this week to come over to the hospital and have my eye checked out.
Meanwhile, I had to ride my bicycle to the other side of town to get a free food package from Guerilla Kitchen at 14.15 hours. As a friend of mine lives nearby, I shot him a message I was going to be in his neck of the woods, so we arranged to meet up at GK. Just before I left home, the hospital called and said they could fit me in for an eye examination at 16.00 hours.
T was waiting at GK and we went from there to Monks, where we got cappuccino that we took to a nearby park. It was good to sit on a bench in the sunshine with a cappuccino and a good friend.
I left at 15.20 hours, took the food parcel home and went to the hospital to have my eyes examined. As expected, the dehydration was severe while I had been cleaning and moisturizing my eye continuously. Part of the dehydration could just be the COVID-19 infection, as these viruses have a tendency to dehydrate. The doctor gave me an ointment that was thicker than the gel I was using during the day and told me to apply it before going to bed, as the ointment would be so thick that I wouldn’t be able to see through it, but like a dressing it would keep my eye moistened throughout the night and hopefully help to hydrate it enough to take away my blurry vision. She also saw a tiny spot that could be a pigment flaw, but she wanted to discuss that with my regular eye doctor, who was currently doing administrative duties only as chief of the eye clinic.
From the hospital, I rode around the park some more, then went home to have some dinner and watch the rest of Apocalypse Now Redux.
(May 7th) Before I went to sleep, I put the ointment on my eyes. Felt good.
I slept till nine in the morning and went through my morning ritual of weighing myself and measuring my vitals. 96.8kg, 11.6mmol/l, 94% saturation, and blood pressure 118/84 < very good for someone with ‘high blood pressure’. Made myself breakfast and took Metformin. Now I’m heading out to the park with my bokken, to do some kata training in the open air.
I had a great time swinging my wooden sword around in the pavilion of the Oosterpark, working through my battojutsu kata.
Afterward, I went to visit my friends at Speeltuin De Waag, the playground where I volunteer. So good to see them face-to-face again.
I also went by my local comic book store, Lambiek, where I got some books set aside for me weeks ago.
Then I went home to get some lunch and take my Metformin. I notice that my saturation, which hovered around 91-92% a week ago, is now hovering around 95-96%, so there’s definitive improvement in my health and stamina.
(May 8th) This morning, I had a Thuishulp (cleaning lady) helping me out. I had some things that were too heavy to do by myself, like airing out my futon and changing the bedsheets, washing the windows of the living room, and vacuuming and mopping the floors. So I can look through clean windows again and my bed is clean and fresh again.
After she left, I packed my bag and cane, and went on a long bicycle ride, taking the ferry to Amsterdam North.
I had a cup of coffee at Cafe Zamen and rode around Vliegenbos (Forest of the Flies) which was mercifully devoid of flies.
I love being out of quarantaine — you never miss your freedom so much as when you’re forced to stay inside. Riding around the forest, smelling the earth and the leaves, the fresh air… everything was much more acute and alive. I listened to Philip Glass and Erik Satie on my phone and felt a profound sense of peace.
I took the ferry back to the city centre and rode around the familiar streets, meeting friends and having face-to-face chats. I went home around five, so grateful I hadn’t needed any extra oxygen.
My next door neighbor welcomed me back, telling me she was afraid I might die, every time the ambulance took me away, but she was overjoyed that I was back and getting better. I always got along pretty well with my neighbors, but this pandemic makes this neighborhood even more cohesive than before.
In the evening, I wanted to write some poetry, but my eye started getting blurry again, so I went to bed, put on some music, put ointment on my eyes and lay there in the dark, listening to Seventeen Seconds by The Cure and speaking poetry into my voice recorder.
(May 9th) Another beautiful day. Got up around eight, took a leisurely shower, weight still around 97kg, glucose an all-time low of 8.1mmol/l. Around eleven my buddy MP came over and I made the cappuccino he likes so much. We talked for a while, then went together to Nieuwmarkt, where I went to Jacob Hooy to get Zinc tablets. MP went to the Chinese supermarket and I stood outside, watching over the bicycles and flirting with some women in those summer dresses that don’t leave much to the imagination. One of them was really interested in whether I still had an eye under my patch and she looked a little flustered as she told me that I looked like a pirate biker. Then her boyfriend came out of the Chinese supermarket and dragged her away.
I went for some groceries myself at the regular supermarket, made some lunch, then took my swords to train at the park. As I was stalking around the pavillion swinging my wooden sword, a tourist came up on the pavillion and took a boatload of pictures. I ignored him and just kept training. After he wandered off I wondered if I should’ve given him my card and asked him to mail me the pictures, but I was too late.
I went home to write out the poetry I recorded last night, then made myself some baked potatoes with lettuce and cold roasted chicken flakes.
After dinner, I rode around some more, enjoying the warmth of the evening as I rode around the park. Then I went back home, watched a movie and a documentary on Charles Bukowski. And went to bed around one.
(May 10th) Woke up early, half past five, and knew I wouldn’t sleep anymore. Sometimes you just know. I snoozed for a while, but got up around six, took a shower. Glucose was at 8.8, not bad.
I made myself breakfast, reading while I ate. Around eight I packed my swords and cane and went to the park, where I met a friend who took some pictures and filmed me doing battojutsu and cane–fighting.
I went home around lunchtime and soon after the weather turned colder, so I spent some time working on typewriters.
Just before dinnertime my daughter Nica arrived and we baked potatoes and curry chicken, and had some peas with that. Nica was happy to be home and we had a relaxed evening. Since she didn’t have to get up early — she had Monday and Tuesday afternoon school and Thursday and Friday morning school — so I allowed her to stay up until ten, gave her a massage and she went to bed.
I read some more and went to bed around midnight.
(May 11th) With my daughter’s return, life seems to get back to normal – we took it easy in the morning, my weight was stable at 97kg, and she was interested in how my glucose meter worked, wanted me to check her glucose as well. So we measured hers as well – mine was 10.7, hers 4.9 – and she went to eat her breakfast while I took a shower and washed the ointment from my eyes.
It was a windy cold day today, so I rummaged around the house until she went to school, then rode around on my bicycle and picked her up from school at three to do some grocery shopping. The playground was closed, so we went home and she played Sims while I wrote on my draft. We made dinner together, her favourite pasta sauce with tortellini, and she showed me what she made on her computer before it was time for her to go to bed.
Life starts feeling ‘normal’ again.
(May 13th) Although I’m still not 100%, I feel much better. This morning I woke up at half past six with clogged sinuses from the oxygen. I disconnected the tube and cleared my nose and went to bed again, where I slept until I woke at 10.30 hours. My saturation was good, 97%. And my glucose was 9.8mmol/l.
With all these good signs of my recuperation, I think I don’t need to add more to this convalescence diary. I will have to go for a CT scan of my lungs near the end of May to check how much my lungs have improved, and I will report on that and all relative information on my convalescence.
Thanks for reading this and I hope my diary has been informative. If there’s one important thing I found in battling this virus, it’s the importance of checking your saturation — ‘silent hypoxia’ is a real killer and virtually undetectable without proper equipment — so if you are at all worried, buy yourself a pulse-oximeter to check your oxygen saturation and go to the doctor if you notice unusual fluctuations.
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!