So I intended to write posts about vasculitis and microscopic polyangiitis for this vasculitis awareness month, but as fate would have it, my microscopic polyangiitis decided to flare up this month and I lost an additional 10% kidney functionality and extreme nerve pain so I have been on extra heavy medication and not very active here.
I guess that counts as an information post of microscopic polyangiitis
Blood goo transfusion today. Started with a good old fashioned panic attack and then a tasteful absolute breakdown when the machine made the exact same sound as the one in Copenhagen last year. Not to be "blinking is a sign of trauma" but is this what PTSD is like?
As usual my own personal nurse was kind and patient though, I always feel guilty for having her put up with my shit.
Then heart ultrasound investigation, which I am from now on going to call "idun standing impatiently on your chest in the morning" check. Oww my ribs.
I’ve been wanting to write down as much as I can remember from the month at the hospital in April, and this tumblr blog is the only thing I have that even remotely resembles a journal. So here it is, feel free to read and comment if you’d like, but please don’t reblog.
I was living in Copenhagen when this happened.
A few weeks prior, I started a new medication, an antipsychotic so the usual side effect was to be expected: tiredness. But I’ve been in this carousel before, I know the worst is over after a week or so. I did indeed become extremely tired, and this was during working-from-home corona days so most shifts I ended up napping in the couch at any chance I got. Easily slept 12+ hours per night. It kept getting worse, I couldn’t stay awake during the days, became extremely lethargic. And it didn’t get better after a week, it just kept getting worse. So I called my psychiatrist and told her the medication wasn’t working and I felt so very bad and tired.
I got a new appointment with her, which I can’t even remember really. She got worried and sent me off to the psychiatric ward, where they did the standard blood test. Then sent me off to a room. Luckily I had anticipated for something like this to happen, so I had brought the work phone as well as chargers, so I could call in sick to work. A while later, three people suddenly entered and told me I had to go to the hospital right now, two of them were from the hospital transport. They took me to Amager hospital, I was so confused and not really present at all. I don’t know what they told me, but I needed a blood transfusion immediately. I stayed there for a night, the only thing I can remember is going to the bathroom once.
The Amager hospital apparently wasn’t capable of providing the care I needed, I was transported yet again, to Rigshospitalet. The memories from here on are very blurry and sporadic. Eventually I heard that both of my kidneys were failing, when I was admitted on April 22nd, my kidney functionality was around 18%. If it drops under 20% it becomes lethal. Kidneys are also responsible for the production of blood, which wasn’t happening anymore and I had a very dangerously low count of red blood cells.
I’m super difficult to get blood from if the first attempt isn’t successful, as the poor nurses became painfully aware of after failing on the first try. During one of the first days there, when the daily blood test was to be taken, they didn’t succeed. Three nurses tried, eventually they called for a narcosis doctor to try with a ultrasound machine to find my veins, but it didn’t work very well either. They stung me all around the body, down to my feet and it took at least an hour to get the sample and my body had pretty much gone into shock since medical procedures and needles of any kind are one of my worst fears. Because of this it was decided to install a port for draining blood so this wouldn’t have to be repeated every day.
A kidney biopsy was ordered as well as more detailed blood tests to figure out why this kidney failure was happening. I would also have to call my parents in Sweden and tell them what was happening, and the fact that they couldn’t come and visit me, at all. I was in a quarantined zone of the hospital where no visitors were allowed, not even family. But also Denmark had closed its borders at the time, so they couldn’t even enter the country in the first place.
My only contact with the outside world was my phone that I treated as the most precious thing in the entire world, it was also pretty much the only thing I had with me. I would have long calls with my family talking about the most mundane and boring things but it was such a blessing to hear about, I would drag out the subjects as much as I could and so would they. I’d often cry after having to stop the calls.
The biopsy and tests revealed that I had antibodies that shouldn’t be there. My immune system was attacking the body, pretty much. This autoimmune disease is very rare, Microscopic Polyangiitis, and will cause kidney failure (and other organ failures) if not discovered and treated in time. Since I barely had any prior symtoms, it wasn’t discovered in time. My lungs were also examined as the disease usually targets kidneys and/or lungs, but no significant damage was found there luckily.
I was put on steroids (prednisone 60 mg) that would support the kidneys and dampen the damage from the antibodies as well as chemotherapy (Sendoxan 100 mg) that would shut down the immune system almost completely. Synthetic hormone injections every week to stimulate the production of red blood cells.
Every morning a blood test was done a 6:00, as well as checking the temperature and blood pressure. I was forced to drink 3 liters of fluid every day (which I logged on a paper meticulously - every ml counted) and I could only pick between water, disgusting orange juice or disgusting apple juice. Except during lunch, when I got a small package of milk - this became pretty much the highlight of my day. One glass of milk. That was like pure joy, it tasted so divine. In just a few days your entire world shifts in such a way that this package of milk is what you look forward to the next day.
All day I was bedbound and in a haze, time was entirely dependent on medicine, meal and test times like a work schedule, from the 6:00 tests to the final 23:00 medications, that left 7 hours of rest that was robbed from me because prednisone makes you unable to sleep well, even with the sleep aids I got. Despite being in bed almost all day every day, I was constantly sleepy and tired but I would never get any rest. Couldn’t even pee normally either, had to collect everything in a bottle for them to log.
But of course it would get worse. After about 6 days, my doctor came in and told me that the treatment didn’t seem to be working fast enough. My kidney functionality kept dropping, now at 13%, creatinine levels above 400 (it should never be above 80 for women, around 200 is kidney failure). They had one more weapon to combat this - plasmapheresis. This would mean connecting me to a machine that would take out my blood, clean it from the harmful antibodies, and put it back in again. Hopefully this would buy me time for the treatment to win. To do this, they had to cut up my throat to insert two tubes that would take in and out the blood. I had to be awake during the whole procedure to control the breathing as instructed.
I wasn’t connected to the machine all the time. A few hours every other day. It was noisy, sounded like a miniature washing machine, and I hated it so much. The tubes in my throat, blood going in and out of me, it was just pure terror even if the procedure itself didn’t hurt. I got some mild sedatives but they were way too mild and didn’t do shit. The fact that I didn’t have to be connected to the machine every other day became yet another highlight like the milk. I’d talk about how today was such a good day because it was a no machine day, like a holiday.
Showering was horrible too. Because of the tubes I had to avoid getting them wet as much as possible while still somehow washing the hair. Then the tape around the tubes had to be changed and I hated anyone touching that area. I went for as long as I could between the showers, up to 9 days.
I was quickly becoming very weak, as the medications and chemo ate away at my bones and muscles. My legs have always been strong, I’ve had no problems doing squats with a grown man hanging on my back. But one day when I was in the bathroom, I spilled some toothpaste on the floor. I squat down to wipe it, but I couldn’t get back up again. My legs were way too weak. I ended up having to drag myself up via the toilet and sink, it felt so humiliating I refused to use the button to call for help. I bet it took several minutes to get back up standing.
It was still very unsure if I would make it, the plasmapheresis wasn’t a guaranteed help. One day a psychologist came to talk to me, but the only thing I remember is that he asked if I was afraid of death. I told him that my current biggest fear was the damn tubes in my neck, the constant needles, every day the touching and prodding of my body, but it didn’t seem like it got through to him. Maybe because my Danish was so damn shitty too, I could barely articulate myself and what I felt in Swedish, much less in English or Danish, I think I was mostly rambling incoherently.
In the meantime my parents had been writing the hospital for updates and visitation possibilities, and eventually the kind nurses and doctors there started fighting for getting my parents to visit. They got granted an exception by the hospital to visit my room once per day, but they still couldn’t get into the country. My parents contacted the Danish police asking if an exception could be made since it now was entirely possible that this could be the last time they’d see me. They were eventually granted permission and now the final hindrance remained - getting there. Since they live far up north, the transportation options are limited especially during corona. There were essentially no flights, so the second best option was train for about 2 days.
As luck would have it, the plasmapheresis did help, my kidneys were slowly recovering and once I got up to around 25% functionality, I was free from the damn machine and the medications now had the upper hand against my stupid immune system. In the final days at the hospital, my parents arrived. And we could actually be happy because it seemed like the danger was over. I begged the doctor to release me and let my parents help me at home instead. I knew how to take the medications by now and it wouldn’t be necessary for daily tests anymore. She agreed but I had to come to the hospital every few days for a checkup.
And that concluded my first chapter of this disease and kidney failure. Thank you for reading all the way to here, I appreciate it.
Jag haaaatar att gå upp tidigt... Alltid. Jämt. Oavsett. Men men, när crawlträningen börjar 08.00 i Linköping så får man tvinga sig rätt hårt. Klaaaart värt besväret. Fasen vad kul. Koordination, rörlighet och andning = svårt när man är stel som en värmepump. Nästa pass är redan imorgon. I hate early mornings. I am sooo not a morning person. However, the crawl session started 8am so I needed to get up. But really worth it. A good session with a lot of technique training. I find the coordination a bit hard and as I am loose as oil cistern, it is a bit harder. Well I look forward to my next session... tomorrow. #njurpaj #simträning #swimming #crawler #swimtraining #rehab #garmin #fenix5x #jagsimmar #rwpasset #kidneytransplant #merorgandonation #njursvikt #getfitorcrytrying #comeback (på/i Linköpings simhall)
