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It's early morning at the hospital check-in post and I'm greeted by an energetic lady. She has a hospitalbed ready for me, but need to take a few blood tests first. They need to see if there is anything in my blood indicating an increased risk of bleeding. The waiting room looks a lot like of a living room with large, deep sofas, candles on the tables and pictures on the walls. A muted TV is showing the morning news, summarizing yesterday's covid-19 numbers. I wait for a few minutes before a nurse shows up to take the blood tests. A few minutes later, the energetic lady comes back and measures my blood pressure. 117/75 which is good. If it was over 140, it would have been too high to take a biopsy, she explains. Since I need go to the bathroom, she gives me a cup to collect a urine sample. Nephrologists love urine samples, she says with a smile. I have been fasting since midnight so I am relieved to hear that the kidney biopsy is at 10. The small glass of water I was allowed with my medication this morning was not nearly enough. A slight throbbing in the head and stomach makes me look forward to getting something to eat and drink when the biopsy is over. The biopsy itself is at 10:00 and will take about an hour. While I am lying and waiting, I see 2 surgeons pushing a small bed that must be a small child who has just had surgery. It sort of puts my whole little biopsy procedure in perspective. Right now at this very moment, small children are being treated for cancer and are being operated on. And here I am, a grown woman dreading a little pinch in my muffintop. Soon enough it turns out that a kidney biopsy really is nothing to be afraid of. First, they find the best spot to take the sample by taking pictures from several angles. While this is being done, I am asked to take a deep breath and hold it until the doctor signals. I will be doing the same when the sample is taken. Finally, they have located the sample spot, and I'm lying on the side. The spot is washed with a liquid and a cloth and something that feels a bit like a heavy frame is put on top. A syringe with sedation enters the flesh and I feel a small sting. The doctor explains that there will be a clicking noise when they take the sample and demonstrate. Then they start the procedure. There is no pain, just a strange feeling that something is going on there. Then I am asked to take a breath and hold it. "Click" and I still feel nothing. On sample done. They take another sample is taken and the nephrologist comes to check the samples. I overhear that they can take 3 samples, maximum 4, but the nephrologist is happy with the 2 samples. There is a little bleeding after the 2nd sample and they book me in for an additional check-up in 3 hours and some extra blood tests. I am assured several times that this is something that can happen on occasion that there's nothing worry about. I am not allowed to eat until after the 2nd check-up, but I am allowed to drink water. Thank god, because I am terribly thirsty! At 11:00 it's all over and now I'm on 24 hours of bed rest. The reason for this is to keep my pulse and blood pressure low to keep the bloodflow to the kidneys at a minimum. In other words, I don't even get to go to the bathroom, which means that I have to go in a bowl in bed for the next 24 hours.  Freshly painted nails for my kidney biopsy
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There is warmth in the air and the sun is shining as I put the skins on mye skis. There is no sign of the freezing temperature and wind that has been forecasted. Since the kidney biopsy next week will put me out for a while, I want to make the most of this weekend. So this will be this year's first ski touring trip, and I am standing in a parking lot in Hemsedal. There is a certain nervous anticipation associated with this trip. Am I in good enough shape for this now? It´s a small group and patient people, so I'm not afraid to disappoint anyone. Other than myself, but I feel ready for this. The weather forecast reporsts low tempratures and a bit of wind, so I have a heat pack for the gloves and socks to avoid frozen fingers and toes (Raynaud's phenomenon). Based on the weather in the parking lot, I may have dressed to warm with the insulated pants. Usually get really warm on these kind of trips, but I'm not sure if that´s different now. We put on our skis and start heading towards Skarvanfjellet. Slowly but surely we´re making our way upwards. As we get a little higher, the weather is starting to look more like the weather forecast. I'm glad I put on the warmer pants and tighten the hood on my jacket. The wind is frisky, noisy and coming straight at us. We are sliding along silently, within our own little bubble. Being in this kind of weather is Harder on me than anticipated, but I am determined to get all the way up to the top. Enticing myself with small imaginary prizes as we move along "If you get all the way up you'll get good news soon" As we´re getting closer, I start to realize I will actually make it all the way up. Tears of joy are making their way out and as we reach the top, I can´t hold it back any longer. My friend comes running over looking concerned, but quickly realizes that these tears of joy not pain and joins the celebration. Because this, this feels like a really big win!  It is passed 01:00, and I still can´t sleep. The prednisolone has made me a nocturnal animal. Tears are streaming down my cheecks. Theres a little burn as they run through the rash that has begun to spread down the bridge of my nose. The skin feels tight, sore and dry. A dark loneliness has filled the bedroom and is pussing my head deeper and deeper into the pillow. Maybe it would have been better if I just died now? Go out with a bang instead of slowly but surely fading away in sickness and loneliness? The wolf hour is about to tighten it´s grip. Deep, deep down, at the core, I know it will eventually be ok. That the feeling of being broken and damaged will pass. I will feel better soon. But with the lack of sleep and the wolf hour seeping in, I am overwhelmed by this vast feeling of hopelessness. It's like the power of the wolf hour is intensified by the prednisolone. It spreading like a dark tough, goo and seeping into the most vulnerable places, where it can do the most harm. "Your heart is going to get sick and stop," it whispers. "But you do not need a heart, because no one will ever love you. How could anyone love you now? You are sick, ugly, old. You will die soon, all alone in great agony." The ugly voice won´t let go. "You want children? Forget about it. You don´t deserve to be a mother. Your horrible pool of genes should die along with you" Ironically, lupus means wolf in Latin, and tonight it´s trying to eat me alive from within. I hope it will loose some of it´s energy soon..  The calendar has just flipped over to February and it's time for a new check up at the rheumatologist. I'm a month into the induction treatment and it seems like this is going in the right direction. I´m feeling increasingly better and this weekend I even went skiing for 10K in -13 degrees, without the stinging sensation in my chest. This time I´m cruising to Drammen on my own, no one has to drive me. The only thing I'm a little nervous about today is the result of the antiphospholipid test that´s been taken. Last check-up, I was told that I have an autoantibody (SSA) that can potentially cause a heart blockage in the child during pregnancy. But I have discovered that there is only a 2-3% increased likelyhood of this happening. So if I get a negative result on this antiphospholid test, then it would definetly feel like I´m out of the woods for now. While I wait to be called, I read through the questions I have written down in before this apointment. I am particularly curious about disease activity and where I am on the scale. It seems that there are several ways to measure it, but the word SLEDAI (SLE disease activity index) has appeared the most times. A score is set from 0-105, with 1-5 = mild / low, 6-10 = moderate, 11-19 = high and anything over 20 = very high. This time I get through the appointment without shedding a single tear, but unfortunately it turns out that my blood test results don´t quite match how I feel and what I expected / hoped to hear .. Although my general condition is good, they are not completely happy with the test results for my kidneys and the inflammation has not gone back as much as they would have liked. The nephrologist has therefore recommended that a kidney biopsy should be performed to classify the inflammation and assess whether the medication I am currently on is sufficient to treat it quickly enough. I feel like I'm collapsing in my chair. Turns out these woods Are deeper than I think they are. Of course, it also turns out that the antiphospholipid test is positive. This result is not confirmed positive, until a new test has been taken in 12 weeks, ie there is still hope I will get a different result. When I ask about disease activity, I get to see the form used to assess this. When I came in this Christmas, the disease activity was high, while I am now down to moderate activity, and that is for the most part because of the kidney situation. I guess the ride back home won´t be all puppies and rainbows after all .. Source: Mosca, M., Merril, J. T. & Bombardieri, S. (2007) Assessment of Disease Activity in Systemic Lupus Erythematosus.   |
AuthorA blog about beeing newly diagnosed with lupus. Dreaming of becoming a mum once the disease is under control. I am translating the blog to English so the posts will appear on this page as I go. Archives
November 2021
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