• I haven’t been writing here for a small eternity. The reason for that is firstly that I wonder if it’s actually safe to have this blog, I mean considering hackers? From my visitors’ viewing page I can see a lot of my ”visitors” are from Hong Kong or Russia, and I really have to wonder how did they find my blog? A Finnish website blog. Ok, maybe I’m being paranoid, but these days it seems the internet is not a safe place at all. The second reason was that during my mandatory rest period I was not doing a lot of sports obviously, so it seemed a little pointless to write anything. Then when I could start doing more things, I felt like maybe this was not such a good idea, because it might not be safe, and I’m basically just writing to myself here.

    Well, now there’s been a really big change in my situation concerning the blood clot I had earlier this summer, and I felt like I needed to write about it, so someone in the same situation could read my experience. I really wished I had found more of peoples’ experiences myself, because this is a rare condition, and even doctors (in my case at least) have had trouble explaining everything and giving me information on what is happening and what should I expect.

    Indeed, the reasons behind my blood clot were multiple. I do not have any genetical predisposition or previous cases of blood clots in my family or close relatives, I don’t smoke, I’m not old or overweight, I don’t have high blood pressure, I exercise regularly and eat healthily, I don’t have any chronic illnesses etc. Still, I got it. The main reason was because I have a structural defect, that I had no idea existed. It has never bothered me (until now I understand why my arms are the weakest part of my body and why I have really cold fingers and my hands get numb easily), and it’s not visible or even easily noticed in x-rays etc. The defect is that my right side’s first rib is in a position, which leaves too little space for the blood vessels and nerves to fit properly, squeezing them together. This condition is called Thoracic outlet syndrome. It is quite common, and there are three different main types: vascular, neurogenic and nonspecific, but I won’t go into details now. I have the vascular-type. What made it worse for me was exercising. Exercising is almost never portrayed as bad, but in my case it made the narrow space even more narrow, when the muscles in my shoulders started to grow. Then the repetitive movements I did while exercising and doing things with my arms in a bad position (any postition that made the space more narrow) caused repetitive strain injury. The injury was inflicted on my vein, damaging it slightly, causing intimal hyperplasia (cell size enlargening), inflammation and fibrosis. When my body tried to heal it, it formed venous webs and extensive collateral formation and perivenular fibrosis, meaning it made the vein more narrow from inside as well. Because of the repetitive trauma being the reason behind the blood clot, my condition is called effort thrombosis, or Paget-Schroetter disease (a venous variant of thoracic outlet syndrome). The last reason, which made things worse, was that I was using hormonal contraception. It’s been proven to cause blood clots. I was using the kind with the lowest dose of hormones, and the lowest risk of blood clots, but in my case it was too much anyway.

    I probably had the blood clot for a week before going to the hospital. The symptoms were swelling, pain, pins and needles when I held my arm above my head, weakness in the arm, skin discoloration and bruising near the armpit, veins becoming more visible, breathlessness and a feeling of pressure on my chest (I had also a pulmonary embolism), slight nausea etc. I spent six days at the hospital, where they were able to remove the blood clot from my arm, but not from my lung, and made a lot of tests etc. I had to start using anticoagulant medication, but I was lucky that I didn’t have to keep using the Klexane syringes or warfarin, which I understand is quite a tricky medicine to use, but instead, I could start using a new medicine Xarelto. It is much more expensive, but easy to use and very effective. The downside is that there is no way of stopping the medicine from working, so if I’m in an accident, I might lose a lot of blood. Warfarin has an antimedication, which stops it from working, so you don’t bleed as much. I have also been using a compression sleeve, and I’ll have to keep using it for another year and a half to prevent new blood clots from forming and to enable better blood flow in my arm. Summer was quite uneventful. I was calling the hospital almost every week to ask what was going to happen next and was I going to have the surgery. I had a venogram (x-ray of the veins) taken, which showed that when I have my arm bent above my head, almost no blood could flow into my arm. This was enough to convince the doctors that I needed first rib resection (removal of the first rib through surgery). I had been pushing for it myself the whole time after I had been reading about Paget-Schroetter disease, so I was very happy that it was finally going to happen. The information that I got from reading was that it was common to do during the first hospitalization from a blood clot, or during the same month. In my case the timespan was much longer. I seriously hope it will not matter. My surgery kept being pushed further and further, and no one seemed to know when would it be. I kept calling the hospital and the surgeon, but there was nothing to be done. I felt very helpless and alone during that time. I’ve also been quite disappointed in how things are handled in hospitals now. I didn’t receive almost any information, and most of the information I got was not in written form. I did not get a lot of instructions about what I should ot shouldn’t do, and if I should do some physiotherapeutic moves etc. And during my stay at the hospital they actually did a few mistakes, like mixed me with the other patient in the same room, but thankfully nothing too serious happened. None the less, I appreciate the doctors and nurses who healed me so much. I understand everyone is human and makes mistakes. The thing I don’t understand is why the hell should people doing such important jobs have to do 20 hour shifts? What is the point of making someone tired out of their mind, especially in a job that requires sharp thinking?

    Finally, my surgery was arrainged to be on the 21st of October. I didn’t have more than a week to get myself mentally prepared. I was so releaved and happy it was going to happen, but for the first time I also got scared. The operation is in a part of the body that is full of blood vessels and nerves, close to the lungs etc. A lot could go wrong. But the surgery is otherwise quite straight forward.There are a few ways to remove the first rib, mine was done from my side, under the armpit. Before the surgery I had to go to a few more blood tests, and had to start using Klexane instead of Xarelto, and I had some interviews and talks with the surgeon, the anesthesiologist, the physiotherapist and some nurses. They told me what to do before the surgery and what was going to happen and what to expect.

    My surgery went very well according to the surgeon. I had not been eating the evening before, and received some pain killers even before the surgery. It made me a little apprehensive, considering how much pain was going to come after the surgery then? I had also had a shower at home before coming, and changed into a hospital gown and compression socks that reached all the way to the top of my thighs. I received a sedative, and spent some time sleeping on the portable bed under a heated blanket before the surgery. Everyone was very nice to me and kept me calm before the surgery (although I did cry before falling asleep). I had come to hospital at seven in the morning, and the surgery started sometime after nine. I don’t remember much from the surgeryroom, because I had been asleep until we got there. They put the IV-feeders on me and after that I was anesthetized. I woke up at two. Initially there was not a lot of pain. I had a tube sucking exess fluid from my lung-area. During and after anesthesia the lungs don’t function as well as normally, and some fluid can build up. I had another machine that was pumping my legs to keep the blood circulating efficiently, because blood clots are common after surgeries. I had some more blood test, and an x-ray of my lungs done. As well as that, to prevent the lungs’ inside walls from sticking together and enabling deeper and fuller breathing, I had to do some breathing exercises like blowing into a tube that was in a bottle filled less than half way with water twenty times every two hours. When the medication started to wear off, I could feel the pain the first time and got quite scared by it. I received pain medication about every three or four hours, but I was also able to ask for it myself if I felt bad. I started using Klexane again maybe the next morning, when they also removed the pumping machine and then later the tube to my lungs. I had a ton of blood tests done, and a venogram that showed the blood flow was now great. The first two days after surgery three fingers (middle to little) on my right arm felt numb. On the third day it spread to the whole arm, and got worse. My skin felt very sensitive, and it hurt to touch. This lasted for a few more days. I was released on the fifth, and by then I was sure it was nervepain. The surgeon said I shouldn’t worry and it was common. It should go away soon.

    None the less, two weeks after surgery it’s still present. And it got a whole lot worse after I left hospital. First it felt like I slammed a door on my whole palm and fingers. After that it also felt like I put my whole arm on a hot stove. It burnt like hell! Luckily that went away. Now I feel like there were needles inserted into my forearm, wrist, knuckles, elbow and sometimes armpit. It’s very painful, though it lasts for seconds, coming back multiple times. Like stabbing with a needle. 🙁 I still take strong painkillers, and I’m currently at home for a few weeks more. Though I think I won’t be able to work or do rougher sports for a much longer time. I do physiotherapy movements every day, and some breathing exercises still. I go for a walk every day for an hour, but it hurts my arm and my side. The wound from the lung tube hasn’t fully healed yet. I rinse it with water in the shower every day and dry it with a new clean paper napkin. In the beginning I had trouble sleeping through the whole night, because of the pain, but now I can do that. It has made a big difference and I feel better. I try to stay positive, but the constant pain is bringing me down. Luckily I have a great support system from my boyfriend, my parents, my relatives and my friends. 🙂

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