In the Dutch part of my website a person can find all about my diseases by condition as well as a important part how coagulation works (for dummies) and how I manage to combine this with my life.
In the English section I combined it all by this text.
The antiphospholipid syndrome
this was my first official diagnose although I have been in a hospital before due to a collapsed lung. I suffered from different health issues buy the worst were the headaches. Also had problems with focusing and concentration and sometimes my vision and speech were blurry. At some point I got sent to a university hospital and after many tests and old and grey Prof came into my room and he told me he might have an idea what was wrong.
As he was right I officially was diagnosed with the antiphospholipid syndrome but they told me they would figure out if lupus was active also. I started searching the Internet for more information but I couldn’t find zip ..(2006)
the only possible treatment(coagulation) was not possible due to the damage in my lungs so all I could get was a simple aspirin to make my blood a bit thinner. Fatigue and headaches ruled my life I was sent to a rehabilitation clinic to adapt this in my life. The struggle with the fatigue was won by getting into motion. Just take a walk instead of laying down, it works amazingly!
By the time I found the website of the huge support foundation with all the information I needed. Because there were no other options my doctors start treating me with hi anticoagulation and amazingly I got my life back and got rid of all the headaches.
I live long and happily should be the next sentence but life has sometimes cruel complications.
At some point I was reading my son a bedtime story. He was six years old just learning how to read and write. He told me I was reading another story because the characters say something else. He was right somewhere between my brain and my mouth words just got mixed up. I told my doctors and after a couple of test they confirmed I was suffering from NPSLE lupus in the brain. I was treated in a very aggressive way with medication like Endoxan (chemotherapy) and prednisone in very high doses. It took me six months but the lupus came in some kind of remission.
Two years later the same happened in my lungs although it was not sure if this wasn’t happening in my brain also. It was also treated with this combination of high doses of prednisone and Endoxan. It was very strange period in my life lots of times I find myself sleeping in the hospital. Or undergoing one of the many test to check my functionality.
But then again the lupus came into remission of a sloppy kind. Lots of health issues but never a proven lupus flare.
Then again this will be a nice place for the long and happily ever after part..
But as I mentioned life is cruel. I got involved in a bicycle accident -that have nothing to do with lupus- with all my anticoagulation medication I did simply fall down at an abandoned place somewhere at the middle of nowhere. I did not lose consciousness however I could feel the blood pouring down my head.
I was able to call an ambulance but they could not stop the bleeding. So I was rushed to the nearest hospital and even there the staff had difficulties with stopping my bleeding. By the time they succeed it was one bloody mess!
I stayed in the hospital for one night to check if there was no other damage and I was sent home. So far so good, but I kept feeling like there was something wrong in my chest. I did not related the trouble to my fall but in some kind of mystery way I kept dreaming of tubes who needed to be aligned. Strange pain in my stomach woke me up each and every morning but every time I visited my doctors I simply forget to mention this discomfort because I thought it was related to my medication and stomach acid and there were always a lot of other things to discuss.
One night I shook up my bed before sleeping and I felt a tearing feeling between my shoulders inside my body. It instantly felt like I was in deadly trouble and I decided to call a doctor. An ambulance was rushed to my place and they brought me to my local hospital. They did not make the right diagnosis and after a one night stay(one of the benefits of being a lupus patient) I was sent home again.
It was not a success story. Next morning I woke up, terribly ill but not with the dream of the tubes who needed to be aligned… Strange but true that I never had it again. I had a severe headache with lots of pain in my yaws. A doctor was called and he decided to send me to the hospital.
And here is a lesson for all of us, the doctors were looking for all kind of complicated things because I was a lupus patient with antiphospholipid syndrome. The terrible headache I had from my jawbones was not ignored so they made a scan from my head. It didn’t tell them anything. The obvious was found a couple of days later in my university hospital when they made a CT scan from the chest and found a lot of trouble in my main artery which was broken
Normal procedure is cutting open the patient and replace the artery but in my particular case it was not possible due to the damage from active lupus. Expectations were I would not survive surgery, doctors weren’t even sure if I will survive the night. But I did!
In a three month period the lupus was battled into remission and I was prepared for major surgery. It was a strange period with a time bomb in my chest which could kill me at any moment. Not just for me but also for my relatives.
During eight hours of surgery surgeons replaced my main artery while my heart was not beating. My body temperature was kept low to prevent brain damage and after a couple of hours at the ICU was healthy enough to wake up.
At first I had some problems with my voice but it healed miraculously. So now I a artificial main artery but also the lupus to bother my health.
All the events grew some personality and it made me stronger. I am no longer able to work full-time in a normal function but I give my energy to my patients organisation to spread the word around about lupus the antiphospholipid syndrome and the main artery breach, but I really hope this is it, no more rare diseases for me…