Death no. 4
If death can fly just for the love of flying,
What might not do life for the love of dying?
Thus one becomes a prisoner of an illness, locked in by two disorders. Care as control, precaution also proves crucial.
You get stuck in a carousel of engagements: for scans to determine whether the thrombosis in the vena porta is stable; for scans to see if the varicose veins in the esophagus and stomach develop disproportionately; to be bled like in the Middle Ages, in Haarlem at first once a week, here in France only once every four weeks; for obtaining a French ordonnance for such a saignée; then after a week, off to the hospital to take a sample of blood in order to ascertain whether the level of red cells has gone down alright; then at the end of each cycle the rendezvous with doctors to hear the results.
What had happened to me became clear for the first time only here in La Roche, after reading an article about EPO blood doping in The Guardian. Before that, I still thought my intolerable fatigue was caused by lack of red blood cells. However, with blood doping athletes create precisely the opposite – too much of it, which then promotes the absorption of oxygen and thus helps them wasting an inordinate amount of energy during for example the Tour de France.
EPO is a hormone released by the kidneys, it affects the bone marrow which then stimulates the production of red corpuscles. My body does this on its own initiative, I have become an addict of self-doping. The Guardian author of the article explains that an increased production of red cells makes the blood ‘thicker’, which increases the risk of thrombosis, thus of a heart attack, brain hemorrhage or pulmonary distress.
Against this, according to some, athletes should be protected by doping control. In my case, doctors must protect me against my self – until the end comes.
When it would be this merry-go-round as such, my grousing could be controlled. However, imagine my surprise when I visited my French doctor here in Le Blanc whom, quite some time ago, I handed over the Dutch hospital records. Not only did she not read these before, she also gave me a big mouth and finally refused the necessary referral to the hospital. From my JAK 2 condition she had never heard. Thus, no bleedings… As she had already been three weeks on holiday and I had to wait, my schedule became tight.
She demanded from this Dutch patient that the hospital records should be stated in French. I ‘had to go back to the Dutch specialist’. Whether she knew any Latin? – of which there is quite a lot in these documents – ‘whether she understood that my disease history entailed risks’. After all, I could explain to her the instructions from my Dutch specialist in my well prepared French. No go.
Eventually I found a new doctor in Montmorillon who reacted in a normal way and gave me the ordonnances. He was even a Camus-reader as well as a Doctor Without Borders, so one felt at home. This doctor also did not know what JAK 2 means, understandably so as only two people in ten thousand suffer from it. However, unlike the stupid woman in Le Blanc – meanwhile, recorded in my journal as The Butch-Bitch – this doctor, in the presence of his patient, did his research on the screen immediately.
Meeting this man made the medical carousel somewhat bearable. Now pray that in Haarlem, as a result of new examinations, the frequency of these bleedings is not further increased.
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Sierksma, 15.8/2015 Montmorillon – 1.10/2015 La Roche