-
Sunday Morning (18)
Writing my Sunday morning contemplation – only now on a rainy Monday afternoon. A difference which, in our lives at least, doesn’t mean much anyway. The impetus to write however needs an empty mind to start with, at least in my case. And apparently, the Mind of Sunday had been too busy. All week I have been writing up and down e-mails with my cf-team about the upcoming yearly tests that we could do end of the month, to figure out the most effective choreography of that day. Then, my protection against covid should just be working optimally, and hopefully the fourth (delta-induced) wave has not taken off yet. Because walking in a hospital building from one test to another, with a poor lung function and my breathing hindered by a good face mask, is no sinecure, we had to figure out ways to limit my time inside to the absolute minimum – even aside from infection risks.
In order to start on Kaftrio, some extra tests were deemed necessary, like a chloride sweat test. I have done such test once in my life before. I must have been about four years old, and I remember nothing of it. I only know because my mother occasionally told me about it. How, even after losing her second child from a measles-induced pneumonia (the brother with cf I never knew because he died before I was conceived), she didn’t (want to) believe that I, her fourth child, who thrived so well after a troublesome start of 6 months in an incubator, could also be affected with this condition. But that the pediatrician suddenly suggested that it was time to do the test. And how the test turned out, devastating her optimistic beliefs, turning them into her worst nightmare. So now this test needs to be repeated. Not to re-affirm me having cf, because in the meantime science discovered the genetic location of the disease, and my specific versions of it were duly documented. But just to be able to assess later, by doing yet another sweat test in a few months, whether the new medication actually worked or not, by showing a lower chloride concentration – should there be any doubt about that. I suggested that if our dog didn’t want to lick my salty arms anymore at the end of the day, this would be all the proof we needed. But sadly they didn’t follow my reasoning and chose to rely in stead on the abstract results of a dead machine – and this in a time where a dog’s nose has proved far more reliable than a covid self-test. It all sounded a bit overly complicated to me, but sometimes you have to give a little in order to get what you want, even if it feels silly. The sweat test will take about one hour and I found a way to fit it efficiently into the program of the day, next to the blood test, the radiology and some more stuff.
In order to apply for the medication in the compassionate use program of the manufacturer, I also had to dig into my own dusty personal medical files to come up with the original confirmation of my specific genetic cftr mutations, because my current cf center didn’t have this. They only had letters of previous pulmonologists stating these same facts, but strangely enough this was not deemed hard evidence. What did the trick was a letter from the year 1992 in my own dossier, a time when I was working as assistant professor civil law at the university of Leiden, and was visiting another cf-clinic there. Personally at that time, I was not very interested in knowing my specific genome regarding cf, but my youngest sister was planning on having children and she and her husband wanted to assess the risks, given the genetic problem that ran in her family. Fortunately my sister had three perfectly healthy children since, all of them being well on the way of becoming independent these days. So, back in 1992, I provided a tube of my own blood to be tested, and so did they and my parents. The letter with the results was typed by hand (no personal computers and printers around those days). The R553X was typed perfectly clean, but they left a space before the “508” to fill in the little triangle of the “delta” sign later, clearly visible in wobbly handwriting.
It felt a bit surreal, all these things to prove that I indeed had the right type of cf, considering that my whole medical dossier has been proving this all the time beyond reasonable doubt – I thought. Not to mention the reality, of which the dossier was only a poor abstraction. Now this old letter has been scanned into my dossier by my current cf-team, making it part of the new digital abstraction we call reality today, without which we don’t officially exist, system-wise. No wonder most people can’t answer the question “Who Am I” anymore.
Well, enough about this little unvoluntary trip down memory lane. Tomorrow I will get my second covid shot, and Debbie is due on Sunday. Let’s deal with that first. Actually no, let’s make a cup of coffee first – one has to set one’s priorities straight after all, and there is only the immediacy of Now, directly available without distance, tests or thinking.
-
2 Replies
-
As I read this, coffee half gone on the side table next to me, I find myself agreeing with you about priorities. I joked a little with Bailey in a recent response to her post about anxiety, but as I’ve been experiencing an increased level of anxiety and desire to withdraw, I’ve found a lot of comfort in focusing on the here and now, the things I can address in the moment with as little thinking as possible. I always appreciate your reminder to simply be.
As always, I enjoyed reading your update. Thanks for continuing to write them.
-
Thanks Jenny, my pleasure!
-
Log in to reply.