Het gaat achteruit…..

Afgelopen donderdag, 1 augustus, mijn eerste formele afspraak in het kader van de trial. Ook al zit ik in de controle groep en mag ik niet meedoen met de nieuwe pillen, toch moet ik de komende 4 weken iedere week naar het ziekenhuis voor gesprek met de hematoloog en een aantal controles bij de verpleegkundige.
Mooi op tijd worden we bij mijn nieuwe hematoloog naar binnen geroepen. Hij heeft zich gespecialiseerd in myelofibrose (MF). Fijn dat, nu het niet meer stabiel is, iemand met veel MF ervaring mijn behandelaar is geworden. Duidelijk geef ik aan dat het de laatste weken behoorlijk achteruit gaat. Ben meer vermoeid en nog minder actief. De week ervoor is er bloedgeprikt, dus dit is een mooi moment om de uitslag te bespreken. Hb. (energie) is gezakt naar 5.5 (moet normaal tussen 8,5 en 11,5 zijn). Oeps, dat zakt dus toch verder. Logisch dat ik weinig energie heb. De plaatjes zijn gestegen naar 98 (moet normaal 150-400 zijn).

Zorgwekkend is het zakken van het Hb. wel. “Dit gaat richting bloedtransfusie afhankelijkheid”. Lekker dan. We naderen het moment dat mijn lichaam dus onvoldoende bloed maakt om te leven en dan moet ik het maar van een ander krijgen. Wel fijn dat dit kan natuurlijk. Onder de 5 ben je officieel “bloedtransfusie afhankelijk”.  Ik vraag hem of hij in de gaten te houdt of er zich leukemiecellen in mijn bloed bevinden. Bij 10% van de MF patienten ontstaat acute leukemie. “Uiteraard wordt dit iedere keer bij bloedafname gecontroleerd”. Jammer genoeg is de uitslag van de beenmergpunctie nog niet binnen. Daarin kunnen ze nog veel eerder zien of er zich grote problemen, zoals leukemie, aandienen. Volgende week zal die uitslag er wel zijn. Fijn dat ik nu wekelijks terug kan. Tenslotte krijg ik van hem de mogelijkheid om in te loggen op mijn persoonlijke pagina met medische gegevens van de afdeling hematologie. “Ik hou van transparantie”. Nou dat komt goed uit. Ik ook. Prachtig om te lezen wat de hematologen iedere keer over mijn bezoeken schrijven en om de labwaarden en de toekomstige afspraken te kunnen inzien.
We bespreken ook mijn gebrek aan eetlust en gewichtsafname. Dat komt voornamelijk door de grootte van mijn milt. Uit de MRI is gebleken dat mijn milt 21 cm lang is, terwijl hij normaal 12 cm is. Logisch dat ik daar last van heb. Volgende keer misschien medicijnen die mijn maag wat meer ontlasten.
Na het gesprek gaan we naar de verpleegkundige voor het vervolg van alle acties van de trial. Hele vragenlijst invullen, bloedprikken, bloeddruk, en temperatuur worden gemeten. Conform het “trial protocol” belt ze me maandag op om te vragen hoe het gaat. Als laatste lopen we via de poli naar de afdeling cardiologie voor weer een ECG. Snel en pijnloos is dat onderzoek in 5 minuten gebeurd.

Vandaag, maandag, dus gebeld door de verpleegkundige. Ik vraag naar mijn Hb. van afgelopen donderdag en die is nu gezakt naar 5.1. Dat gaat veel te snel naar beneden. Ze gaat dit met de arts bespreken zodat hij voor komende donderdag een nieuw behandelplan kan bedenken.

371 gedachten over “Het gaat achteruit…..

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