Extra controle


Vorige week kwamen we met een rot gevoel en geschrokken thuis. Bijna een half jaar onderweg na de stamceltransplantatie, geen enkel verschijnsel van afstoting en dan ineens Graft versus Host aan mijn huid. En gelijk graad 3 (max is 4). Op de terugweg van het ziekenhuis langs de apotheek voor de prednison zodat ik er gelijk mee kan beginnen. We zijn zo bang dat het overslaat naar darmen/lever of longen. Hele week aan het anti-afstoringsmedicijn Neoral (2x300ml per dag) en 70mg prednison per dag. Dat is niet alleen nuttig om de afstoting te voorkomen, het geeft me ook meer energie. Ik loop meer en verder door het huis, over de parkeerplaats en gelukkig merk ik dat mijn spieren weer een beetje terug komen. Voordeel bij een nadeel, zeg maar.

Gisteren extra controle bij de hematoloog. Natuurlijk spannend. Het lijkt erop dat de uitslag aanzienlijk minder is geworden. Maar wat zal mijn Hb.doen? Die Neoral werkt ook een beetje als een rem op de productie van bloedcellen. Een verlaging van de 6.2 naar ergens in de 5 ligt voor de hand.
In het ziekenhuis word ik nog door Marjolein (en dit keer ook door mijn dochter Karin) rondgereden in de rolstoel. Die grote afstanden naar lab. en hematologie kan ik zeker nog niet lopen. Wel laten we voor het eerst (!) de rolstoel in de wachtkamer staan en wandel ik trots de spreekkamer in. Wat moet dat ook voor de hematoloog, die zo gevochten heeft om mijn leven te redden, een fantastisch gezicht zijn.

Hij bekijkt de uitslag (voornamelijk nog op mijn rug) en doet redelijk laconiek. Prima, ziet er goed uit en het lijkt onder controle. Dit komt vaker voor bij het afbouwen van de medicatie. Pffff. Dat is goed nieuws. En de waarde van het Hb (rode cellen) dan? 6.5. Wow zo hoog is hij in 3 jaar misschien 1 maal geweest. 
Trombocyten (bloedplaatjes)   174. Moet tussen 150-450 zijn. (op de IC heb ik 5 gehad)
Leucocyten (wit = weerstand)  4,5.  Moet tussen 4 en 10 zijn.

En nog meer goed nieuws. Nierfunctie is prima, leverfunctie is iets verbeterd.
Het beenmerg maakt altijd als eerste hele jonge cellen aan. Die heten reticulocyten. Het zijn cellen die zich later omvormen naar rode bloedlichaampjes. Het aantal van deze jonge cellen bepaalt de toekomstige hoeveelheid rode bloedcellen. Dit aantal wordt al maanden in de gaten gehouden en is de afgelopen week enorm gestegen naar 248. Mede hierdoor verwacht de hematoloog dat ik (voorlopig) geen bloedtransfusies meer nodig heb en dat ook mijn Hb. nog verder zal stijgen.
We besluiten om eerst de prednison af te bouwen. Deze week over op een dagelijkse hoeveelheid van 40mg. Pas als de prednison is gestopt, gaan we weer proberen de Neoral af te bouwen en dan maar hopen dat de afstoting weg blijft.
Tenslotte geeft de hematoloog wel aan dat de stijging van de waarden deels is ontstaan door het gebruik van de medicijnen, met name de prednison/ De trend is wel dat het heel duidelijk de goede kant op gaat. 

Griepprik.
Omdat ik in de doelgroep (kwetsbare mensen) val, heb ik een oproep gekregen voor de griepprik. Al 3 jaar raadt de hematoloog mij (en de rest van ons gezin) aan om deze te halen. Nu geeft hij wel aan dat door het gebruik van alle medicijnen er enige twijfel is over de werking van het vaccin bij mij. Desondanks benadrukt hij het belang van de inenting. Wederom wordt ook inenting van de huisgenoten aangeraden. We hadden al besloten de prik te laten zetten. Morgen gaat het gebeuren. 


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