Weer eens een blog van Dolf. Samenvatting 4 maanden


Acute Leukemie (AML)
De laatste keer dat ik op dit blog heb geschreven is zeker zo’n 4 maanden geleden. 
En wat is er veel gebeurd in die tussentijd. De boodschap dat naast de Myelofibrose zich ook Acute Leukemie (AML) heeft ontwikkeld met de spoedopname de dag er op. Dag erna direct aan de zware chemo. Ik kwam heel beroerd binnen, maar na een week chemo begon ik op te knappen. Het eten ging wel minder en ik ben toen wel een paar kilo afgevallen. Na 4 weken op de afdeling hematologie was de  AML bestreden en mocht ik een weekje naar huis. 

Stamceltransplantatie.
5 mei opnieuw gemeld bij mijn oude vertrouwde hematologie afdeling (wat een fijne artsen en verpleegkundigen werken daar toch) voor een nieuwe spannende periode, de stamceltransplantatie! 
De eerste 10 dagen staan er weer een paar chemo kuren op het programma. Ik was gewaarschuwd voor zware bijwerkingen, maar rolde er goed doorheen. Tja, mijn haar inclusief baard viel uit, maar echt beroerd ben ik niet geweest.
Op 15 mei heb ik de stamcellen gekregen. Een belangrijke dag want vanaf die dag stopt het slopen van mijn beenmerg en start de opbouw. 
En toen….. plotseling zware complicaties o.a. aan hart en longen. Met spoed aan de beademing op de IC. En daar 4 weken liggen zweven op het randje van leven en dood. Midden in de nacht familie opgeroepen etc. De details kunnen jullie in voorgaande blogs lezen. Gelukkig er goed uitgekomen. Na nog een paar weken op de verpleegafdeling te hebben gelegen ben ik nu ruim 4 weken thuis.

Revalidatie.
Mijn arts is tevreden over de werking van de nieuwe stamcellen. Bij myelofibrose is het beenmerg wat versteend en kost het de nieuwe stamcellen meer moeite om bloed te produceren. Vandaar dat ik iedere 2-3 weken nog 2 zakken bloed krijg. 
Vandaag weer het wekelijkse controle bezoek. Hb 4,9. Dus gezakt onder de 5 en gelukkig hebben we al een afspraak voor een bloedtransfusie staan in de middag. 

Revalideren met een rollatorProbleem wat nog niet is opgelost is het gebrek aan spierkracht, en dan vooral in mijn benen. Ik kan nog maar een paar stappen lopen achter de rollator. Veroorzaakt doordat ik 4 maanden op bed heb gelegen. Twee maal in de week proberen we dit met fysiotherapie te verbeteren maar het gaat niet hard vooruit. Gelukkig krijgen we van alle experts te horen dat het goed komt, maar dat het tijd nodig heeft. 6,5 week IC en 4 maanden op bed “repareer” je niet zomaar…





DANK.
Al 3 jaar weet ik dat ik ziek ben. We hebben veel meegemaakt. Dit blog is een prima middel gebleken om met alle volgers onze belevenissen te delen, en om geïnteresseerden op de hoogte  te houden. Daarnaast hebben we in die 3 jaar veel steun ondervonden in de vorm van kado’s, telefoontjes, bezoeken, gesprekjes, berichten en kaarten. Daarvoor namens mij en mijn hele gezin 

164 gedachten over “Weer eens een blog van Dolf. Samenvatting 4 maanden

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