Chronisch ziek!

Terug geweest bij “mijn eigen” hematoloog. Weer vooraf bloed geprikt en de waarden blijven inderdaad nog steeds behoorlijk stabiel. (Hb is weer iets gezakt (6.3),de witte bloedlichaampjes zijn iets gestegen (2.7) en de plaatjes (128) iets gezakt). Zo raar. Dit hoort helemaal niet bij myelofibrose en de artsen denken echt dat het komt door de bacterie aanval van februari!

Het is definitief. We stellen de stamceltransplantatie uit!

De argumentatie hiervoor staat uitgebreid beschreven in het vorige bericht (van 1 september). Ben er echt wel blij mee, maar de consequenties van dit besluit zijn ook zo groot.

Het begint al direct tijdens het gesprek in de spreekkamer met het “vrijgeven” van de donor. Meer dan een half jaar heb ik daar “een optie” op gehad. Daarna wordt er, weer direct tijdens het spreekuur, een brief geformuleerd voor mijn huisarts en mijzelf, waarin de hele medische situatie inclusief laatste bloedwaarden, wordt beschreven. Deze brief is straks ook nodig voor de bedrijfsarts en het UWV. In deze brief staat het klip en klaar “mijnheer wordt niet beter, en in de toekomst moet ook nog rekening worden gehouden met een stamceltransplantatie”. We wisten het wel, maar het is wel hard.

TOEKOMST
Heb me nooit druk gemaakt over de toekomst, maar nu zou ik toch graag even een periode vooruit kijken. Blijven mijn bloedwaarden zo? Worden ze slechter? Zoja hoe snel? Stamcel? Zoja wanneer? Moet ik, nu nog een aantal zaken van mijn “things to do in life lijstje” gaan realiseren voor het te laat is? En wat ga ik met mijn tijd doen als ik niet kan werken? Moet in ieder geval een uitdaging zoeken waarvoor ik de goede dagen kan gebruiken. De slechte kom ik nu al niet meer van de bank….
Hoe blijf ik in conditie? De conditie die ik de afgelopen tijd heb opgebouwd moet ik wel zien te houden, mocht er een stamceltransplantatie aankomen.

Waarschijnlijk is het menigeen overkomen. Vorige week mijn pincode 3 maal fout ingetoetst. Normaal denk je dat is dan jammer, nu vraag ik me af of het door concentratieverlies komt. Zo heb ik nog wel een paar voorbeelden….

FEESTJE
Vorige week een etentje gehad met mijn collega’s van andere regio’s en landelijk coördinatoren. Een aantal zijn hier thuis al op visite geweest, maar de meesten had ik al een jaar niet meer gezien. Was erg gezellig, maar o, wat zou ik graag weer in de zorg en ICT aan de gang gaan. Ik wil wel, maar het kan/gaat gewoon niet.

UWV
Vandaag de brief van de bedrijfsarts gekregen. Alle papieren heb ik net bij elkaar gezocht en morgen dan maar een aanvraag naar het UWV uit doen. Ik word niet meer beter! Wat is dat erg, maar het is niet anders. Ik ben er nog en dat hadden we in februari zeker niet verwacht. Dat relativeert natuurlijk wel lekker gemakkelijk.

ONDERZOEK
Vele artsen en onderzoekers in binnen-/ en buitenland zoeken naar een oplossing voor deze rotziekte (zusje van leukemie/bloedkanker). Nu mijn bloedwaarden stabiel blijven loop ik wel steeds rond met in gedachten dat er iets bijzonders met me is gebeurd, en dat er misschien een (deel)oplossing is te halen uit mijn casus. Heb vorige week via de MPN vereniging in de VS contact gezocht met een arts/onderzoeker daar om de gebeurtenissen onder de aandacht te brengen. Heb mijn eigen hematoloog aangeboden om “mijn lichaam ter beschikking te stellen aan de wetenschap”.
Maar wel bij leven natuurlijk! Onderzoek me maar, mogelijk vinden we een (deel) oplossing.

ZEILEN
Dit weekeinde even alles vergeten door lekker te zeilen met mijn dochter, vrienden en mijn tennisteam. Mogelijk het laatste weekeinde dat dit kon, de herfst is begonnen.

Electronisch Patiënten Dossier (EPD)
Nog even een klein stukje over het raakvlak met mijn (vroegere) werk.
Het ziekenhuis gebruikt het EPD volgens mij best goed. De artsen, maar ook verpleegkundigen, noteren voor zover ik het kan zien, alles direct in het systeem. Dat bleek in ieder geval wel toen de plastisch chirurg ook op de hoogte was van een telefonisch overleg tussen mij en een wondverpleegkundige. Was keurig verslag van gedaan. Ook de ordercommunicatie tussen hematologie en lab, maar ook poli en radiologie gaat volledig digitaal. Leuk om te zien dat een product (Chipsoft-EZis) dat onder mijn verantwoording als ICT-manager in een ziekenhuis precies 11 jaar geleden als eerste is geïmplementeerd, zo is uitgegroeid. Ongetwijfeld zijn er nog vele wensen, maar intern is bij dit ziekenhuis toch een slag geslagen. Nu de regionale en landelijke communicatie nog! Tja, ik heb mijn bijdrage geleverd om kwaliteit en efficiency in de zorg te verbeteren door de inzet van ICT.
Zoals het er nu naar uit ziet zal ik voortaan een patiënt in de systemen zijn in plaats van een verbeteraar van de zorgprocessen.
Jammer, maar that’s life. Niemand iets te verwijten, het loopt zoals het loopt.

BLOG VERVOLG
Naar verwachting blijft de situatie de komende maanden stabiel. Ik zal dan ook niet zo vaak meer op het blog schrijven als voorheen. Natuurlijk blijft het on-line en zullen we wat van ons laten horen als er wat te melden is.




DANK
Iedereen (natuurlijk te beginnen met mijn gezin) heel hartelijk dank voor alle steun! Het is fijn om te weten dat er zoveel mensen met ons meeleven.

489 gedachten over “Chronisch ziek!

  1. Tjee… heen en weer slingerend tussen een 'gelukkig hoef je nog niet aan zo'n ingrijpende behandeling te beginnen" en het "shit chronisch ziek, wat nu verder?!" en de "dit is eigenlijk niks voor Dolf, niks doen" lees ik je update.
    Gemengde gevoelens, net als jullie ongetwijfeld. Wel mooi om te lezen hoe trots je ook nog bent op je werk, dat EPD bv… en het meewerken aan een (deel)succes(je) van jouw ziekteverloop. Weet je Dolf, ik voel me bevoorrecht; Bevoorrecht dat ik je ken en van enige nabijheid merk hoe sterk, dapper en nuchter je kunt zijn over je toch uitzichtloze situatie van nu en wie weet hoe lang… Ik hoop vanuit de punten van mijn tenen dat er "iets" komt waardoor die 70% kans nog veel groter wordt en dat er een moment komt dat de artsen zeggen dat ze je kunnen genezen middels de stamceltherapie of wat dan ook. Misschien niet heel reeel op dit moment, maar ik wens het jullie van ganzer harte!!
    Ik blijf je blog volgen en hoop jou en/of marjolein zo af en toe te spreken, dan houden we elkaar op de hoogte van alle wederwaardigheden.
    En nog als reactie op je eigen dillema of je nu moet gaan voor alles wat je nog ooit had willen doen; probeer het gewoon vast wat te doen, dan kun je in ieder geval iedere keer weer terugkijken en nagenieten. Dat heb je dan vast in de pocket! En nu heb je misschien er nog meer energie voor dan later?! Veel wijsheid en geduld gewenst!!
    Liefs Ingeborg

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