Hoe gaat het nu? Griep, hematoloog, ferritine

Hoe gaat het nu?
Dit blog is een beschrijving van ons leven met kanker, ups en downs. Ik probeer daarbij een reëel beeld te schetsen van alle medische ontwikkelingen, maar ook de sociale aspecten en hoe het leven als/met een “kankerpatiënt” er uit ziet. Ben nu 4 jaar ziek en vrijwel altijd positief. Niet gespeeld, maar gewoon omdat ik gelukkig die karakter eigenschap heb. De laatste tijd zitten we er doorheen en dat is goed te lezen in het vorig blog. Velen hebben dat opgepikt en we hebben er veel positieve reacties op gehad. Dank daarvoor! Wordt gewaardeerd.

Griep.


Dankzij de penicilline was de koorts met een paar dagen weg. Ik bleef me wel beroerd voelen en heb bijna 2 weken op bed gelegen. Vorige week zaterdag was er de jaarlijkse bijeenkomst van de MPN stichting waarvan ik inmiddels veel mensen ken (die ziekte is toch belangrijk geworden in mijn leven). Ik wilde er gewoon heen. Natuurlijk was ik koortsvrij want er lopen daar toch vele zwakke patiënten rond. De ochtendsessie volgehouden, lekker bijgekletst tijdens de lunch en daarna zijn Marjolein en ik snel naar huis gegaan. Zondag nog even koffie gedronken bij mijn ouders die ik ook al 2 weken niet had gezien, maar daarna voelde ik me in de loop van de zondag weer slechter worden. 
Voor dinsdag een afspraak gemaakt bij de huisarts. Op één van de longen hoort ze een raar geluid, mijn oren zitten dicht en de vermoeidheid is hopeloos. Ze geeft aan dat ze wil dat de hematoloog er naar kijkt. Direct bel ik met hematologie UMCU en vraag of de afspraak van volgende week donderdag naar voren kan schuiven. Wat zijn ze klantvriendelijk daar. Tuurlijk, ondanks de volle agenda kan ik donderdag kwart over 10 terecht. Ik breng de tijd verder door op bed. Beroerd en weer met koorts.

Hematoloog.


Om half 10 laat ik bloed prikken en o, wat ben ik opgelucht dat ik deze afspraak heb gemaakt. Voor tienen worden we al naar binnen geroepen. Hij hoort mijn klachten aan en pakt gelijk door. “Ik splits het in 2 dingen, korte termijn het virus weg krijgen, langere termijn je hoge ferritine en de daarmee waarschijnlijk samenhangende vermoeidheid.”

Het virus. Longen luisteren, hij hoort ook een ruisje, wil een longontsteking uitsluiten en we moeten daarom meteen een longfoto laten maken. Ook geeft hij een 2e antibiotica kuur met een ander type antibiotica.

Ferritine.
Bij de bloedwaarden is het Hb. met 9.6 prima, twee weken na een aderlating! Wat er niet goed uit ziet zijn de leverwaarden. Ze zijn aanzienlijk slechter dan 2 weken geleden en dat zou best komen door het hoge ferritine. Langdurig hoog ferritine beschadigt lever en hart. Ook hier besluiten we door te pakken. Omdat mijn beenmerg voldoende bloed aan maakt kiezen we er voor om de komende 3 weken 1 maal per week een halve liter bloed af  te laten tappen. Totaal 1,5 liter bloed kwijt in 3 weken. Over 3 weken weer een controle afspraak bij de hematoloog.
Op de terugweg lopen we langs de afdeling radiologie. Daar weten ze al dat ik kom. Binnen 5 minuten is de foto gemaakt en een uur nadat we het ziekenhuis binnen kwamen, lopen we weer naar de auto. Bloedprikken, gesprek met hematoloog en röntgenfoto achter de rug. Ja, ook dat is het UMCU. Hetzelfde UMCU dat zo negatief in de pers kwam deze week. Iedereen die mijn blog leest, zal weten dat ik me totaal niet herken in het geschetste beeld.
Op de terugweg halen we in onze apotheek in Montfoort de nieuwe antibiotica op en rijden we naar huis. Gelijk mee beginnen!
Omdat de afstoting er nog wel is, maar niet erger wordt, besluiten we om de Neoral (zwaar anti-afstotingsmedicijn) te verlagen van 2x1ml naar 2×0,75ml per dag. Eens kijken welk effect dat heeft.

Ferritine.
Het bepalen van het ferritine duurt 24 uur dus de laatste waarde weten we nog niet tijdens het bezoek. Vanmiddag heb ik ingelogd en gekeken. Het ferritine is ondanks het aderlaten GESTEGEN van 3.994 op 20 oktober naar 5.066 gisteren. Dat is echt heel slecht. De waarde moet liggen tussen de 25 en de 250! Ruim 20x het maximum! Dit is zorgwekkend want de kans op lever en hartschade neemt nu toch echt toe. 
De arts zal binnenkort wel contact opnemen om de uitslag van de foto en het hoge ferritine te bespreken.

Waarom is het ferritine zo hoog?


Op dit blog heb ik het al vaker geschreven. Mijn ferritine is zo hoog geworden door het grote aantal bloedtransfusies (meer dan 80 schat ik) toen ik vorig jaar bloedtransfusie afhankelijk was. Met deze zakjes bloed die ik heb gekregen krijg je per zakje ook wat ijzer van de donor mee en dat ijzer kan je lichaam niet meer uit zichzelf verwijderen. Door aderlaten laat je per keer 500cc weglopen met hierin ook het teveel aan ijzer. Voorafgaand aan iedere aderlating wordt door het lab de waarde van het Hb bepaald. Als deze waarde hoog genoeg is, mag er bloed afgetapt worden. Zo niet, dan is een aderlating niet mogelijk.

181 gedachten over “Hoe gaat het nu? Griep, hematoloog, ferritine

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  79. What an awesome time!!! Love the pictures … thanks for sharing them. And, how sweet of your family to throw a celebration in your honor – – love it!!! Congrats again! Glad you had a great trip!

  80. Veo que comenzó un curso la semana pasada y estaba muy interesada, pero por razones de salud (embarazo gemelar) debo guardar reposo al menos un mes más (hasta el nacimiento), deseo que me informen si a lo largo del año suelen repetir el curso y cuando podrá ser. Gracias. Atentamente. Laila

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  85. Caligula dit :David** Pourquoi les programme de recyclage des villes sont déficitaires alors ? **Peut-être mal gérés. Peut-être qu’on pourrait automatiser. Je sais pas, je ne me suis pas penché sur ce problème. Mais il existe sûrement une solution.Ce que je sais c’est qu’une compagnie comme EMCO réduit ses coûts en utilisant 75% de papier recyclé pour fabriquer son bardeau.NicolasJe ne connais pas Aron et Raymond Boudon, mais quand j’aurai le temps je vais en prendre connaissance.

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