Medicijnen, Stappen vooruit, Familie.

Medicijnen.
Het heeft even geduurd, maar ik wilde wachten met schrijven tot de uitslagen van het controlebezoek van vandaag bekend waren. Excuus aan de trouwe lezers van dit blog. Ik heb van behoorlijk wat mensen berichtjes gekregen die verontrust vroegen hoe het ging. Dat kan ik me wel voorstellen omdat ik drie en een halve week geleden schreef dat de Graft toenam en dat er naast de afstoting aan mond, ogen en huid ook forse afstoting ontstond aan de lever. Toen begonnen met de Neoral (=ciclosporine 2x2ml per dag) en 3 maal daags 3x300mg Ursochol tegen de leverbeschadiging. Twee weken geleden de dosis prednison omlaag van 60 naar 40mg per dag. 
En gelukkig heeft dit allemaal een goed effect! Het mag duidelijk zijn dat we niet op de afstoting zaten te wachten, zeker omdat dit de ergste complicatie is die je bij een stamceltransplantatie kunt krijgen. We zijn er nog niet, maar het ziet er naar uit dat we de Graft onder controle krijgen. Mijn mond gaat langzaam iets beter, maar de gemeten leverwaarden liegen zeker niet en verbeteren sterk. De waarden zien er zo uit:
                                          12 feb       23 feb     9 maart
ALAT (normaal     <45)      685           258         98
ASAT (norm          <35)     223            86          41
Gamma GT (norm <55)     649           548         303

Dankzij de medicijnen duidelijk een trend naar beneden dus. We besluiten vandaag de prednison te verlagen naar 20mg per dag. Ik geef daarbij aan dat ik echt zeer vermoeid ben (kan 2-3 uurtjes per dag iets doen) en bang ben dat ik dat restje energie door de verlaging ga verliezen. Hematoloog is daar niet bang voor. Normaal maken je bijnieren ca 10mg per dag aan. Als mijn bijnieren niet meer werken, dan zal ik dat pas bij een verlaging onder de 10 mg merken en last krijgen van het gebrek aan bijnierschorshormoon.  De Graft is in mond, huid en ogen duidelijk nog aanwezig, maar wordt wel minder fel. Voor mijn ogen krijg ik oogdruppels. Even overwegen we nog een controle bij de oogarts, maar in oktober was alles nog goed. We wachten even het volgende bezoek en het effect van de medicijnen af.


Ondertussen ontstaat er toch nog een aardig lijstje aan medicijnen dat ik gebruik.
Dagelijks : 2x2ml Neoral (anti-afstoting), 3xmagnesium (tegen kramp in vingers/voeten/handen), 2x valaciclovir (antivirusmiddel), 1x co-Trimoxazol (antibacterie middel), 20mg prednison, 3x Ursochol (tegen afstoting lever), 4x 500mg paracetamol, 1x pantoprazol (maagbeschermer), oogdruppels en dan af en toe bij veel pijn oxicodon (morfine).


Overigens zijn we over de bloedwaarden best tevreden. Hb. 9.4 (normaal 8.6-10.7), Plaatjes 121 (normaal 150-450) en witte/leucocyten 6.3 (normaal 4-10). 
Er zitten nog wel andere problemen zoals de ijzerstapeling. Deze moet <250 zijn en is boven de 3300, maar eerst willen we de Graft onder controle krijgen voor we aan de overige problemen gaan werken. De vermoeidheid verklaart de arts door de medicijnen, de chemo of door afwijkende bloedwaarden zoals ijzerstapeling.

Stappen vooruit.
Sinds 2 weken probeer ik mijn conditie te verbeteren door weer stukjes te fietsen op de elektrische fiets en dat gaat goed. Eind vorig jaar probeerde ik het ook, ben gevallen en had geneusde ribben. Gelukkig gaat het nu dus beter. 
Een andere mijlpaal die we hebben is dat het bed, dat 8 maanden in de kamer heeft gestaan, is opgehaald. Ik heb hem niet meer nodig! Joepie!  

Familie.
Myelofibrose is een zeer zeldzame beenmergkanker die behoort tot de MPN ziekten. Deze groep bestaat uit 3 zeer zeldzame beenmergkankers MF, PV en ET. Bij MF, de vorm die ik had, verdwijnt het beenmerg en komt er bindweefsel voor in de plaats. Gevolg is gebrek aan alle soorten bloed, dus afname van energie, stolling en weerstand. MF komt voor bij 1 op de 100.000 inwoners. 

Bij ET vindt er een overproductie van bloedplaatjes plaats. Dit kan gevaarlijk zijn, omdat er dan zonder aanleiding stolsels kunnen ontstaan (plaatjes zorgen voor de stolling) en deze kunnen een herseninfarct of longembolie veroorzaken. 

Bij PV vindt er een overproductie van alle soorten bloed plaats. Hoog Hb, hoge weerstand en ook veel stolling. Hierbij is het risico op herseninfarct of longembolie dus ook aanwezig. Eigenlijk is bij PV de “thermostaat” kapot. Het beenmerg blijft bloed aanmaken, ook al is er genoeg. Na de nodige klachten is bij mijn vader van 88 jaar, PV gecornstateerd. Deze ziekte komt voor bij 3 op de 10.000 inwoners. Ook zeer zeldzaam dus. Er is gelijk gestart met de behandeling d.m.v. medicijnen. Gelukkig slikte hij al bloedverdunners, wat het risico op beroertes verminderd heeft. We zijn hier wel erg van geschrokken. De MPN ziekten zijn niet erfelijk, maar komen wel vaker voor in dezelfde familie. Wel heel bijzonder en toevallig…







520 gedachten over “Medicijnen, Stappen vooruit, Familie.

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