Moe…..en nieuwe medicijnen

Geplaatst op door Dolf van den BergCategorieën:Blog Dolf

Controle! Iets tegen vermoeidheid?
Vorige week weer een controle gehad. Wat dan op valt, is dat we ons geen zorgen meer maken over de bloedwaarden! Die zijn namelijk al geruime tijd redelijk goed en stabiel. 

Het belangrijkste punt dat we willen bespreken is de vermoeidheid. De 5-6 weken voor dit bezoek waren zwaar, heel zwaar door die enorme vermoeidheid. 20-22 uur per dag op bed of bank liggen en helemaal niets meer kunnen ondernemen is niet leuk. Misschien klinkt het voor sommigen onder jullie nog aangenaam, maar als je al 3,5 jaar ziek thuis bent, kan ik je vertellen dat het frustrerend is. De hematoloog, i.v.m. de vakantie een vervanger (de arts die gedurende 4 maanden opname mijn zaalarts was), was heel blij om me te zien. 
Ik gaf hem lachend een hand met de opmerking: “Dat is weer eens iets anders om mij verticaal te zien in plaats van horizontaal, he?”  Bloedwaarden waren inderdaad stabiel (Hb. 8.8, trombos 136, leuco’s 5.6)

Na een test van mijn bloeddruk die liggend en staand gemeten wordt, komt hij snel tot de oorzaak van de vermoeidheid. Een “prednison kater”.
Hij wil de prednison die ik nog slik, 5mg om de dag, niet verder verhogen i.v.m. de bijwerkingen. Vrijwel zeker weet hij dat de bijnieren niet goed werken waardoor er totaal geen energie in mijn lichaam zit “het is onvoorstelbaar wat jouw organen allemaal te verduren hebben gehad”). Ik krijg hydrocortison voorgeschreven (40mg per dag). Een bijnierschorshormoon net zoals prednison alleen minder bijwerkingen. “Als het binnen 3 dagen niet werkt, er mee stoppen en contact opnemen”.


PromotieBanner_336x280px_VZVZVanuit het ziekenhuis bel ik mijn lokale apotheek of dit middel op voorraad is. Stel dat het werkt, dan wil je er natuurlijk wel zo snel mogelijk mee beginnen. En ja hoor. We kunnen het direct ophalen. Omwille van de bewaking op het medicijngebruik (wat mag ik met elkaar gebruiken) probeer ik alle medicijnen bij de lokale apotheek op te halen zodat die daar de medicatiebewaking kunnen doen. Onvoorstelbaar hoe knullig de uitwisseling tussen artsen/voorschrijvers en apotheken in deze regio is geregeld. Faxen en overtikken in de eigen systemen. Lekker 2015. Jammer dat ik ziek ben en niets kan ondernemen, maar hier in de Utrechtse regio zou een organisatie als Sleutelnet (www.sleutelnet.nl) uit Leiden (mijn oude organisatie) van grote waarde kunnen zijn met het oog op kwaliteit en efficiency in de zorg.
Velen maken zich hierbij zorgen om privacy. Ik maak me veel meer zorgen dat ik een keer een medicijn krijg voorgeschreven dat niet samen gaat met (één van) de andere medicijnen die ik slik. Dit kan tot forse complicaties leiden. 

En dan nu het goede nieuws! Het medicijn doet zijn werk redelijk. Hierdoor heb ik wel iets meer energie gekregen en kom vaker het bed uit. Keertje naar de winkel, wandeling, naar de stad. Altijd maar één ding op een dag en hooguit 1 à 2 uur per dag, maar dit is zo’n groot verschil met op bed liggen dat we allemaal helemaal blij zijn. Maar er zijn meer voordelen aan het medicijn. Door meer beweging krijg ik mijn spieren weer terug die ik de afgelopen 5 weken ben kwijt geraakt, en ik heb veel meer eetlust. Al maanden probeer ik aan te komen en nu gaat het ineens goed. Ik eet veel en ben in 1,5 week 2 kg aangekomen. Eind juli woog ik 67 kg. Nu 79! Op naar de 80.

2015
Beste lezers, mede namens mijn gezin wens ik jullie allemaal een fantastisch 2015. Al 3 jaar proosten we op een gezond en beter nieuw jaar, maar om eerlijk te zijn is dat niet zo erg gelukt…..

Fijn is het om te melden dat er heel veel mensen om ons heen zijn die al heel lang, vaak dagelijks en soms in een groep, bidden voor een betere gezondheid voor mij en kracht voor mij en mijn gezin. Dat raakt ons wel en doet ons goed. Bij deze dank hiervoor. Heel betrokken en lief.

Spannend…. afstoting?
In het blog van 24 oktober 2014 heb ik uitgebreid beschreven welk risico iedere patiënt met nieuwe stamcellen loopt op het gebied van afstoting (de donorcellen vallen mijn lichaam aan). Dit heet Graft versus Host ziekte en kan dodelijk zijn. In oktober had ik het medicijn dat deze afstoting tegen moet gaan afgebouwd (is de bedoeling dat ik zonder dit medicijn verder ga leven). Een week later werd mijn huid afgestoten. Koorts en uitslag. Mijn huid is nu donker gekleurd door iets dat op sproeten lijkt, maar dankzij de medicijnen (ciclosporine en prednison) is er geen verdere uitbreiding. Bekend is dat huid, lever, longen, darmen en ogen aangetast kunnen worden. Nadat de afstoting tot stilstand is gebracht, zijn we de medicijnen langzaam af gaan bouwen. Ik begon met 2x3ml ciclosporine en zit nu op 2×0,75ml per dag. 

En het is zo spannend….. Als het lichaam verkeerd reageert en er ontstaat weer verdere afstoting dan moet je er heel snel bij zijn, hopen dat de medicijnen het tot stilstand brengen, en maar afwachten of het niet chronisch wordt, want dan zit je er je hele leven aan vast (beperkte longcapaciteit/ogen iedere 5 min druppelen/altijd diarree/overlijden). Juist deze spanning maakt dat bij een beetje jeuk of een tranend oog, iets dat iedereen wel eens heeft, de schrik je om het hart slaat. Tot nu toe gaat het goed. Volgende week waarschijnlijk naar 2×0,25ml en de week erop naar nul. 

De impact van deze spanning is echt groot. Het bepaalt in grote mate hoe onze toekomst er uit gaat zien. Zit je niet in “dit wereldje”, dan is het haast niet voor te stellen waar we nu midden in zitten.








Blijf lezen

Dec 24, 2014Kerst!Feb 1, 2015Goed nieuws, slecht nieuws

163 gedachten over “Moe…..en nieuwe medicijnen”

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  51. #81 – Cindy – But I’m paying for electricity to charge the thing right?Pay no attention to the man behind the curtain!I imagine in some places the costs of generating the electricity could be super cheap and clean. Think the TVA or wind/solar farms.Most other places will be using coal or oil to generate the power though. Hopefully it’s less polluting and more efficient (?), but really just transferring the source of the pollution to a centralized location.

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  58. Megan Posted on I laugh at the things my 1st grade friends say all the time. Every Monday we do share day, and thank goodness they know how to go in number order and can manage it themselves. I sit with my back turned a little and pretend to file papers so I can get my Monday laughs in.

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  73. Hey Nyounai!That’s my aim with 4CT too, to create a platform for horizontal and pro-active learning interaction. I’m still to create a data-base on 4CT to support these aims. But I would happily support other platforms too. I think it’s a great idea! The more places (virtual and real) for us to learn and discuss the better for capoeira as a whole.Axé!Eurico

  78. Hola amigo necesito que me ayudes por favor hace 3 años no tengo novia por ser tan tímido y siempre siento que no soy suficiente para ellas yo no se que hacer y las novias que e tenido las e perdido por aburrido, inseguro y las respeto demasiado al punto que no hago nada de sex… a veces siento un poco de envidia al ver a mis amigos con un montón de chicas y yo nada….por favor mándame unos concejos a este correo si quieres.

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  84. dit :Faire jouer l’assurance annulation ??!!!Ahahaha quelle blague !Saleté tiens !PS : Poste des photos que si tu es sûre de ne pas nous rendre encore plus aigri(e)s que nous ne le sommes déjà …

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  92. Shannon, The Lords love is so evident in your writing!  It reaffirms in my heart that He is mindful of us and our happiness is important to Him.   Your sensitivity to the promptings of the Spirit is a great lesson for all of us!Angela, thank you for sharing Shannon’s story, she is one of my favorite blog friends!

  94. ENIPreso profitto su ENI al 4,76 % sul balzo iniziale di stamane che mi ha colto impreparato . Ero long dal 26/6 quasi dal fondo della correzione e pensavo di restare long, ma trovarsi in mano un gain così di questi tempi……… ho avuto paura di vederlo sparire. Come da report , i segnali di continuazione su ENI e sull’indice ci sono……spero proprio che non ci sia un lunedì nero a questo punto…………….. Come imparato qui non rientro oggi e aspetto la prossima settimana.Buon fine settimana

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  100. that the SCOTUS got it wrong on the definition of 'natural born citizen'. He HAS suggested that the Court, in US v Ark, got the definition of 'citizen' wrong. However, he understands that what the SCOTUS says, goes…which is why he agrees that Obama IS a 'citizen'…just not 'natural born'. Do we need to provide cliff notes for some of you out there? 🙂

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  111. S says: “Again, I will ask monarchist this question: if Republics are so bad and unstable, why do most royal families send their children to Switzerland to be educated or flee there when war breaks out in their own countries? Unus pro omnibus, omnes pro uno!”Can’t think of any royal family that sent it’s children to Switzerland to be educated and don’t know any royals who fled their in time of war. Please tell. And what have The Three Musketeers got to do with the topic?

  116. Not a guy Cathy, and you know full well those comments I made about your appearance, we’re in direct response to your comments about Paris Lee’s appearance, so before you go calling me out on something and saying how bad I am, check you’re not guilty of the same thing yourself, otherwise you just show yourself up as being a hypocrite.

  117. Jejda, tak to jste mne zaskočil. Ale asi myslel jen v PS, protože se tím evidentně snažil naznačit, že kdyby to toho 29.10. schválili, tak by to stejně nic neznamenalo a o nic nešlo.Já myslím, že se to bude odvíjet od toho, jaké instrukce dostanou od US ambasády, či od svého řidícího důstojníka.

  121. It could be an Easter because I remember some really snowy Easters in the 1940s. There was a huge snowstorm on Easter weekend in 1947 that I can remember….snow like we have had now—wet and yucky and very heavy.People always went outside for the pictures—no flash cameras back then and not very sophisticated ones at that. My folks had a huge old Kodak box camera for years.

  124. Having had trouble getting pregnant, I can relate to what she has gone through. It is truly a blessing to be a mom and I am thrilled for the family. Jade is a wonderful name because that is what the parents wanted. How exciting to see a child so loved. Some criticism on here just shows how unhappy some people are in their personal life.

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