Controle

Op donderdag 15 augustus voor controle naar de hematoloog. Een week na de bloedtransfusie van 2 x 300cc zijn we heel erg benieuwd naar de hoogte van het Hb. Die zakte immers met 0,3 tot 0,4 punt per week en was onder de grens van 5 gekomen. De grens waarop men aangeeft dat een bloedtransfusie noodzakelijk is. Tja, en dan ben je dus in de categorie “bloedtransfusie afhankelijk” beland.
Routine is het inmiddels wel. Half uurtje van te voren bloedprikken en dan het gesprek met de hematoloog. Ik voel me de hele week nog niet veel beter na de bloedtransfusie, dus ik ben bang dat mijn Hb. niet echt veel hoger is geworden. Hij geeft gelijk de waarde. 6.4. Zo, dat is veel hoger dan verwacht. Men rekent met 0,5 punt per zakje bloed dus dan zou mijn waarde na de transfusie 5.8 zijn. We zijn al een week verder en we hielden zelf rekening met iets van 5.5 of zo.
Nu maar afwachten hoelang het Hb. boven de 5 blijft. Komt het eronder dan krijg ik weer een bloedtransfusie. Spannend. Duurt het 2,3 weken, maandje? Complicatie bij bloedtransfusies is dat er “ijzerstapeling” gaat plaats vinden. Het ijzer uit het bloed van de transfusie blijft in mijn lichaam en stapelt zich op. IJzerwaarde bij gezonde mensen is maximaal 250, ik zit al over de 550. Als het nog veel hoger wordt krijg ik medicijnen die moeten voorkomen dat dit ijzer voor altijd in mijn organen vast komt te zitten. De uitslag van de beenmergpunctie laat zien dat er zich geen leukemiecellen in mijn beenmerg bevinden, en de fibrose is niet of nauwelijks toegenomen ten opzichte van 1,5 jaar geleden.
Ik krijg verder medicijnen mee tegen de misselijkheid die de grote milt veroorzaakt doordat deze op mijn maag drukt. Hopelijk helpen ze want ik ben in 2 maanden 5 kg afgevallen.
Voor de trial neemt de verpleegkundige ook weer bloed en een vragenlijst af en toch best voldaan verlaten we na een uurtje weer het ziekenhuis. Nu pas (!) over 2 weken weer een afspraak.

Inmiddels zijn we weer een week verder. Ik moet zeggen dat ik me niet beter voel door de bloedtransfusie, en ik ga langzaam aan verder achteruit. De arts had aangegeven dat hiervoor niet alleen het lage Hb., maar ook stofjes die bij de ziekte myelofibrose vrijkomen, verantwoordelijk zijn. Redelijke dagen wisselen zich af met hele slechte dagen. Dat zijn dagen waarop ik niet meer buiten kom en alleen op bank/bed lig. Het is niet anders, het blijft een rot ziekte. Op de redelijke dagen kunnen we gelukkig nog wel met de elektrische fiets een eindje rijden en genieten we volop.
Zo langzamerhand moeten we toch rekening gaan houden met een stamceltransplantatie. Dat is de enige manier om deze ziekte te overwinnen. Daar gaan nog zeker vele maanden overheen, dus zal het wel begin volgend jaar worden.
Ook de medicijnen uit de trial (die ik na 24 weken mag gaan gebruiken omdat ik dan naar de andere groep in de trial mag gaan) zullen niet meer helpen de symptomen van de ziekte te keren, daarvoor gaat het nu te hard bergafwaarts.
Gelukkig werken de medicijnen voor mijn maag goed en heb ik weer meer eetlust. Nu nog even aankomen 😉

5.148 gedachten over “Controle

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  12. Zizzer Zazzer Zuzz / Pagans taught that man could become "godlike" with the attainment of knowledge and humility. Not any of that self-denigrating crap that religion teaches, not the false pride of being one of "God's chosen people". The Jewish messianic movement is what caused the trouble. Not consenting to worship the Emperor, not working on certain days, the Sicari assassins, the constant emergence of new "messiah" figures. The Roman's didn't burn down the Temple because of the pagans, my friend.

  13. "Yes, I realize an awful lot of Obama buttmonkeys have little to no regard for that document…"No one in D.C. does. Why do you think they locked it away in a vault. The thing is like kryptonite to the current crop of statist idiots from both parties.

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  34. PauvreFrance dit :John semble avoir l’insulte facile et un sérieux problème d’ autosuffisance. Comme je vous l’explique dans l’autre article, je pensais qu’il était journaliste mais vu sa réaction et son outrageuse confiance en ces certitudes ridicules : je pense finalement qu’ il est enseignant! Pire il a sans doute passé la CAPES mais s’est fait refouler? Quoique c’est vrai qu’en ce moment ils recrutent au rabais… A bon entendeur.

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  36. Amen Renee. I just started this in my own life (setting boundaries and distancing myself from friends and family who make me feel like crap) and I am a much healthier, happier woman because of it. Good on you my friend. And your doc sounds fab. Love the blue sweater.

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  38. While private institutions and business can discriminate anyone they goddamn want (Not? Oh, well), Deutsche Post is in a radically different position. They have now given up their role as ‘Common Carrier’, the neutral citizen-to-citizen delivery agent, and instead have assumed responsibility for the content of what they distribute. That’s a radical change.This, in turn, means they can (in principle) be held responsible for anti-Jewish or racist material from, well, a particular religion, should it be sent in the mail.That might be an interesting experiment to conduct.

  39. Hah !!! dziewczyno chyba coÅ› z tobÄ… nie tak jak takie pierdoÅ‚y piszesz, do pary z rozumem idzie zapewne twoja pisownia wiesz najÅ‚atwiejszÄ… rzeczÄ… na Å›wiecie jest napisanie artykuÅ‚y i co trzy razy w zdaniu napisac kurwa ale to pojebane . dla mnie byÅ‚a byÅ› kobietÄ… … ale nie jestes choc Å›urdaka brak ))

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  42. He'll be helping you with the Telegraph crossword anyday now Lucy……Gary if you get bored of Dear Deidre give me a shout and I'll sort you out some quality filmed entertainment….Don't worry too much about the kids teeth, they all fall out anyway, it's great to hear you've all managed to get some time together.As ever, we wish you a continued speedy and healthy recovery.Much loveThe Cherries

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  44. at the end – means we’re unlikely to ever agree. But it is that fundamental difference which I think informs both our view of independence and how we diverge in our thinking.And on your marriage thing – that doesn’t stack up at all. Being married, believe me, my independence is fundamentally compromised! (Incidentally, if Mrs H is reading this, that is not meant as a bad thing!).

  45. пишет:Информацию о флэшмобе выкладывала раньше, а вот заявку забыла подать сразу.Ссылки те же, что представлены в предыдущих комментариях.  ÃÂšÃÂ¸Ã‘Ð»Ð¾Ð²Ð° Людмила

  46. Belle tentative pour amalgamer ceux qui ont de légitimes raisons de critiquer l’adoption par les couples homosexuels (et bientôt la PMA, c’est l’objectif ultime) et l’extrême droite.Dévaloriser l’opposition à un projet, railler ses partisans, interdire les débats contradictoires, voilà de belles méthodes que ne renierait pas…l’extrême droite !

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  49. Dans les cas présent, c’est plutôt le Hamas qui cherche à discréditer le gouvernement palestinien dans sa demande de reconnaissance à l’ONU. Israël n’a pas choisi la date des tirs contre les militaires israéliens (qui ont commencé en octobre) ni celle de l’intensification des tirs de roquettes. À moins de considérer que c’est Israël qui s’envoie lui-méme les roquettes.

  50. I noticed no mention of the word “inflation” in the worthless article. So we will all be paying 76% a few years after it is passed.I read a much more scientific article by hard-core economists. They proved that a regressive tax policy (rates go down as income go up) would maximize economic growth and prosperity.

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  52. e MatzPenso sia cosa buona e giusta fissare un punto fondamentale, prima che nasca una diatriba inutile: è tecnicamente sbagliato definire scientifico o anti-scientifico l'ecologismo, in quanto esso non è una teoria ben definita, ognuno la pensa un po' come vuole a riguardo.

  53. It’s really easy and perfect for meat eaters and vegans alike. Or, if others want meat you could do a mini one using all the same ingredients but just substituting the proteins – same flavourings. Or use your own recipe but whack a tin of lentils in it. Sorry I missed your bagpipes this morning. Up to my neck in soup!

  54. Claudia,Thank you for posting; this is truly a most beautiful experience. Your yoga practice helped with the cleansing of cellular tissue that had built up emotional memory stored with in your body. The yoga practice helped you opened up the heart chakra. When this happens, dont hold back. This is a most wonderful experience. I had this happened to me after my first year of yoga practice, and it has been different ever since.Namaste

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  57. Torilpia: Takk for det. En fin kveld til deg også!Karen: Åh, det var hyggelig sagt. Og jeg er så glad for den fyldige responsen jeg har fått på dette innlegget. Man er jo litt ensom i lærergjerningen (slett ikke fysisk alene, men uten kolleger man kan drøfte ting med der og da), og da blir det ekstra viktig å reflektere litt rundt noen hendelser i ettertid. Det er en spennende øvelse å gjøre det i offentlighet, som her.

  58. Forgot to mention one incident in particular: Five anarchists who were heavily involved with Occupy Cleveland were arrested months ago. They were charged with plotting to blow up a railroad bridge. One of them has already pled guilty.Hate and violence. That is the Occupy movement.

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  64. Heh. The whole point for a social contract is that it is NOT written.We only write down parts of it when people don't follow it. Those written parts are called laws and we ask authority to enforce them. If goofy people obeyed the social contract we wouldn't need any of that. 8)(Yah… I know… There is no way that could happen in a real world.)

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  72. Of course, it would not have to be the cataclysm described by Benjamin N. If they brought it down, then the churches that have the church divided up among them could get rid of the old Turkish “status quo” and start over. It could be rebuilt in a way that would make it safe and beautiful, and maybe the Christians wouldn’t fight so much in it as they did in November.

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  77. Hi Michelle,This might be one of my favorites! I love stamping with leaf and tree designs. My husband and I have a tree farm here in Michigan, so I guess this is “only natural” to catch my attention. Thanks for all of the inspiring ideas. I hope I win this blog candy!! Kathy N.

  78. que tal me parece muy atractiva esta nueva alternativa de red social que ha lanzado google y me encantaría que me mandaran una invitación para formar parte de ella

  79. Hard to believe that there will not be the same old private sector snouts in the same old public sector trough, but that was a worthwhile effort Alex.I appreciate the reality that it's impossible for you and the LDs to demand much, but, if you've not done so already, perhaps in a follow-up to Cllr Robertson you could specify the minimum acceptable extent of democratic, or at least democratically accountable, oversight.And drop in some hint about the Cornish penchant for hogs pudding.

  80. I think those who are unhappy about this are channeling some of their past frustrations on this issue because of Rossi, Subotic and others. A little annoyance is justified but Timmy’s “snubs” weren’t as egregious as people have made them out to be. We don’t have the luxury of having ill-will towards good players. We need the best we can get at all times.

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