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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  3. SOOOOOOO JEALOUS!!!! I have been wanting to see this since it began, Defying Gravity is one of my favourite songs ever but unfortunately my London Theatre days have been numbered since the children came into my life. I’m hoping it will still be around in about 5 years when the purse strings have slackened. Has it still got the lovely lady in it from Dorothy? I liked her!Mummy Matters recently posted..

  4. Parabéns Julia você mereceu.Dr. outro dia citei que a tabela deveria ser dirigida, tipo 1×20, 2×19 assim por diante.O sr. me respondeu que não daria devido a logística.Só que quis dizer, tabela dirigida em relação ao ano anterior. Por exemplo comparando com o ano passado, o primeiro jogo deveria ser FluxAme-MG a penultima FluxCor e a última FluxCru, elaborada com antecedência. Sendo assim o Timão enfrentaria Cru, Flu e Am-MG nas 3 últimas rodadas.Abraços…

  5. Good day! This is my first comment here so I just wanted to give a quick shout out and say I really enjoy reading your articles. Can you recommend any other blogs/websites/forums that cover the same topics? Many thanks!

  6. You have such lovely colors and textures in your spring garden! It is nice to see all those colors when our colors are fading with the onset of autumn. I am looking forward to my borage in the spring! Happy GBBD!

  7. Hi Kevin,Just curious – if U would stand again on the Olympia stage – do U have to start over some qualifications before or u just make announcement of Your return to pro?Grets from Poland

  8. "trail-blazers for the new economy" – I LIKE that one, Keren, and will remember it.Savita – yes, a really pithy one-liner would be good. I'm like Rabbit in Wind in the Willows, always thinking of something to say an hour after the event. Suggestions, anyone? Maybe we should have a little competition! *thinks*

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  11. Da, mie îmi place foarte mult ce face Bansky. E un contrast fascinant între ideea de grafitti, duritatea acestui gen de artă născută pe străzi, pe care el o execută cu delicatețe, îmbinând idei șocante cu lucruri simple.

  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.

  14. The Beatles were the first group I can remember being exposed to from my uncles copy of Meet the Beatles that my Gandmother had at her house. I worshipped them for a long time and John was always my favorite. I agree WCH is a tremendous song and the lyrics really are good. Green Day did a worthy cover not to long ago.

  15. Our family’s prayers are with Abby tonight. Poor baby.As for the caption:”Aha! Another baggie of fritos. No one will ever suspect an innocent, sedated, frail (not to mention CUTE) cancer patient of snitching the stash!”

  16. Ah, a resenha ficou excelente!!! Ainda por cima apresentou todos os produtos!!! Viu como ficou mara??? Parabéns amiga, vc leva sim jeito pra coisa, mais do que eu inclusive que vou fazendo, fazendo sem me preocupar muito!!! Realmente está de parabéns!!! Beijos linda!!!

  17. I’ve been following your blog and I love it! I’m also a PA girl living in Chicago (I’ve been here for about 8 years though) and will be running my 4th Chicago Marathon this year. Good luck! You’ll be fantastic!

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  20. / -El Dragón es poderoso pero puede ser vencido con la unión de todos y nada ni nadie puede quitarnos nuestro sueño, nada ni nadie puede dejarnos sin nuestro San Jorge.-Es verdad, el mensaje ha llegado incluso sin que hablaran de UPyD.-Hay voces que no tiene fronteras y no pueden ser calladas.-Éso es verdad.-Ya ves.

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  24. Slicing the chart to include only Jan 2005 to Jan 2009 would illustrate how we’ve “hot bottom” and now is “a great time to buy” as “affordability is at an all time high” and “real estate is a good investment over time.”Q: you have invested a new bi-ism…congrats…truly excellent….I would put it up there with the pant-up….

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  27. I will never support, now or ever, the inhumanity of the misuse of the beautiful animls, cats, dogs and yes even mice or rats. Stop the inhumanity and remember God gave us these animals to enjoy and to entertain us, not to misuse and take these animals for granited. God bless these craetures of the world who cannot fend for themselves. I believe I am an advocate for all animals so what can I do?

  28. kati szerint:Kedves Szilvi!Nagyon szépen köszönöm a válaszodat!Tejinkontinencia esetén a vajat vagy a margarint használjam? 3 hónapig szigorúan kéne tartani a mellőzését bizonyos anyagoknak, hogy ezek a mikrosebek begyógyulhassanak, utána módjával már fogyaszthatók- a szakember is ugyanazt mondta, amit te leírtál. A vaj esetében viszont patt helyzetben vagyok.Köszi a választ! Nagyon szép napot!

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  30. Can we just talk about how much I love the pops of color in this outfit?! The necklace, the skirt, and the bracelets – it’s all just so perfect mixed with closet staples like the striped shirt and jean jacket. By the way, way to pull off a jean jacket! Envious.

  31. Hehe, I think the sandbags and other flooding gear are a sad sign of the failings of the great British summer! I think you are a bit better off in France! Thanks for reading…

  32. Wir haben gar nicht miteinander gequatscht. Das ist echt schade, doch so viele Münder und Ohren, wie Frau dafür gebraucht hätte, haben wir leider nicht. Beim nächsten Mal wieder. 🙂

  33. Karakter olarak hırslı bir adam olduğu ve tecrübe dolu bir oyunculuk kariyeri olduğu için iyi bir teknik direktör olabilme ihtimali var hakkaten

  34. The Nikon D200 10.2 megapixel is intended to include more features than any other camera in its class, permitting fans to take footage in a fashion that once was just for execs. The generous 2.5′ rangefinder offers a bright and easily read screen with enough magnification for on an improvised basis red eye reduction and light revising.

  35. Gestern angekommen, kurze Ruhezeit im Keller (die Neugier ist kein guter Entkorker…) und: Freude!!! Vorab: für den Preis ein echter Tip. Durchgehend voller Kraft, Frucht und Ehrlichkeit. Kein komplizierter Kram, sondern ein ehrlicher Begleiter. Frisch, sauber, knackig.

  36. Me quedo helada leyendo esta entrada tuya. Sigo poco El País porque hace mucho tiempo que dejó de ser ecuánime al menos en sus informaciones, no sólo cómo las cuenta sino cómo las selecciona.Lo que cuentas es indecente sin paliativos.Un beso

  37. Actually, many of those items you’ve been buying may just help you find the right interior decorating style for your home. Pull them out and try to group them by similarities. Then, step back and take a look at them and thanks for the post.

  38. 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.

  39. Jocke: Tror inte du har nÃ¥t att oroa dig för sÃ¥ länge du förstÃ¥tt innebörden av orden “nej” och “sluta”. SÃ¥nt där tjaffs som att “hon bara anmälde mig fast hon var helt med pÃ¥ det” är bara en vÃ¥ldtäktsmans försvar och skitsnack.

  40. 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.

  41. Yo! Posted on Obs: não saiam chamando os outros de nooob se vc não eh bom no q faz , soh pra começar esse blog nem verifica se o email existe antes de postar comentarios ,isso evita posts de babacas e polemicas inuteis ,adm e afins tem q corrigir erros não ficar de blabla bla Owned!!!

  42. 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.

  43. 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 ))

  44. Great read as usual. By the way, you're not still planning on WS100 this weekend are you? I haven't seen anything about it on your blog in awhile, but your name is still on their entrant list, so I'm just curious.

  45. havuzu deniz suyu olması iyibir artı. hem oldukça da temiz. beklentısi yüksek olmayan lüks istemeyenlere göre. ocivarda benzer yerler de var. ama bahçesi ve havuzu böyle güzel değ tekrar gitmeyi düşünüyoruz

  46. CLIQUE.11/01/2011.Um minuto de reflexão.Veja se você tem a condição de viver sozinho no planeta, e vai perceber o quanto a vida física é frágil, você perderá a vontade de viver, porque nada mais tera valor.

  47. 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

  48. Esses tempos eu vi em papel higiênio o rostinhos caricaturados de alguns noivinhos… achei legal..mas é uma coisa que eu não faria para os meus convidados. rsBeijos,Adorei o seu blog.Fernanda.

  49. 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!).

  50. 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

  51. 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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  54. 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.

  55. 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.

  56. I has progressed to a brand new place hereI do not anybody here. The folks at the office dont really spend time in the evening given that they have familiesHow do you start meeting women here? I can not find any clubs obtainable in the occasions I’ve freeI am not religious, so chapel isn’t a choiceI simply do not understand how many people can get inside a relationship and that i can’t. Could it be because I am really short?

  57. 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.

  58. 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!

  59. 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

  60. Apologies Carolyn, I thought I had put the name Garrya elliptica in my post for the bush with tassels, I have now rectified it. I prefer to have my snowdrops flowering from Christmas onwards, when there are not many other plants flowering. When starting my collection I deliberately chose the winter flowering ones, I think I must stop buying them, 70 plus varieties is more than enough for anyone!

  61. I done a bunch of terrible things, and I almost 2 years old. Think how bad I be then? I has raised bein’ bad to a science.I done all da normal stuff like chewin’ up moms shoes and chewin’ da sleeves off her FAV sweatshirt, but da worstest thing I done is:I EATED ALL DA BIRDSEED IN DA BIRDSEED SACK. I pooped birdseed for a week and had to go to da vet and cost mommy a couple of hundred dollars. I poops was very, very pretty for about a week.

  62. 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.

  63. 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.

  64. ha parce que ca aussi ca etonne certains? lol mais c’est flagrant depuis le début deja pourquoi pensez vous qu’on vend une technologie pareil? pour vous simplifier la vie?les élites s’en foute bien de vote vie et vos galères en tant que produit mercantiles il faut vous étudier point finalun peu comme des vulgaires gens de facebook c’est un autre processus –

  65. Hey I understand Hw u feel mann!!! but I cant donate coz I dnt hv a debit card yet!!! but ill surely do whn I get one!! I think in Nov this year!!! BTW y leshcat has password protected the 12.x jun 12 driver??

  66. Thats a great post you made there. I didn’t know of that until i read your blog post. Christmas is around the corner now and i’m trying to look for a Zhu Zhu Pet hamster for my daughter and a Mindflex Game for my Son…

  67. Don Rafael, no se altere, que no vale la pena, a estos tíos simplemente n se les hace caso, ¿para qué? Cada vez tienen menos clientes, y al paso que van, en cuatro días se quedan solos. Ellos se habrán ganado. A pulso.

  68. EXACTLY! My blog is like yours except that as I don't yet have the guts to approach senior citizens, my photos come from wider sources and my own are taken from afar. I might even build up the nerve to start asking them upfront, since it surely makes anyone's day to be selected out of the crowds…

  69. 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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  71. Internet is written with the capital letter in a sentence, by the way. And hundredths are written not with a point but with a comma. This is according to the standard. And actually everything is very good..!

  72. HEYY! I'll be there September 6-11th! I live in Los Angeles and have never been beyond the Airport in New York. Im totally stoked cause its in celebration of my bestfriends 21st birthday. Cant wait!!! Best wishes,-Natalia P.

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  78. 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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  80. My favorite show on t.v. – I grow to absolutely LOVE those great kids!!! I did not care for the online voting where you have to identify numbers & letters for EACH vote cast. I am 73 and that is way too time consuming!!! Why can’t I vote ‘however many votes’ I have – for whichever contestant- with just one number of my allotted 50 where-ever I want them? I’ve worked up a real sweat with all my voting work!!! And . . . . it’s past my bedtime!!!!!

  81. Bocão da uma investigada de leve nos ultimos dias da administração do Hospital Municipal de Santarém consulta os pacientes q necessitam urgentemente de cirurgia, o q/ ta sendo “solicitado” p/ fazer cirurgia.

  82. Sa zici “Doamne fereste!” sa nu cumva sa ajungi si tu sa fii judecat de un astfel de tribunal! Ca ajungi pentru o amenda neplatita sau mai stiu eu ce contestatie sa mai platesti si pensie alimentara pentru toti aia micii nascuti din “autori necunoscuti”!Trist! Nu-i de ras!

  83. Don’t buy, not worth getting your machine damaged, 12 Feb 2010By  – This review is from: MIELE GN S5261 TT5000 Vacuum Cleaner DUST BAG x 5 Pack I purchased these bags to save a couple of pounds, but what a mistake. The dust got out of the bag and clogged the filters. Don’t buy as you’ll get your machine damaged. Only buy the genuine bags.Help other customers find the most helpful reviews Was this review helpful to you?  | Â

  84. 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.

  85. 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

  86. 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.

  87. 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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