Controle bezoek

Vanmiddag het inmiddels vertrouwde ritje gemaakt naar het UMCU voor een vervolggesprek naar aanleiding van de vrij plotselinge daling van de bloedplaatjes tussen april en juni. Het klinkt ongetwijfeld raar, maar ik ga zeker niet met tegenzin naar het ziekenhuis. De mensen kennen me inmiddels goed en zijn altijd heel vriendelijk. Om het half uurtje tussen prikken en het gesprek met de hematoloog door te komen nemen we na het prikken een heerlijke cappuccino als beloning.
Afijn, vandaag was toch anders dan anders. De stabiliteit is weg en ik ga per week achteruit. Best spannend want “niets doen is geen optie”. Ik lig veel op bed of op de bank te rusten, last van mijn maag, eet minder, en afgelopen zaterdagmiddag als klap op de vuurpijl zonder aanleiding ineens 38.6 koorts. Ja, dan schrikt iedereen wel. Vorig jaar met de streptokokken A bacterie begon het nl. ook zo. Wekker gezet in de nacht, maar de koorts liep gelukkig niet verder op en daalde weer op zondag.
Vandaag in het gesprek bleek dit er allemaal bij te horen. Rare verschijnselen die door de hele vreemde bloedwaarden ontstaan. Ik noem in deze verslagen altijd Hb, Leuco’s en trombo’s, maar ook allerlei andere waarden zijn te laag of te hoog. Na ieder bezoek vraag ik een overzicht mee en dat is best interessant om te zien. De afwijkingen ten opzichte van normaal zijn voorzien van een L (laag) en een H (Hoog), en ik heb best veel L en H tjes.
De plaatjes (trombocyten) waren in 3 weken gezakt van 89 naar 78 nu. Dat gaat dus best hard. De normaalwaarden voor gezonde mensen is 150-400! Hb, voor de energie, is gezakt van 6.2 naar 6.1. En heel bijzonder de weerstand (leukocyten) neemt nog steeds toe van 5.6 naar 7.4

We hebben lang stil gestaan bij het vervolg. Ik ben besproken in het team en men wil kijken of ik in aanmerking kom voor deelname aan een “trial” van een medicijnenfirma die nieuwe medicijnen op de markt wil brengen voor Myelofibrose (MF) patiënten. Dat kan niet zomaar, en de firma stelt hier zware eisen aan. De medicijnen worden gratis beschikbaar gesteld (en geloof me, dit zijn hele dure medicijnen want de ontwikkelingskosten zijn hoog en het aantal MF patienten is laag). Het betreft hier medicijnen waarbij heel goede resultaten worden geboekt. 1 trial van een medicijn mag ik niet meer aan mee doen (eis is dat de bloedplaatjes boven de 100 zitten), de andere waar nu dus naar gekeken wordt, eist dat de milt zo groot is dat hij ca 4 cm onder de ribbenboog zit. MF patiënten hebben nl. een vergrote milt (en die drukt nu op mijn maag en daar heb ik goed last van). Bij mij zit de milt net op de grens van 4 cm onder de ribbenboog. Over 3 weken een nieuwe afspraak gepland bij een collega hematoloog, dezelfde waar ik een second opinion bij heb gehad, en dan gaan we kijken of ik hiervoor in aanmerking kom. Ik hoop van wel want de verschillende resultaten zijn spectaculair en hoopgevend. Uiteindelijk zou het best kunnen zijn dat door de ontwikkeling van deze medicijnen een stamceltransplantatie wordt voorkomen.

Mocht ik niet mee mogen doen dan vallen we terug op bestaande oudere medicijnen, en moet ik wachten tot het beschikbaar komt op de markt, en of het vergoed gaat worden door de zorgverzekeraars. Dit laatste is toch een heel apart fenomeen. Zoals ik hierboven beschrijf kan het zover komen dat een dure en risicovolle stamceltransplantatie wordt voorkomen, dus dat er spectaculaire resultaten worden behaald met een medicijn, maar dat het medicijn toch niet wordt vergoed, simpel omdat men beslist dat het te duur is. Vorig jaar is hier al eens discussie over geweest met patiënten met de ziekte van Pompe.
Interessant onderwerp die goedkeuring van medicijnen. Daar ga ik me de komende weken maar eens in verdiepen.
Tenslotte nog een heel ander punt. Er heerst in de biblebelt een mazelenepidemie doordat ouders er voor kiezen om kinderen om religieuze reden niet in te enten. Daar kunnen niet alleen hun eigen kinderen, maar ook anderen met lage weerstand (!) en kinderen die nog niet zijn ingeënt, de dupe van zijn. Eng en onverantwoord! Denk je echt wel aan als je ineens 38.6 koorts krijgt.

Eerst nu 3 weken heel rustig aan doen en dan het vervolg.

371 gedachten over “Controle bezoek

  1. Hihi, die Hälfte ist schon weg ; )Danke Dani, fürs Rezept!Hab keine Mikrowelle aber habe schon ein anderes Rezept ausgesucht!Meine Mama ist auch immer FrsÃEÃt¼¼cksstuten!huch auch ruhige Ostertage!LG Nane

  2. J’aime beaucoup, cette forme de pantalon change et me plaît bien, ça donne du chic à l’ensemble .. Très jolie bague, ça me fait penser aux bijoux en feuille de chêne d’Inès de la fressange (quand cetait vraiment sa marque, il y a longtemps, mais c’est toujours, version cuir, mon porte clef de voiture!) Bisous

  3. Leo your 2nd issue is the answer. Keep your wits about and then you will know what's important. There is no way to present important developments to someone who doesn't think for himself.

  4. Jag skulle tacksamt fÃ¥ tips pÃ¥ grÃ¥färg….hittar ingen neutral och bra till sonen, som vill ha hela rummet grÃ¥tt. SÃ¥ snälla, ge en glimt av gästrummet + färgkod om du vill dela med dig. Tack pÃ¥ förhand. / Malin

  5. apparently kan.. managers and supervisors pun affected lah.. hehe.. HR cock up to the max dok.. then when i asked if this concludes to our appraisal being postponed – no reply..classic way of avoiding rants of an employee.

  6. Unfortunately, my tech skills are of the cut and paste variety, but I love your photo and your son’s wisdom and genius! I’ll pass this on to some of my techy friends who are addicted to Starbucks or B&N! I’m only addicted to Oreos and Linky love! And, BTW, can I have some of your delusions? You definitely qualify as “hot!”

  7. skep-tic [104],Great, prove me wrong. Let me see a bunch of sale prices for the last two months for towns in NW Bergen. I’m not talking about McMansions, I’m talking about a 4 BD dated split on a 75 X 125 property.

  8. I just found your blog today! I make this recipe ALL the time and it's one of my hubby's favorites, but he thought it still needed something to make it more "stick to your ribs", so I add 1 cup of Ditalini pasta to mine. I think I will have to try making the biscuits though for a flavorful change to the usual Italian bread we have.

  9. Euan, thanks for the update. The Nature Network API could enhance NN at a few spots (e.g. better integration with Connotea, or a different representation of what is going on at NN), but nothing that is urgent for me.But the blog post was also about the discussion of these topics. Who decides of what gets build into a Web 2.0 software for scientists, and how can science bloggers get involved? Will software developers also attend the London Science Blogging meeting in August? Do we need a Nature Network Forum for Science 2.0 software?

  10. Anche se il Sig. Varrese non ha risposto alla mia precedente, desiderei marcare quanto detto da Pippo, specificando che a Mola occorrerebbe un Sindaco meno ecocentrico e piu’ portato al dialogo ( almeno con la sua giunta ), che delegasse i compiti ai preposti come una “normale” amministrazione comunale farebbe.Poi non voleremmo alto, ma almeno saremmo un paese come gli altri

  11. caro Luciano , la mia risposta “la sua domanda non interessa a nessuno” era ovviamente ironica e sarcastica. Nel senso che sì , dovrebbe interessare se il cardinale Martini è stato un buon cardinale, cioè dovrebbe interessare ai cattolici, in teoria, anzi dovrebbe essere l’unica cosa che interessa, ma nella pratica …

  12. It took a month, but I have finally received my copy! Geez, I could have gotten it in two days if I had ordered from Amazon Prime. I haven’t watched it yet, but I may this week, since Seattle is expected to have a massive snowfall tomorrow. 

  13. Greetings from Wordwise Hymns. Thanks for some excellent comments on John Cennick’s much revised hymn. The Lichfield Cathedral Choir’s rendition seems to be popular on a number of blogs. However, to me, the tune used (Helmsley) conveys a restful, almost pastoral mood, which is at odds with the dramatic action of the second coming as described by Matthew (Matt. 24:29-31). My personal preference is Regent Square, a sturdy tune that better reflects the text.

  14. obviously like your website but you need to check the spelling on quite a few of your posts. Many of them are rife with spelling problems and I find it very bothersome to tell the truth nevertheless I will definitely come back again.

  15. This a great video! I just left Jaxson after 8 years and caught some of the most beautiful fish in the world. The cuttie’s are an amazing species. As far as specific hoppers, mid summer, any sort of big foam typically does well. As far as the river in the video, I agree with Flyfisher85. Looks like upper GV, crystal creek. Buffalo fork blows the GV out of the water though.. no pun intended

  16. This is a very cumbersome design to work with. As a representative from Area 51, specifically the Reverse Engineering group,I state for the record, WE DID NOT HAVE ANYTHING TO DO WITH THIS.I have to shut off autoplay, so that I may comment on a video.If the next video starts I lose what I was typing.Learn HTML. Or, remove that string of code.FAIL

  17. Hi, Nephele-It was great meeting you in person, and it is also nice to be able to follow up with a question that (of course) occurred to me after the conference was over! I’m curious to know if, among your published clients, you see a common characteristic that you feel is critical to their success? Are they obsessive about their writing? Voracious readers? Are they very strict about producing a certain number of pages per day? I’m just wondering if there are certain habits that, based on your interactions with them, you would recommend that other writers emulate?Thanks so much!Miriam

  18. Tucker is one of those eleetes that done inherited all their skillz and talentz from der parents. Including a trust fund. And a never-ending stream of careers.Luke Russert. Steve Forbes. Chris Wallace. Peter Doocy. Ben Quayle. Hate to tell you wingnuts, but aristocracy is a failed experiment…unless you cull mercilessly. Mold

  19. Aw, thanks. I made a lot of progress on it this fall, but I think at this point, one of the problems is that (I think) I have a very distinct but casual storytelling voice (as seen above?) that… doesn’t work in a Victorian setting. So I’m having to recalibrate it a little, so that it sounds like me and not stiff or formal, but is still appropriate for the time and setting. And having not quite settled on that yet makes it hard to write new scenes and rewrite old ones.

  20. Det är lite kluvna känslor. Nol och Ale har varit bra för mig. Jag har träffat många fina människor. Nu, när jag blivit pensionär, behöver jag Berlin för mitt fortsatta fotograferande. En storstad med enorma fotograferingsmöjligheter. För att inte tala om upplevelser.Och självklart ska du och jag ta en och annan tur genom stan!

  21. Priscila Infanger comentou em 13 de dezembro de 2010 às 13:39. Sou suuuper a favor do tênis, e os exemplos da matéria ficaram ótimos! Sou baixinha (1,58m) e sou adepta às sapatilhas, rasteiras e saltos baixos. Acho que elegância nada tem a ver com o tamanho do salto e sim um conjunto de toda a roupa e até mesmo de suas atitudes. =)

  22. Without some kind of time limit, I cannot agree with this feature. I think that users should not have the ability to remove comments once that comment has been replied to.This "feature" gives users the ability to be unaccountable for anything they say. I know that I for one will quote and re-post any comments that I receive, identifying the original poster.

  23. e o atmosfera deosebita la circ, un fel de incordare, adrenalina, spectacol, culori, animale. de cand a crescut fiica-mea si am fost dezamagita de starea animalelor, am evitat sa merg. e o surpriza placuta ce ai vazut tu!

  24. oh le americane, ma anche tante italiane si truccano troppo (e fanno troppe lampade e prendono troppo sole), forse la mentalità americana sta arrivando anche in Italia? inizio a vedere anche tante facce rifatte, anche in giro per strada…Visto che vado quasi mai in profumeria, non conoscevo i prodotti Caudalìe, ma ultimamente sono alla ricerca di più prodotti naturali possibile, quindi proverò sicuramente a cercarli. Merci!

  25. Scusate ma avrei una domanda, su wikipedia è riportato:"Armstrong prese il controllo manuale del modulo lunare, che fece allunare alle 20:17:40 UTC."Ma non fu Aldrin a pilotare il modulo, visto che sulla stessa voce è riportato chiaramente che il pilota del LM era lui?

  26. Non, la photo a été prise le 2 ou le 3 mai, donc, à moins d’une dégradation soudaine en l’espace d’une semaine, votre regard négatif semble colorer quelque peu en noir la réalité. Nullité ? Bêtise ? Oui, bien sûr, comme Buren, comme Pei, comme toute oeuvre d’art contemporain dans un cadre historique, aussitôt décriée.

  27. Berti Stravonsky6. november 2009Argh Johan, det er lidt letkøbt…Og forkert.Du sÃ¥ ‘masser af steder? Jeg har min daglige gang i København og jeg sÃ¥ det stort set aldrig.Du skriver et par stykker? Hvor mange er sÃ¥ det?Og sÃ¥ skriver du, at disse et par stykker brokker sig over, at Tempo ikke fÃ¥r særbehandling. Særbehandling er da vist lidt af en tilskrivelse…

  28. OMG, I miss Oakland Chinatown. I used to work in the little garment district there. Will never forget smelling fire in our building one day, & discovering a lady burning a bucket full of magazines & newspapers INSIDE the building. We were mystified when she showed us a plate of meat, that we could only guess she meant to cook in the noxious fire. HA! There's an amazing Vietnamese restaurant down there, can't remember the street. I think about that Pho all the time. Not much in the way of Pho in Marin.www.nickiefrye.etsy.com

  29. Actually what is required is a forum where people who wants to give back to the society is linked to the honest low income citizen of india, who is sucked by the money lender.Dhanax is one of the p2p site but unfortunately our citizen who are lower middle class person does not have access tothe internet and to exploit the advantage.

  30. I¡¦ll right away snatch your rss feed as I can’t in finding your e-mail subscription hyperlink or newsletter service. Do you’ve any? Please permit me recognise so that I may just subscribe. Thanks.

  31. Well done, Shelle and Wendy! Lots of people don’t know that 11/11 was the day that the arimstice ending the fighting of WWI. Great summary of events, Shelle! In fact, the 11th of November was called “Armistice Day” until Eisenhower was president. Of course, The Great War had not turned out to be “war to end all wars.” After so many servicemen and women had fought in both WWII and the Korean conflict, the name “Armistice Day” was officially changed to “Veterans Day.”

  32. Mike, good thoughts. It seems to me that you and Bart have brought up some similar issues. Perhaps in your estimation it would be better to focus on trimming state and national convention budgets in ways which will allot more funds for education and missions. My feeling is that you and I share the conviction that education is often instrumental in missions (fulfilling calling, etc.)… especially considering our current educational endeavors! I trust that our educated task force will keep this in mind!

  33. O respeito cada vez menos acompanha o cidadão, no caso, a motorista. Lamentável ver certos comentários que generalizam os curitibanos. Meus pêsames pelo fato de odiar os moradores daqui. Gente errada e sem educação existe em qualquer lugar. Um parabéns para quem fez o vídeo.

  34. Naturopaths are immune from malpractice in the same way that your cat is. They are not medical professionals and their services are not covered by health insurance, thus malpractice is not relevant to their trade. This does not support your position.

  35. Yay! Thank you for posting the recipe. I can’t wait to try it. I did the short order cook thing for a little while, then I just got tired of it. Thankfully my son is still young, under 3, and this was about a year ago that we were doing it. We got tired of making a dinner for us and a sandwich for him. I finally decided that he was either going to eat what I made for his meal or he wasn’t going to eat until the next meal. He is good about eating most of his meals now.

  36. etre il faudrait se rappeler ce que Sarko dit à ce français, resté inconnu, « Pauvre c…, va! » Et le rappeler a F.Hollande..?? Pauvre,,, va étudier l’économie et ce que la France pensait officiellement du dollar, etc. pendant les « 30 glorieuses »See u, Carl

  37. caro MSP,receando estar a repetir e tornar cansativos os elogios que lhe têm sido feitos nesta caixa, gostaria de lhe dizer que foi realmente um prazer e um estímulolê-lo aqui, embora, na minha opinião, talvez se sentisse melhor na pele de comentador (ou agente infiltrado) do que na de autor ( o que só o engrandece, acho eu). Pena que questões pessoais se insinuem sempre e acabem finalmente por sabotar este tipo de coisas.Com amizade e um agradecimento sincero.

  38. hehe!! HERLIG!! kan kanskje være litt vanskelig Ã¥ være Todd og Silver akkurat nÃ¥ da! 😉 dyr er herlige vesener ja…. selv har vi prøvd det meste, katt, undulater, lam (hadde to en hel sommer), kaniner, fisk, hund, og hamster(e), sÃ¥ vi er kanskje glad i dyr vi ogsÃ¥!? 🙂

  39. Well, ezines can bring in some additional traffic. At least that is what I constantly read from other marketers aboutt ezine. But just by looking at my main niche blog which has 2 ezine submitted articles, I only received 1 visitor from ezines it in a period of 30 days.Now when I look at one of my xfactor sites that is using traffic kahuna, I can see I received 17 visitors from one of the sites in which my back link is located. So, I just see ezine as not being as valuable for me.

  40. Jack, nice looking temporary beds, also adding some organic matter to the soil after you are done using them. Hopefully next year you will be taking your own plant starts out of your new greenhouse. Let me know when you are ready for it. Happy planting. SteveCurrent score: 1

  41. I recently came across your website and have been scaning along. I thought I could leave my first comment. I don’t know what to say except that I have enjoyed scaning what you all have to say

  42. saya rasa tujuan penyerahan spt itu adalah analisa potensi pajak pendapatan yang belum dilaporkan.misal dari usaha kita selain kantor yaitu usaha restoran .jadi isilah jumlah harta kita tahun 2009 dan 2010. senormal mungkin.penambahan harta harus wajar sesuai pendapatan kita di kantor.kalo penambahan harta kita satu tahUn lebih banyak dari penghasilan kita.bisa bisa kita kena PAJAK LAGI LO.JADI CERMAT LAH. SANKSI TIDAK MENYERAHKAN SPT 100.000.SALAM KENAL BROS N SIST

  43. It is a worry. There’s so much nastiness and people like Morris, and Abbott, are just feeding it and making it worse. If they can call female public figures cows, and bitches and say they should be kicked to death – just for doing their jobs – and no one pulls them up for it, it tells other misogynists that this is fine.Susani, welcome to the News with Nipples.

  44. Aunque al final casi nos llueve, pasamos un día estupendo. Ayer tarde hicimos un recorrido similar. Nos encontramos casualmente con otro paseante y le conté todo lo que aprendí con vosotros. ¡Creía que yo era un experto en la materia!Cosas de la vida…Gracias por ser el revitalizador de la memoria y de la historia de unos tiempos casi olvidados. “Si se calla el cantor, muere la vida”, dicen.¡Hasta la próxima!

  45. JMJ -> Mince, la mozzarella de bufflonne serait donc encore plus une rareté que ce n’était déjà le cas, nécessitant du lait de jeune bufflesse, quel raffinement… A moins que les emballages commerciaux des mozzarella aient juste mal traduit la buffala italienne.

  46. E’ comunque da apprezzare l’intervento del Dott. Buttarelli che con molta serietà e professionalità segue problematiche di interesse del cittadino. Non so quanti altri dirigenti di altri uffici pubblici farebbero lo stesso. E’ un modo molto produttivo di diminuire le distanze istituzioni-cittadino del quale dobbiamo dare atto alla Polizia Municipale. Non siete d’accordo?

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