Welkom

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WELKOM.


Welkom? Jazeker, een welkom aan vele Nederlandse MPN patiënten die de weg naar mijn blog hebben gevonden. Waarom nu vraag jij je af? Nou, de Nederlandse MPN stichting heeft meer dan 1000 leden die allen (of familie) een zeldzame beenmergziekte hebben. In het blad dat 3 maal per jaar uitkomt, staat een interview met Marjolein en mij en vandaag is het bij het grootste gedeelte van de 1000 leden op de mat gevallen. 
Tuurlijk zijn wij trots op wat we met elkaar bereikt hebben en brengen we dit verhaal graag naar buiten. Zeker als het als voorbeeld kan dienen voor anderen. 

Voor iedere patiënt die dit blog leest, wil ik benadrukken dat ik, zoals in de kop van het artikel in het blad van de MPN stichting staat, niet de standaard Myelofibrose patiënt ben. Door domme pech heb ik vrijwel elke grote complicatie gekregen die bij deze ziekte mogelijk is. Vleesetende bacterie, Acute leukemie, Stamceltransplantatie met daarna hartstilstand, beademing dmv tracheostoma en in totaal 4 maanden ziekenhuis.

Controle.

Vorige week donderdagmorgen ben ik weer voor controle naar het ziekenhuis geweest. Omdat zowel Marjolein als de kinderen moesten werken ga ik dit keer met Gert, inderdaad de vriend die de Alpe d’Huzes een aantal maal is opgefietst om geld op te halen voor kankeronderzoek.  De afspraak met de hematoloog in het ziekenhuis is om 8:45 dat betekent om 8 uur boedprikken. Kwart over 7 vertrekken we samen naar het ziekenhuis. Voor mij best raar, want in de 4 jaar dat ik ziek ben is dit pas de 3e maal dat Marjolein niet mee gaat. Omdat dit voor Gert een unieke mogelijkheid is om eens achter de schermen te kijken bij een ziekenhuis bezoek van mij, spreken we af dat hij op het priklab, bij de hematoloog en bij het aderlaten gewoon mee naar binnen gaat. 
Hij is onder de indruk van de openheid en de vriendelijkheid van de hematoloog. Ik kan het iedere keer schrijven, maar het is gewoon zo. Heel deskundig, maar ook recht voor zijn raap. En van die stijl hou ik wel. Mijn Hb. is 8.8 waardoor er groen licht is om straks weer een halve liter bloed te laten aftappen (om het ijzer van voorgaande transfusies kwijt te raken). Plaatjes zijn nog iets te laag (128), leukocyten zijn nu normaal (4.2). 

Ferritine.
Meest opvallende afwijkende uitslagen zijn mijn leverwaarden en ferritine. De ferritine moet dalen, maar is gestegen van 3500 naar 4437. Dat is heel raar en ik vraag mijn arts om uitleg. Meetfout? Nee, de grote hoeveelheid ferritine is opgeslagen in mijn organen waaronder mijn lever. Nu het ferritine nivo in mijn bloed door de aderlatingen omlaag gaat, laat mijn lever deels ferritine los wat in het bloed terecht komt en de hoge waarde verklaart. 

Lever en nierwaarden.
Mijn leverwaarden gaan achteruit. Kan door de Graft komen, maar mogelijk ook door de ferritine of de medicijnen. Gelukkig zijn mijn nierwaarden gedaald tot normaal.

Medicijnen.


Al 6 weken zonder prednison en de afstoting neemt nog steeds niet toe! Blij dat ik daar vanaf ben, vooral omdat ik al behoorlijk last heb van osteopenie, voorstadium van osteoperose.
Ik had 4 weken geleden de dosis Neoral (cyclosporine) verlaagd van 2x1ml naar 2×0,75ml, maar na 2 weken werd de afstoting in mijn mond erger en hebben we besloten om voorlopig terug te gaan naar de oude dosis. 
Gedurende krap 2 maanden slikte ik foliumzuur omdat die waarde te laag was. Hiermee mag ik stoppen. Ook deze waarde is nu binnen de normaalwaarden.

Hierboven een foto met alle pillen die ik wekelijks klaarzet. Het zijn er nog 10 per dag en daarnaast nog 2x1ml Neoral drank. Stuk minder dan de 24 waar ik mee begon!

Fysiotherapie.
Omdat we dachten dat de vermoeidheid (Marjolein noemt het uitputting) zou kunnen komen door conditie en kracht tekort hebben we in overleg met de hematoloog besloten dat ik onder begeleiding van een fysiotherapeut ga sporten. Al een keer of 12 ben ik in het ziekenhuis in Woerden 2x per week een uur aan het sporten met ex-kankerpatiënten. Conclusie van de fysiotherapeut is dat mijn conditie redelijk is en zeker niet slecht. Dit kan zeker niet de oorzaak zijn van de vermoeidheid. We besluiten om 1x per week naar de training te gaan omdat mijn conditie en kracht door alle oefeningen wel toenemen.











Blijf lezen

Jul 25, 2015Prednison, kaakchirurg,Aug 31, 2015Samenvatting/interview

3.050 gedachten over “Welkom”

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  2. … ben voyons…Mis à part en maths, pour faire de la recherche en science il faut avoir accès à un labo, donc un financement.Après il y a des gens qui font de la recherche naturaliste de terrain pour le plaisir, reste que comme pour les maths faut quand même connaitre son sujet ! Et les amateurs publient en général dans des revues d’amateurs (fort intéressantes d’ailleurs pour qui s’y intéresse).

  3. Betty, you may find (as I am) that she is not that far away. Tanissa and I talk almost every day and in some strange way, we share possibly more than we do when she is home. But there is no denying it, this is a new chapter. Other gifts, for sure. But another chapter. I wish you much peace and many great new gifts along the way.

  4. I thoroughly enjoyed the closing rally, although I had to leave early. It was good to see old prolife friends, but I noticed a lot of people I didn’t know this time around. What a good sign this is that more and more churches and individuals are becoming involved in this most important work. As we take time to rest and refresh before the next campaign, let us make it a point to tell others about this wonderful witness in our city. If we don’t, who will?

  5. I'm with Tauriel. I regard Dumbledore as one of Rowling's best characters (the other is Snape). Dumbledore became ten times more interesting with the reveals in DH about his dubious past and his Machiavellian, downright Slytherin, tendencies. But Gandalf has my heart. OK, he's an archetype, like all or most of Tolkien's characters, he is the 'Odin' figure in LotR, but as ever these archetypes come gloriously alive in Tolkien's skilful prose and Gandalf is also very human. I remain wary of Dumbledore, after DH, but I would trust Gandalf's judgement in anything.

  6. Good information! I also was interested to read more about gout. My father suffers from it occasionally, mostly after too much shell fish. He has a very hard time walking and has some pills to take that help. I didn’t know it was in the arthritis family.

  8. I recently heard a sermon that talked about our human instinct to invest our lives… it referred to a quote by John C. Maxwell: “I want to make a difference with people who make a difference doing something that makes a difference at a time that makes a difference.” Something for u to chew on…

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  11. To Tim Hudak:NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO NOPlease Tim, do Ontario a favour … crawl back under your rock — and stay there! We don’t need your kind of lizardry around here.

  12. Excellent read, I just passed this onto a friend who was doing a little research on that. And he actually bought me lunch because I found it for him smile Therefore let me rephrase that: Thank you for lunch! “Not only is the universe stranger than we imagine, it is stranger than we can imagine.” by Sir Arthur Eddington.

  16. just discovered your blog and i love itt, you are so freaking adorable =)oh, and i just graduated from Cal myself -c/o 09, and i totally know how you're feeling… most of the time i was really ready to get out, but i miss it so much already! live it up, have a great last year =)

  17. ` You know, both my boyfriend and I have been told by ‘doctors’ that Ritalin is horrible and that we are guaranteed to be addicted to it.` We aren’t, of course. And like gnat, we are also calmed down by caffeine (AND Ritalin).

  25. Es muy parecida a la que tienen los representantes de comercio que van a comisión pura y dura, después de un día de trabajo en el que no han cerrado ventas. Esa también la conozco bastante bien.

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  30. Fortsetzung…..Diese wiederrum denken dann der film ist schlecht(weil wenn der kritiker das sagt dann stimmt es natürlich auch) und guggen in deswegen nicht an weil …naja er ist ja schlecht,und wir wissen beide das es sehr viele menschen gibt die viel wert auf die meinung eines kritikers legen…und sich daran halten,weil einige menschen noch nicht auf eigene film beine stehen

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  33. De acuerdo con la opinión, de que un árbitro es bueno en cualquier categoría, regular o malo, como también puede ser honesto o deshonesto, y es ahí donde está el problema (en la honestidad. Puede ser bueno para todos, regular para todos, o malo para todos, pita lo que ve, pensando que lo está haciendo bien, y eso es ser honesto. Lo malo es cuando lo hace premeditadamente, es de pena, y no se debe de permitir, por el bien de todo el fútbol.El jugador que no vale lo retiran o lo eliminan, el árbitro que no sirve , hasta luego Lucas.

  34. Michel / Nossa achei uma falta de respeito esses casais sentados juntos abraçados, poxa vida , na casa de Deus é um lugar que devemos ficar totalmente sem contato de carne, mesmo tendo todo o respeito possível !! bom, essa é minha opinião !

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  37. – My favorite part about this? You stayed true to your own unique style in your photography while completing the assignment. I love these and I love the diptych of the detail verses whole (or half, rather). Beautiful. Most certainly art!

  39. Hi, heard you on the radio Helen! You were great and it sure makes me appreciate your blog more, given the huge amounts of time you put into it. Keep up the good work.

  41. Konan dit :OP j’ai pas encore vraiment suivi pour juger donc je ne peux m’exprimer sur lui amis je sais qu’il d’innombrables adorateurs. Fairy Tail et Bleach j’ai pas accroché hélas, Death Note parfait dans son genre. FMA me parle, une sémiologie émane de ce conflit humain / homonculus, je comprend que tout le monde ne peux aimer ce genre d’histoire, chacun ses goûts et ses préférences, il fait cependant l’unanimité chez pas mal de fans de manga.Aime : 0

  42. saludos muy buen foro, tengo una duda mi subcuenta de vivienda que toma el infonavit junto con el prestamo, se hace el total para comprar la casa, mi duda es, la subcuenta de vivienda tambien es un prestamo o se toma para bajar mi deuda con esta. ejemplo: me prestan 220 mil mas subcuenta de vivienda 75 mil alcanzo para una casa de 295 mil, LOS 75 MIL LOS PAGO

  43. More news has come out in the last two days about substantive agreements. They’re not where they need to be to curb climate change, but maybe they’re a start. I’m encouraged by initiatives like the one you cite. We’ll need every industry on board to turn this ship in a different direction.

  44. I sometime wonder do they one to be so fake…..I dare them to go nude look with their boyfriends for one day to test weather he truly loves you for who you really are….and FYI I don’t brag am pretty am acceptable…an happy with it, with or without make-up this is how I look, Don’t believe add me on Facebook to see my Pic do state who you are thks.

  45. I have a black cat too – he’s sitting on my lap as I type and looking disappointed at me for not using both hands to pet him.I can’t say he actually drooled, but I distinctly remember him covering my hands with kitty saliva as I petted him once.Kudos on the new name, it’s lovely. Just because I’m curious – why didn’t you name her Rowena?

  47. : étrange. Moi, ça fait 25 ans que je me fais vacciner contre la grippe. Le lendemain, j’ai parfois une petite raideur dans l’épaule gauche. Rien d’autre. Et plus la moindre grippe depuis 25 ans !

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  50. Rachel Corrie joined the ISM for college credits. She was to receive them when she returned. Giving up your humanity for college credits make her a whore in any book. It is prostituting herself for a degree.The ISM sends pretty white women from Europe and the US to Gaza not just to protest, but to "service" the jihadis. And that makes them Prostitutes in any court of law. Or in the vernacular: Whores.The title on Corrie stands. She whored herself and her principles.

  51. -AT on oikeassa, Biotherm kuuluu L’oréal-konserniin. Enpä minäkään periaatteellisista syistä ostaisi Biothermia, mutta toisaalta luontaiskosmetiikkasertifikaatin saaminen edellyttää eläinkokeettomuutta… Eli mitä tästäkin sitten pitäisi ajatella…Minulla toimii erinomaisesti kristallikivideodorantti, runsaalla kädellä käytettynä!

  58. Jürgen Grimmeissen18. Mai 2011Hallo,nach dem Update auf OS 4.3.3 eines iPhone4 geht die Koppelung mit Lotus Traveler nicht mehr. Auch nach Löschen und Neuanlage des Kontos nicht. Die Meldung “Exchange Account-Informationen konnten nicht überprüft werden” erscheint. Ist Ihnen ein Problem in dieser Richtung bekannt?Viele GrüßJürgen Grimmeissen

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  62. Thanks a lot hougan for you article about Effective Vocabulary Strategy – Students Develop Crossword Puzzles. Now i do the proposal thesis. thanks a lot. nice too meet you.

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  64. I think that I agree with the but I'm not completely sure. Frankly, I just hope that these next four years are good ones, or at least better than the last four. I don't feel that it's entirely anybody's fault. But I do feel that we can make a difference these so that we have more confidence in our future. Hopefully we have learned what we need to for the past few years.

  68. Kat rumah ni, kotak suiz dapur selalu ‘melompat’ tiap kali petir…rasanya org yg pasang dulu ada silap ke?atau tak cukup power?lepas tu, bila masuukan tangan dlm mesin basuh yg on , yg ada air…boleh rasa arus elektrik dlm tu…walau pun sikitada org kata, wire earth tak cukup… Kujie recently posted..

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  73. Hey Chanson,The firm “No” worked really well with my daughter but not with my son. I am curious if your friends with the fragile Christmas tree had a son if their experience would be the same? Maybe. On baby proofing, with our daughter we were able to keep all our CD’s and nice books on lower shelves; with Charlie keeping anything where he could reach it was inviting disaster, regardless of stern no’s, time outs and even a swat on the bum. Sigh….

  74. Bonne idée, une bonne performance, l’analyse peut-être un peu plus – Pour aider à approfondir. Plus, essais présentations, comme aujourd’hui, Je crois que les commentaires de certains experts donnerait un plus grand intérêt dans la présentation. Fell.

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  80. If you’re still on the fence: grab your favorite earphones, head down to a Best Buy and ask to plug them into a Zune then an iPod and see which one sounds better to you, and which interface makes you smile more. Then you’ll know which is right for you.

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  83. Dude, 150 people who are tied into social reputation systems now know that the “Yahoo Pattern Detective” is a self-promoting jerk who’s willing to waste 2 minutes of their time. What were you thinking? The guy after you had a great question, but we never got to hear the answer.We oughta go to your core conversation today and have a very, very different conversation.

  84. Obama vient de dire : « Tu es Petraeus et sur cette pierre… » Pour suivre avec les jeux de mots polyglottes, n’oublions pas que son prédécesseur a été limogé après une interview dans « Rolling Stone ».

  85. Ja z małą uwagą do korekty: w języku polskim zwrot "potrzebować zrekompilować" nie istnieje. Słowo "potrzebować" jest w tym tekście żywcem przetłumaczone z angielskiego. Błąd.

  87. Faut leur suggérer, même si elle est loin d'être parfaite c'est une bonne série, surtout sur les premiers tomes ^^(et l'harmonie est une quête désespérée, le must c'est l'Assassin royal, le temps qu'ils publient la série complète chez J'ai lu ils avaient refait 2 fois la maquette sans même parler des illustrations xD)

  89. Pourquoi s’ennuyer à télécharger de la musique quand des sites comme Deezer vous permettent d’avoir tout à disposition pour une somme modique (5 roros par mois pour du streaming pur, 10 roros pour pouvoir enregistrer sur un baladeur) ?

  90. michael william disse:Música é um presente dado por Deus, é uma coisa divina, uma coisa que nunca viveremos sem. Ela pode mudar o nosso humor completamente em dia que estamos irados ou coisa assim.. A MUSICA pra mim é uma dádiva.. Feliz é aquele que faz música

  91. I have a property management business and have needed to restrict property managers from anything financial, which we have done with no complication. However, I would like them to have access to the “notes” sections. Is it possible to only allow access to update notes and nothing else?

  94. in the Fun StuffWe are still friends, but I shove the friendship out to a much lower level. Trust is important in friendship, and walking away from his mortgage doesn’t make me trust him, especially with money matters.If his car breaks down and he needs me to come and rescue him, I’ll come… But I won’t be lending him any money, that’s for sure

  100. you start closest to the plug in and work your way back forth to the fasehtrt point away from the house. Hard to draw a diagram on here, but I will try. The ======== line represents the side of the house, the X is where the cord plugs in, and the >>>>>> arrows are the directions you mow in.================ side of house X . cord plugged in here>>>>>>>>>>>>>>>> mow horizontally to right>

  103. I was told by an old pal in the intelligence services that whren the King of Jordan visited the royals at sandringham, one of the security men shouted "here come hear this " it was from Jimmy Savile asking if he could come along as he needed a favour, it is known that Sir Anthony Blunt knew Savile and the queen was close to Blunt.peter wilson

  104. AGFriend’s foe What i really want to say is that even if we win Champion’s league this yearAvram Grant should be sacked , we need a new manager with a footballing Brain, we should win game’s by playing in field not by LUCK,we should KILL Opponent before they start attacking us.

  105. Ostatnio miałem pecha… Padł mi stary laptop więc kupiłem nowiutkiego ThinkaPada Edge 14 żeby nareszcie podłączyć kompa do TV po HDMI. Na Mavericku działało "prosto z pudełka" … Po instalacji Narwala … Oops! Czarny ekran na lapku, czarny ekran na tv … po odłączeniu HDMI od lapka pojawiał się kursor na czarnym tle lub nic 🙁 Wygrzebałem w sieci buga, a na razie jadę na "Malinowej Mandarynce".

  106. Hej søde Amalie, jeg elsker din blog, og din afslappede stil!Du er en rigtig god blogger, og jeg er glad for, at du er begyndt at blogge af lyst.Ps. vi har det samme dynebetræk.. hæhæ. ♥

  110. It’s the “free” aspect of it when they guy getting the free cell tower is also on the committee that regulates the phone industry.If I wanted a tower at my vacation home where cell service sucks, you can bet they would charge me for it.

  115. I have to say, the pork belly there, the perfect cubes of mouthwatering tender meat and crunchy crisp crackling looks absolutely superb! What a professional looking dish! You'd make many a chef jealous!What a labour intensive process! Well Done for your efforts!

  116. Frieren mag ich ja gar nicht. Bei uns ist die Heizung auch schon angeschaltet. Aber noch musste sie nicht heizen. Die Fühlertechnik sagt noch, dass es gemütlich warm im Haus ist. Naja, ich hab die dicken Socken auf jeden Fall griffbereit. :)LG

  119. disse:Mari,Não foi escrito.Foi o que ele disse para os jurados na reunião de quarta.Basicamente, que para o anuário deste ano, ele decidiu julgar foto, direção de arte, redação, etc como acontece em outras premiações e como já aconteceu no anuário, anos atrás.E tudo isso para valorizar o ofício. Ou os diversos ofícios.

  120. All of you are funny You discuss in very serious tones only those things which are Jewish related. Not one of you would write the same things about Turkish/ Moslem practices because of the threat of violence. Only Jewish customs concern you because you know we're mainly non violent and try to persuade rather than kill. I'm unaware of any neo Nazi or supremacist gang going after Turks in Germany. Why is that ? Is it because you're just a bunch of bullies deep down and are afraid of meeting an equal?

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  127. You’ve made me wonder, too. Linear hashing looks particularly interesting. It also occurred to me that, since the hash function is one-to-one in this implementation, we don’t need to store the original key in the table — just the hash. This ought to speed up any method of resizing. I don’t really plan to experiment further, though.

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  138. Om Fahlander kan bli polisanmäld för att ha talat om sanningen pÃ¥ twitter om RÃ¥dbjer sÃ¥ kan säkert Rybb se fram emot en anmälan om förtal, dragskott stÃ¥r säkert till förfogande om nÃ¥gon vill ha ut herr rybb´s IP nummer…

  139. Precis, lite vattnigt i mitten. Sen är det subjektivt hur stort problem man egentligen tycker att det är. Aromerna och behagfullheten är det ju verkligen inget fel pÃ¥…Jadis 05 tyckte vi var värt 92 starka pinnar men dÃ¥ handlar det mer om kraft mer än om elegans. FrÃ¥gan är om inte kraftfulla viner alltid har ett litet försteg när det utdelas poäng. Själva imponatorfaktorn…

  140. Szia Klaum,az ilyen csodákra mindig megéri várni!hát nem semmi dolgokat vágtak egymás fejéhez, remélem meg tudják oldani és megbeszélik Clau-val. Elhiszem, hogy Clau-nak nem könnyű megszokni Rob hivatását, de hát nem érzi, hogy mennyit jelent Robnak? Rob szereti, őszintén és odaadóan szereti Claut.Nagyon drukkolok nekik, hogy mielőbb üljenek le beszélgetni!Imádtam, mindig imádom a Rob szemszögeket!Kíváncsian várom a folytatást!Puszi,ZoÉ

  141. mau tanya kak, untuk kewirausahaan sosial yang berorientasi mungkin lebih pada sumber daya manusia dan lingkungan, tp klo terkait produk apa itu bisa termasuk kewirausahaan sosial?? atau kah, sebenarnya bukan masalah pada adanya produk atau tidak, tp merajuk ke tujuan usahanya pada dunia sosial??trim’s ya kak,, ^_^

  148. ehehe, bem, se aqui no Brasil algumas emissoras deixam as corridas de lado para mostrar missa do papa ou jogo do curintia com qualquer time de cegos mancos que aparecer, por que os australianos – que nunca foram muito certos da cabeça – não podem trocar por uma partida de… De… Disto ai.

  151. It's drive by trolling. Paul fanatics have a lot of comments to leave what with all the negative stories on Paul and only so much time to dedicate to it.Sadly unlike the 50 cent party in China they aren't even even getting paid for the privilege. Or maybe they are as they didn't really show up yesterday so maybe they have time off.

  153. For real. But there’s a difference between the organized homeless people, who gather things they might use, and them crackheads who just take anything. They wear the most random clothes, too. I don’t know how so many of them manage to find bad 80′s stone washed jeans, or turquoise lycra shorts, and Members Only jackets.

  156. I find Bolivia quite fascinating on multiple levels–from their hard work to move to nearly 100% literacy for the entire population to not bowing to US pressure and actually banishing an ambassador apparently engaged in efforts to oust Morales.

  159. I tried taking a look at your website on my iphone and the format doesnt seem to be correct. Might want to check it out on WAP as well as it seems most cellular phone layouts are not working with your site.

  160. dit :Je crois que tout est dis.Mais c’est vrai que Skype deviens de plus en plus incontournable.On trouve vraiement le wifi de plus en plus facilement, du coup avec la tablette, le smartphone ou le portable c’est bigo…

  164. "In other words, the American intelligence apparatus is quite large, and lots of people have lots of connections of varying degrees with it."This certainly jibes with a recent Drudge headline informing readers that over a million people in the US have top security clearance. And if so, that means your odds of knowing someone who knows government secrets are nearly as high as knowing somebody with a PhD.

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