Second opinion -> Wat een besluit

Donderdag voor een second opinion bij een collega van mijn eigen hematoloog geweest. Hij ziet veel Myelofibrose patienten en gaf aan zich gespecialiseerd te hebben in deze ziekte. Dat bleek wel, hij wist er ook veel vanaf. Vooraf zoals gebruikelijk weer bloed geprikt.
Nog steeds dezelfde waarden als 2 weken geleden. Hb 6.8, Witte bloedlichaampjes 2.2 en plaatjes 130. Omdat de bloedwaarden sinds de operatie van afgelopen februari vrij constant zijn, en mijn Hb zelfs licht is gestegen, is zijn advies snel en duidelijk :

“uitstellen die stamceltransplantatie (SCT)”

Zonder twijfel noemt hij hierbij de volgende argumenten :
1. Bij een SCT loop je 30% risico op overlijden.
2. Grote kans op restverschijnselen als energie- en concentratieverlies na een SCT.
3. Er worden momenteel medicijnen ontwikkeld tegen Myelofibrose die naar verwachting de komende jaren op de markt gaan komen en waarmee een SCT dus overbodig zou worden.

Tja, dan ziet de toekomst er ineens anders uit. Daar waar wij er met iedereen om ons heen rekening mee hielden dat einde dit jaar de SCT zou plaatsvinden, gevolgd door minstens een jaar revalidatie, ontstaat er nu een situatie waarbij ik onder controle zal blijven en we aan zullen moeten kijken hoe deze ziekte zich verder ontwikkelt. De energie komt er niet mee terug en ik zal dus heel erg rustig aan moeten blijven doen. Iets dat ik de afgelopen tijd wel heb geleerd. Maar toch, het is een chronische ziekte die niet vanzelf over gaat.

Die nieuwe situatie roept gelijk vragen op. Hoe vatbaar ben ik voor infecties of bacteriën? We willen de situatie van februari met de Streptokokken A niet nogmaals meemaken!
En mijn werk. Nu kan ik niet werken, maar we hadden voor ogen dat ik na de SCT en de revalidatie wel weer (gedeeltelijk) zou kunnen werken. En de donor. Er is nu een donor voor mij gevonden en beschikbaar gehouden. Is die er straks ook nog als ik wel een SCT moet ondergaan of kunnen ze dan niemand meer krijgen en komt het einde in zicht?

Het voelt zo raar om een keuze te hebben en die te moeten maken. Toch ben ik wel blij dat ik voorlopig geen SCT hoef te ondergaan. 30% is best veel, en dan ook nog maar afwachten hoe je er uit komt. Als het moet dan moet het, maar nu dus gelukkig nog even niet.

De vragen komen gelijk in het gesprek aan bod. Hoe groot is het infectie-gevaar met deze bloedwaarden? Weer wordt er benadrukt dat ik in februari “ontzettende pech” heb gehad en dat de kans op herhaling klein is. We moeten goed op blijven letten. Veel handen wassen en niet in de buurt komen van mensen die ziek zijn of grieperig. Voor de zekerheid krijg ik een noodvoorraad antibiotica mee. (Heb 2 weken geleden ook een kuur gehad door een plotselinge ontsteking aan mijn been).
Over werken was hij ook heel duidelijk. Dat zal echt niet lukken. Juist het feit dat Myelofibrose patiënten in dit stadium de ene dag een beetje energie hebben, en de dag(en) erop helemaal niet, maakt het onmogelijk om te werken. Dit klopt ook wel met mijn gevoel. Ben gewoon echt te moe, kan me al helemaal niet concentreren en vergeet domweg allerlei dingen.
De beschikbaarheid van een donor is geen enkel probleem. De optie op deze donor wordt nu vrijgegeven omdat ik deze niet op korte termijn nodig heb, maar de kans is erg groot dat er voor mij (snel) een donor wordt gevonden als dat noodzakelijk is.

De conclusie was door bovengenoemde argumenten met elkaar snel getrokken. Uitstellen!

Toen we de spreekkamer uitliepen kwamen we op de gang de verpleegkundige tegen die ons zo goed geholpen heeft bij alles wat met de voorbereidingen van de SCT (en de infectie van 12 februari) te maken had (Thks!).Tijdens dit gesprek riep zij een hematoloog erbij die toevallig langs kwam en waarvan ze wist dat hij dienst had gehad op de Spoedeisende Hulp, toen ik met de bacterie binnen kwam op 12 februari. Hij vond het herstel echt wonderbaarlijk, kende het hele verhaal tot in detail uit zijn hoofd en dacht nog meerdere keren per week aan mij, mijn opname en aan de operaties terug. Licht geëmotioneerd (en naar ik hoop ook trots) door het feit dat ik er zo goed vanaf ben gekomen vertrok hij naar zijn spreekuur.

Wie beweert dat artsen niet betrokken zijn bij hun patiënten en de behandeling, maar alleen op geld uit zijn, zit er in het UMCU goed naast!

3.528 gedachten over “Second opinion -> Wat een besluit

  1. Ongelofelijk wat de medeische wetenschap toch allemaal al kan en weet te bereiken. Waar ik voor een jaar terug of zo, nog nooit van deze ziekte gehoord had, weet ik er door jullie ineens "veel" van. Wat een lastig besluit moet dat toc ook zijn. Wat ik me nog af vraag is hoe e.e.a. Er voor komt te staan als die accute leukemie neens m de hoek komt. Want dat risico is er toch ook nog steeds? Wel prettig als een specialist gelijk zo vastberaden is. Dat zijn ze ook niet zo maar!
    Mooi als artsen zich bijzonder mensen weten te herinneren! Het geeft inderdaad maar eens aan dat artsen zeker mensen zijn (daar hoor je nog wel eens twijel over bij anderen) maar vaak verwachten we te veel, te snel of onmogelijke dingen…. Fijn Dolf dat er in ieder geval even duidelijkheid is. En misshien ook even duidelijkheid. Neem het per dag en luister onverminderd goed naar je lijf en gevoel! xoxox

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  35. I loved your post – as always. Your heart cries sound so much like mine. I have been dealing with so much pain and I do wonder why. I have a lot of people praying for me and I also know that God is in control. I have to just wait, rest, and trust in Him. Thank you for sharing your deepest thoughts and feelings . . .you make it so safe for the rest of us to do it, too!! Much love – Julie

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  37. comentou em 7 de janeiro de 2011 às 22:46. Um pergunta fora dos assuntos maravilhosos que voc ‘aborda’: qual é a câmera que voc usa para tirar as fotos? a imagem fica muito boa!

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  43. Dawno mnie u Ciebie ( w sensie komentowania) nie bylo…wyjasnie jak sie spotkamy hahaPiekne zdjecia, superinteresujacy post- juz wiem dlaczego nie pije coli i prawie nie jadam rabarbaru ;))ale na Twoja tatke pewnie bym sie skusil :)A propos Edwarda- to skomplikowane…

  44. Max Gallo… une élection de « maréchal » ? Là, le bâton est tendu aux lecteurs !Beau dommage que ce nouvel immortel ne soit pas né plus tôt. L’Académie aurait pu lui offrir le siège du Maréchal-nous-voilà, un fauteuil pur style Etat français. Et réservé à Pétain jusqu’à sa mort et donc bien après sa condamnation infâmante.

  45. Gracias Francesc por el comentario. Pudimos hacer el documental gracias a vuestra colaboración y al espíritu que se respiraba en las cuevas de Venta Micena, pese a las adversidades constantes, injustas y absurdas. Sin vuestra ayuda y sin esa energía tan extraordinaria de Josep Gibert y de toda su familia nunca hubiésemos conseguido el tempo, la sinceridad y la belleza visual que Germán buscaba en su película. Gracias a vosotros de todo corazón!!!

  46. How right you are, Nance! It’s not the size of the rock but the depth of the commitment to make THAT thing go…and keep on… It’s probably obvious I am a planner out of the chute — I budgeted everything, we stayed under or on them all over our decades, including living WAY below our means as a habit. And…I heart bling! Happy V-day, Ms. Thang. xoxo

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  55. humanist,Israel was quite happy to have Iran strong, proficient in technology, etc etc, provided the government of Iran was not hostile toward Israel. Yes, Israel wants the US to coerce Iran into being more friendly toward Israel. And Israel sees “regime change” as the only way for this objective to be accomplished. And Israel lobby (and Israel) virtually control US foreign policy in the ME. Not completely, though they would like to.

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  63. Max, Thanks for the clarification. Of all the different potential scenarios I have thought about as possible sequels, direct GM effects on people as a consequence of crop ingestion (either intentional or accidental) had not factored into the equation. It is an interesting possibility though and I will have to give it a bit more thought!

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  68. Gorgeous dress and amazing fit on you. Love the little nipped waistYou're looking glorious as ever!Great clutch and agreed on the topshop make up. I've became no.1 fan of their lippy's, fantastic staying powerxxx

  69. Erika! Hidd el bonyolultabb leírni, mint megcsinálni a formázást. Olyan szépen adja magát a rózsa, hogy el sem lehet rontani.Feltettem a fázisfotókat is.Eszter! Igazán isteni a friss sárgabarackkal lesz, márha lesz az idén barack.Nem tudom mit okozott a fagy a barackosokban!

  70. tatiana valencia reyes12-10-2011 para k todos sepan, papa roach siempre sera una de las mejores bandas de este mundo,,,no importa lo k digan los ignorantes k no saben ni lo k estan escribiendo…pues si no les gusta, mantengan las palabras en la boca y vallan a joder los gustos a otra parte…….pero papa roach es unica aunke no lo digan ustedes, y gracias a los k defendieron y dijieron la verdad, ellos si saben lo k escriben,,,,,,,,en todo caso metanse sus comentarios x donde ya saben y critiken a su abuela…….RRRRRRRR,,,,,,,,tomennn

  71. Elaine….wow! When I saw this I just was overcome with emtion- this really captures the way it felt to be in the moment… I am truly touched beyond words I HAVE to have a copy of this to go with the Krishna. Can’t wait to share this with everyone. Thanks so much to mys isters for making this a truly magical celebration…. Hugs everlasting- Jules

  72. disse:Boa Tarde amigo, desculpe a demora, mas eu estava fazendo um curso fora da minha cidade, por isso demorei pra responder. Mas enfim, esse é o jeito mais fácil: Clicar com o botão direito no exemplo, e salvar.Eu fiz uma função pra você poder baixar o arquivo, clicando coom o botão direito nele. Não tem erro. Abraços.

  73. … et les « exclusivement réservé » ou « strictement interdit ».D’autre part, le contexte libyen semble avoir fortement évolué en quelques années…Tiens, à propos, seraient-ce les réticences tripolitaines à acquérir nos valeureux Rafale qui auraient incité notre bien-aimé Directeur du marketing d’assaut à organiser une démonstration en direct/live des capacités fulgurantes et sidérantes de cet appareil que le monde nous envie ?

  74. I remember how they slaughtered those students at Kent State University. Although, I wasn't there I remember it. That happened under GOP rule. Why does the GOP party hate schools of higher learning? Kathy:Out this way, we have something like an anti-bully programs and classes that teach diversity if I remember correctly I read something about it back a few years ago.

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