Vitamine D, controle hematoloog

Vitamine D, de oplossing?
Al vaker heb ik geschreven dat dit blog door heel veel mensen wordt gelezen. Iets waar ik eerlijk gezegd best trots op ben. Ben dit blog begonnen om familie en belangstellenden op de hoogte te houden van alle onderzoeken en uitslagen in de diagnose fase. Nooit verwacht dat daar een beschrijving van een leven met levensbedreigende bloedkanker myelofibrose, streptokokken A (vleesetende) bacterie, acute leukemie en een stamceltransplantatie achteraan zou komen.
Afijn, het voordeel van veel lezers is dat er ook lotgenoten tussen zitten en ja hoor. Ik heb van een heel deskundige vrouw een mail gekregen (waarvoor dank!). Zij heeft zelf ook een beenmergziekte, maar had daarbij ook vitamine D tekort. De dosis die ik van de huisarts heb gekregen (800 i.e.) gebruikt zij als onderhoudsdosis. Zij gaf me de tip om om een “boost” te vragen. De huisarts was het hier mee eens en vorige week dinsdag heb ik 1ml colecalciferol ingenomen. Gelijk aan 50.000 i.e vitamine D. Dus in 1 keer  de hoeveelheid van 62 pillen!
Als het goed is, moet dit na een week gaan werken. Tot nu toe nog geen resultaat en nog steeds zware vermoeidheid en ik ontkom er niet meer aan om in de middag 2-2,5 uur te gaan slapen.

Extra controle hematoloog.

Zo wil en ga ik niet verder. Gisteren een mailtje gestuurd naar de hematoloog. Vandaag om 11:15 gelijk een afspraak. Ik heb bloed laten prikken met het formulier dat ik al had gekregen voor de 1 jarige controle na de stamceltransplantatie. En dan prikken ze veel. Heel veel! 
Totaal 15 buizen zijn afgenomen (op de foto 13, er zijn 2 buizen op ijs gezet). 

Ruim een half uur later zitten we bij de hematoloog. Nog niet alle bloedwaarden zijn binnen, maar wat er binnen is ziet er best uit. Hb. 9.5, Ht 0.42, Trombo’s 144, Leuko’s 5.3. Deze waarden gaan richting de waarden voor gezonde mensen. Leverwaarden zijn nog wel te hoog, maar zakken dankzij de medicijnen. Nierwaarde is te hoog. De Neoral in combinatie met te weinig drinken kan de oorzaak hiervan zijn. Ik zeg de arts toe om meer te gaan drinken. Dankzij het nieuwe patiëntenportaal van het UMCU kan ik thuis de uitslagen inzien, ook de uitslagen die nu nog niet bekend zijn. Ben benieuwd naar mijn ferritine (ijzer in mijn bloed). Die is sterk verhoogd door de vele bloedtransfusies (ik schat 70-80). Te veel ijzer van jezelf verdwijnt weer. IJzer dat via bloedtransfusies je lichaam binnenkomt gaat er niet vanzelf meer uit. Het hoopt zich op termijn op in bijvoorbeeld de lever. Dit wordt ijzerstapeling genoemd. Lever problemen, maar ook diabetes kunnen het gevolg zijn. De maximum waarde voor gezonde mensen is 250. Thuis zie ik dat mijn waarde 4216 is! Dat wordt dus een onderwerp om volgende week te bespreken. 
De hematoloog denkt dat de vermoeidheid komt door de immuunsuppressie (prednison en Neoral) en niet door vitamine D tekort. Omdat de afstoting niet erger wordt, besluiten we deze te gaan afbouwen. Prednison 10mg per dag wordt 10 per 2 dagen. 1 dag 10mg, de andere dag 0. Op de dag met 0 moet mijn lichaam dan het bijnierschorshormoon zelf aanmaken. De Neoral gaat van 2×1.5 naar 2×1.25ml per dag.

Volgende week de grote controle 1 jaar na de stamceltransplantatie! Gesprek met de verpleegkundig specialist, met de transplantatieverpleegkundige, Hartfunctie (ECG), HRCT longonderzoek, Dexascan (bot dichtheid). Tijdens de gesprekken hebben wij in ieder geval op ons lijstje staan: vermoeidheid, ferritine omlaag, inentingen, botdichtheid ivm hoog prednison gebruik en te laag vitamine D.

Tot de volgende keer allemaal!

3.765 gedachten over “Vitamine D, controle hematoloog

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  73. I would love to think maybe I contributed to your happiness by letting you appreciate me for a week but I’m sure it’s actually due to the relief you felt when I left. :PEither way, I’m just glad you’re happy. You do live in beautiful place for it and fall is the best season ever. I <3 you no matter your mood, but reading this post makes me smile so much.

  74. Thanks Sis. They are telling me a story. And, somehow, it’s my story! Like a waking dream, I watch. I just watch. Amazed at what comes next. I re-read this post (did I write this?!?!) & I’m taken again at what they offer me. I feel blessed to even watch it from the sidelines. -Mar

  75. that was a good way to go (we were boarding a cruise) and that there were often people at the dock who had a room for let in their home. I could have spent a week or more at each island we visited, but I’m not bugged by islands like some people are.Safe travels to you… and may you discover great wines wherever you go. ME, TOO on Donati, btw! Cheers!

  76. You put Archer in the group of guys you think won’t be anything awesome? Odds are stacked against all prospects – generally speaking – but Archer was a good a minor league pitcher as there was in 2010, and he’s young for his level. He’s the Cubs top pitching prospect by a good margin.

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  78. Social media management What i don’t realize is actually how you are not really much more well-liked than you may be right now. You are so intelligent. You realize thus significantly relating to this subject, produced me personally consider it from a lot of varied angles. Its like men and women aren’t fascinated unless it’s one thing to do with Lady gaga! Your own stuffs outstanding. Always maintain it up! Social media manager

  79. The new Zune browser is astonishingly Great, yet not as beneficial as the iPod’s. It is effective nicely, but isn’t really as fast as Safari, and has a clunkier interface. If oneself at times application upon working with the website browser which is not an issue, nonetheless if you are planning in direction of study the world-wide-web alot from your PMP then the iPod’s bigger display screen and much better browser could possibly be sizeable.

  80. The Zune concentrates on remaining a Transportable Media Player. Not a internet browser. Not a video game machine. Potentially within the long run it will do even better inside of those areas, nonetheless for by now it can be a extraordinary path in the direction of prepare and listen in the direction of your songs and motion pictures, and is with out peer within that regard. The iPod’s positive aspects are its world wide web checking out and programs. If people solid much more compelling, probably it is your suitable alternative.

  81. When I originally commented I clicked the -Notify me when new comments are added- checkbox and now each time a comment is added I get four emails with the same comment. Is there any way you can remove me from that service? Thanks!

  82. Zune and iPod: Maximum persons examine the Zune toward the Touch, yet just after watching how skinny and surprisingly little and light it is, I check out it in direction of be a as an alternative exceptional hybrid that brings together features of both equally the Touch and the Nano. It can be very vibrant and gorgeous OLED exhibit is somewhat lesser than the touch screen, nonetheless the player alone feels Very a little bit smaller sized and lighter. It weighs concerning 2/3 as a lot, and is substantially smaller in just width and height, When remaining only a hair thicker.

  83. Zune and iPod: Maximum us residents look at the Zune in the direction of the Contact, but after viewing how skinny and shockingly tiny and light it is, I get it towards be a quite one of a kind hybrid that brings together traits of the two the Touch and the Nano. It can be exceptionally vibrant and lovely OLED exhibit is a little bit smaller than the touch screen, but the participant itself feels pretty a bit scaled-down and lighter. It weighs above 2/3 as a lot, and is significantly smaller within just width and peak, though being merely a hair thicker.

  84. Zune and iPod: Utmost These review the Zune towards the Contact, however the moment observing how skinny and shockingly very low and mild it is, I take into account it in direction of be a fairly distinctive hybrid that combines features of equally the Contact and the Nano. It’s very colorful and gorgeous OLED display is a bit smaller than the contact screen, but the participant itself feels Very a little bit smaller sized and lighter. It weighs more than 2/3 as a lot, and is substantially more compact in width and height, although remaining basically a hair thicker.

  85. In between me and my spouse we have owned excess MP3 gamers more than the a long time than I can rely, including Sansas, iRivers, iPods (classic & touch), the Ibiza Rhapsody, and so on. But, the closing several many years I’ve fixed down in direction of a single line of gamers. Why? Due to the fact I was satisfied towards investigate how well-designed and entertaining to retain the services of the underappreciated (and widely mocked) Zunes are.

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