Ups en downs

Vandaag weer een controle gehad bij de hematoloog. De Graft (afstotingsverschijnsel) aan mijn huid is jammer genoeg niet minder geworden, maar gelukkig geen last van mijn darmen. Wel is mijn huid door de Graft donkerder gekleurd en is nu ook mijn mond (slijmvlies) gedeeltelijk aangetast. 

Ik heb “een gezonde kleur” gekregen door de afstotingsverschijnselen. Net alsof ik 2 weken naar een zonnige bestemming ben geweest. Heb er ook veel opmerkingen over gekregen. Zoals de hematoloog zei “beter dat ze zeggen wat zie je er goed uit, dan dat ze zeggen wat zie jij er beroerd uit”. Waarschijnlijk blijft deze verkleuring zo. Ontstekingsreactie en pigmentvorming. De uitslag zit er nog steeds en gaat ondanks de medicijnen (prednison en Neoral/cyclosporine) nog niet weg. Nu is daar uitslag in mijn mond bij gekomen. Ik hoop echt dat dit niet erger wordt. 

De prednison zijn we aan het afbouwen. Absoluut noodzakelijk in verband met de bijwerkingen, maar goh wat is dat jammer. Nu pas realiseer ik me dat ik 2,5 week lang veel meer energie heb gehad. Absoluut door de prednison. Een week 70 mg per dag, toen een week 40 mg en nu afbouwen met 5 mg per 3 dagen. Ik zit nu op 20 mg en dat verschil voel ik heel goed. Langzaam aan neemt de energie af. Ik slaap weer meer overdag, beweeg moeilijker (lopen/opstaan/traplopen) en voel me minder fit. Het is niet anders. Ik zal er aan moeten wennen dat dit toch wel de toekomst zal zijn. Maar, ik ben er nog en we genieten van iedere dag. 

In dit blog ook nog heel goed nieuws, hoor! Mijn bloedwaarden stijgen door! Het beenmerg is echt aangeslagen en er worden veel bloedcellen geproduceerd. Dat gaat echt goed. De hematoloog is daarover heel tevreden. 
Hb vandaag      8,4, (rode cellen normaal 8,5-11,5)
Trombocyten    128 (plaatjes normaal 150-450)
Leukocyten       5,4 (witte cellen normaal 4-10)

De hematoloog zei het bij het verlaten van de spreekkamer nog “we zijn er nog niet”. Ook al stijgen mijn bloedwaarden nu snel en is dat natuurlijk het nieuws dat je wilt horen, we maken ons met elkaar wel zorgen over de vermoeidheid en de Graft, zeker nu ook mijn mond problemen gaat geven en de uitslag op mijn huid niet verdwijnt.

3.059 gedachten over “Ups en downs

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  49. Pois é Dr Osmar, o negócio é torcer contra mesmo, pois depender só das forças do meu Vascão não dá mais. Agora, pô Dr. Osmar, respeito muito suas opiniões, mas dizer que vai torcer contra o Santos só pq o Goleiro do Santos disse que vai torcer pro Vasco? O mínimo de imparcialidade seria ótimo 🙂 Grande abraço e parabéns pelas sensatas opiniões, exceto essa citada, hehe…

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