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Dore's appt
Dori:
I have no idea where else I should post it so here it is. At this very moment I restart Exjade. It's in the solving process at the moment. First dose will be 375mg. I think for longer for a week since bt is next wed or earlier because I will feel poor anyway. Good thing: for first time in a loooooong while my hgb is 5.8 mmol/l (x1.6 = yours) so I have postponed it to next week. Part of my decision was based on forecast of extremely good weather. I spend enough of those days....
Why I take it during nights? I took it at the very first morning of my bike trip and all day I was sleeping or taking the bike and luggage in and out trains. (due bad weather we decidded to travel to Dresden immediate and start with biking there.
Hopefully I have soon the energy to visit the forum.
Best wishes, Dore
nice friend:
:goodluck wishing u a fine Tx day and super smooth Tx :thumbs ....
Best Regards
Take Care
Umair
Dori:
Hello,
At monday I had still a hgb of 5.4. I was so glad it didn't went down too fast. This last blood transfusion went very difficult. I had so much pain that I cried in that room. Everyone wanted to comfort me and they let me take 2 paracetamol. It took a long time before it started to work.
I still don't feel 100%. I realize that this is my new way of life, but I can not accept it yet. Yesterday I went out, but thankfally there was a wall. I suddenly was very dizzy. It might be caused by Exjade. Fact is that I feel most of the time dizzy. (that's what I meant with new way of life)
I'm at 750mg of Exjade now. It's not even 20mg/kg - if I calculated well - but I am a bit scared to take more. I still take it in the evening, but it messed up the whole night.
Zaini. I can't find the right place but I talked about possible liver/kidney problems, right?
They only let me do a normal blood test at monday. Nothing else, I don't know why. At the time I found out it was already too late to go back. I still believe my organs had a hard time. I had pain around those organs and dark urine. I don't know what caused the last though. I noticed that I was a little bit too yellow at the beginning of the week. Now I know my hgb I can not believe that caused it.
I also received my tests of last week. It's good I didn't see the ones from the last time earlier. The paper with results is upstairs, so I might want to edit this later. So far I as remember where my liver and kidney functions in the very high normal ranges. (I took no Exjade). My ferritine went in 2 weeks up from 1050 to 1358. I guess it is around 1500 since I didn't take Exjade and nor the diet.
Zaini:
Dore,
Are you monitoring your SGPT and Serum Creatinine regularly? its a mucst,plus keep yourself well hydrated,Lil Z's hemo asked me to give her as much water as possible,she said elevation in SGPT can also be caused by dehydration.
Zaini.
Dori:
I know Zaini, I know. I fight for it, everytime I get in contact with any medical thing, but sometimes I am so tired of this fight. At Monday I saw it too late. In two weeks it's time for a new fight.
I'm glad Little Z's hemo can also be a little mine. It's true I'm not good in the hydration job.
Thank you.
Dore
ps I forget to mention that I had a blood pressure of 80 over 38. Everyone was getting it on her nerves, but I felt ok at that moment. Bp is alwys low, but now I let of a lot of alarms LOL.
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