Dore's appt

Thank you for your advice Andy.
I followed Zaini's instructions today. Let's hope it works. The taste is pretty good actually. I was suprised about that, haha! Hopefully I will have a good night of sleep in a few hours. Exjade(750mg) brought some insomnia to me.

Yup the taste is pretty good  hope it will work for you.

My fellow pkd friends are in very bad condition.

Little miss J had her galbladder out last tuesday afternoon. They said she would come home yesterday, but must now stay for an other week. She has very high blood counts in pancreas and liver. So I am very worried about her.
I've had those problems during my operation too, but I tought today they could give better care on this.

Little mister J had a blood transfusion last week. When he came home, he became very sick and his parents brought him to the ER. Blood tests were done, but all looks fine. Only his hgb was a little above 10. Last tuesday he was rushed again to the ER. Blood tests were done and all looked fine. Only hb dropped to 9.5 And he was sent again to home.
His doctor don't want to give him a blood transfusion, because he had one last week(I don't agree with this). Upcoming week they will repeat the tests and hopefully they will give him a transfusion.
The 3 year old toddler "told" his parents that his belly hurts. He wake up several times at night. They did an echo for that, but nothing was found. It's hard to communicate with little mister J, but it's sure his belly hurts - they only dont know where/what/how.

Both family can use good thoughts and prayers. I am very afraid for both of them. Little miss J's family doesnt live close to the hospital. Her mother stays continue with her and there is no one close to support her. Plus they are still waiting for the bmt results. They all hope her big sister is the right match.
As for little mister J's case, I can not believe that doesnt know what's going on or dont give him a little extra blood.
Btw his parent's saved his younger brother's cord blood. They are the perfect match, but doc doesnt want to do a transplant now. ( I have explain his parents the risks). I think doc's decision is based on his Exjade experience. I guess she wants his ferritine first come down so that liver/kidney enzymes stays in safe zones.

If you have any thoughts, ideas or I dont know what, please tell me about it.

Thank you in advance, Dore
p.s. my exjade counts were a bit high, but not too high.
p.s. II it's my grandfather's Birthday. He is turing 89 today!

Little Miss J has an infected pancreas. According to her mother its a difficult infection to get fixed. She asked for prayers.

Dore,

My prayers and wishes for both your friends,its really hard to see such young kids in pain,i hope they will recover soon.

Say happy birthday to your grand father from me  .

Zaini.

Dore,

I am also sending my prayers to both familes, I hope for the best outcome for them.

Happy birthday to your grand father Dore!! 

Sharmin

Thank you both. When I get a new update I post it here. Unfortunately means no news not good news.
Remember the mother who posted about (possible) bonemarrow failure. I knew her very well, but her message her was the last I get. I miss more Pkd friends. :'(
good night, sweet dreams

Im in a hungry, so I only want to put something about about Little Miss J. Last night, ten days post operation, Little Miss J was finally able to eat something! Though they won't expect to see her leaving the hospital before next week. However, the first recovery is here! 

Glad to here that

Zaini.

Dore,
i know i m late to wish u and Miss.J good luckk ...but , wat can i say ..... okiey.. Good LUCK anywayz  , hope that everything is going to be normal/fine and hope that everything will b fine n normal soon ..

Best REgards
Take Care
Umair

Please, read my drumroll topic. You won't regret it ;)

Dore,
i just red that , and have replied there  ... Well Done, Dore ...

Best Regards
Take Care
Umair

(Almost) Good Evening,
yesterday I was part of a research. Different than I thought, but Im for research. Bloodwork was done too. I was called and told that my hgb was 6mmol/l (9gl/dl) only FOUR days AFTER my last transfusion. I was pretty upset. However it is what it is. I only add a few extra checks and set a limit. If OK I got my next blood transfusion over 2.5weeks.

And I want to be a little more brave with folic acid.

Dore

I'm stopping by to say hi and to tell you all that I won't visit for a while. My father had a very horrible car accident. It's a miracle he has "only" arm fractures. He underwent an operation.  He is home now, but getting more and more Ill now it start to heal. I wrote only like that because people believe he's fine but he's not.
At Friday I woke up with a sore throat. I went to college waiting 3 hours for my last lectures and crashed completely down when I arrived home. Lying, sleeping and watching silly tv. If I try to stand my head is hurting so much!! I got it warm now but only since 2hrs. The whole time I thought I had fever, but I had a very low body temperture 34.6 -35.8 or slighty fever 37.2C. I won't have a bt before Friday. I'm back so soon as something really changed. Take care!!

Dore,

I am so sorry to hear about your father's accident, i wish him a speedy recovery.It must have been a terrible expierence but thanks God he is fine.

I hope you can see a doctor to explain this low temperature and definetly it will be associated with a low blood pressure too. Please take care and update us as soon as you can 

manal