Dore's appt

My apiologies for deleting some of my posts but I have no choice.
I simple wanted to post here that I would not have been so far with my life without you. I found a voluntering job, I started to study more like fulltime and working hard on the getting more friends part. I wont say things are going easier but I am somewhat happier. I slowely see the sense of these supplelemts and starts to take them more regular. So far three days in a row! I will get there where I want to be.

No apologies dear, if deleting them relaxes you then I''m with you on it. Its your life, and every single alphabet of your posts is solely your property and right and you have the right to delete them. I personally believe that (maybe cuz i was just thinking of deleting my previous stupid posts  ) ... Just be happy ... best wishes on thal day

Good luck Dore 

manal

Thank you both. My consult with the doctor has been moved to 1 July. I am open for all suggestions/questions.

So this Thursday I got a meeting with my doctor. That brings me by the question what should I discuss (and what not).
So please if you have any suggestions (how small though) share them with me. How more people think about it, how better the outcome of the meeting will be (or not but the subjects will be for sure!)
Thank you in advance!

Update:

Me:
Mine feritin is again above 1000 is going up and up. I am five weeks of chelation now. My liver counts where more than 5 times doubled. I believe this was what stopped eating me and kept me nauseated. About two weeks I will repeat those tests and hopefully al is back normail. If not, I have no idea what the future holds for me...

Transplant:
One frined of mine has had her SCT in July. Her counts are still prety low and she is not yet making lots of progress. But she is emailing a bit more these pasts weeks. When I spoke to her she was still waiting for her counts to recover and doing labs one or two times ago. She had SAA; severe aplastic anemia.

My other friend is almost through her pre check-ups. She had a hemaferese (sp?) and almost passed out. I was so scared. But on the other hand, she gets one unit blood in 60min and now they talk 500ml blood in only 21 minutes from her! They have added two importants tests to her check-ups. Since I know her she complains about liver and spleen pain. So they will examine that on the same day was I will repeat my bloodwork. If all goes well she is taken in on the second week of September. She has thal intermedia/beta thal major and a family member as donor.

As for my chelation problem. I know I should be patient, calm and relax but sometimes I can not.

Dore

Have you tried splitting the exjade dose to reduce the liver counts??

manal

Yes, I have tried everything. We know I am allergic or my body behaves wrong on Exjade. But what I can do? I still havent restart but that has a reason. I know quitting is NOT a solution although I feel pretty much okay despite those frequent pains.

Best of luck Dore, I hope other drugs will be released in the coming years

manal

Dore ,
best of luck , Dore.....

Best Regards
Take Care
Umair

I have a call appt with my doc tomorrow. I almost forget that. We'll see what is decided. As for my friend; she started yesterday with the heaviest stuff.