Discussion Forums > Thalassemia Major
hi new here and need some advice
Emby:
hi,
Andy, Umair and Zaini thank you for your reply which i found very helpful. i will talk to the consultant about it. i hope you are well yourselves. i feel you have a great thing going on here and am glad to have found you.If i have any more concerns i will contact you again.
emby
Emby:
Canadian_family; Thank you for your information
Emby
cherieann:
Hi Emby, Welcome to the family. :hugfriend
I agree with my fellow thalassaemics in regards to the hb count not going below 9.5
I live in New New Zealand but was given the opportunity to go to Australia and meet fellow thalassaemics and a professor Bowden. While there we talked about how often I should be transfused. I was told that is each Thalassaemic should be judged on each individual case as we are all different but that the hb should not drop below 100 which I think is 10 or 9.5. Frequency should be based individually as our body's requirements are different. I was also told that if we go too long between transfusions and our body needs the blood, our marrow tends to over work trying to make the blood we need. This in turn can lead to abnormal bone expansion.
I'm not saying this would happen but it can be another talking point with your haem to express your concerns and questions. We all deserve better quality of life and sometimes this may require either transfusing week early or having that extra bag sometimes we need to make that choice. At the end of the day the doctors can go home and forget about thalassaemia, where we still have to deal with it.
Emby:
hi cherieann,
thank you for replying. i absolutely agree with you. i believe that living with thalaseamia you develop gut feeling about things.....i mean some health professionals want to start different treatment perhaps to put their 'stamp' on it and seem to class thelaseamia in the same place as common aneamia. i think it is absolutely important that the main consultant for whatever sickness is a specialist on that condition so that by them being well informed we could put 100% confidence in the treatment they give.
recently i feel just that, that they just ''go home''. we as parents have had to do alot of ''homework'' and i feel lately we have had to dispute alot of the way my children have been receiving some of their medical treatment.
anyway i put my trust in God that all will work out for my two kids and all of you...
cherieann:
Hi Emby.
I don't know what country you are in and I don't want to make things difficult for you but if you feel you need to get a specialist involved why haven't you? As a mother you have a right to question and to make informed choices. If you feel you are being informed, why dont you ask the doctor to request an appointment with another haematologist.
They don't normally like that but as a parent you need to have a relationship with your children's doctor so that you can both work together for your children's sake.
I am different in the fact that my relationship with my specialist is an understanding that I can participate in the clinical mangement of Thalassaemia not as a parent but as a patient.
Sometimes doctors do not always listen or hear the fears that you may have and although you are speaking, their ears aren't turned on. You are in a hard place at the moment but I feel that if you could say how you feel and what you would like and maybe together you and the specialist could come to a mutual agreement. I don''t know how your children are feeling but I know that when my transfusion nurse didn't like my mum coming with me to transfusions, I got very upset and resented my nurse alot. Health professions need to understand that although they work with the disease, family and friends still need to be there for the wellbeing of the patient.
I wish you luck and your children a long life of love, health and happiness.
Navigation
[0] Message Index
[#] Next page
[*] Previous page
Go to full version