Discussion Forums > Thalassemia Major

Transfusions gone wrong???

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Canadian_Family:
Maha,

I am very disturbed by your post. Don't let anybody bully you or get you to sign any papers. I am not sure if the transfusion in these hospitals are under specialised thalassemia clinic or just regular outpatient department.

Andy Battaglia:
I think this thread strongly demonstrates why patients and parents have to be proactive regarding medical care and treatments. These stories about transfusions gone wrong are numerous. Lisa told me about the time she caught the nurse just as she was about to begin her transfusion with the wrong blood type! Lisa's attention to the transfusion procedure saved her from an error with dangerous implications. I have heard these stories over the years and because humans are human, and nurses are often overworked or even just plain arrogant, it leaves it to the patient or parent to know the procedure from beginning to end and to make sure that every aspect is as it should be. Know the blood type. Know the proper amount of blood and the rate at which it should be administered. Know that your attention may very well save your life or the life of your child. Don't allow yourself to be intimidated by arrogant personnel. Don't accept the sloppy mistakes of those who are supposed to be held to a high standard. I had an experience where in the days after my appendectomy, I was supposed to be taken down to the x-ray lab and was wheeled down by a young woman who brought me to a desk and said "I have the man here for his biopsy." I just about hit the roof. I made so much noise about it, that the woman was reassigned to duties where she would never interact with patients!

Danielle has previously posted about the horrible episode she experienced at http://www.thalassemiapatientsandfriends.com/index.php?topic=106.0
These incidents are far too common and for the most part can be prevented.

I am sure that after reading that, everyone will realize the importance of being in charge and not letting anyone push you around. As Maha said, knowledge is power. Take charge. Don't ever let and medical professional make you feel that they are more important than you! The life of you or your child may depend on you standing up for yourself.

Manal:
Okay what about the labs, i once made a CBC for my son, one showed that he is 5.8 and the other showed that he is 7.2 and the difference between the two tests were 12 hours. The two labs are swearing that they are correct and the machines are fully maintained and are being quality controlled every day .

They can't understand how such readings can have a tremendous effect on the doctors's decesions, whether to transfuse or not and the only solution is to go to a third lab and  have extra more needles for my son :( :(

Manal

maha:
Hi Canadian family
Transfusions in this hospital is not under specialised thal clinic. In Saudi they admit the patient for transfusions. Sometimes you have to wait for six hours before the transfusion actually begins.There are thal centers only in government run hospitals.I did try transfusion once there. The canula goes in with great expertise, Hassan didn`t even have the time to throw a tantrum. Then they took me to a room which looked like a store room. There were already a few moms sitting there. The nurse would come and call turn by turn. I didn`t know what was going on as I can`t understand nor speak Arabic and the women present there didn`t understand english. I was probably sitting there for over three hours and then they called me. Actually no beds were available and they were allocating them on first come first serve basis.The worst part was that they did not have a leukocyte reduction filter and we had asked the doc so many times if they used one before admitting him.When I questioned the nurse she kept pointing to the blood filter.The hospital we are taking Hassan now is a very good private hospital. The paed is very good. It costs more than ten times. The govt hospital charged us SR 130, here the charges are SR 1500. In addition to this we have to replace the blood. but problems do not cease
MAHA

aus:
I can't help feeling how lucky I am letting my son have his transfusion in Australia. Transfusion is an all day thing here. But the children's hospital has enough things to keep the child occupied. The only thing we have to get used to here is that we carry on most discussions with the nurse as we don't get to see the doctors very often. However, if there is any important issue, the nurses consult the doctors immediately anyway. Like what Andy said, parents have to have the knowledge because each time, there may be a different nurse, but the parent is always the same person. I always tell the nurse which vein is the most likely easy vein to get blood, and how fast the child can take the blood.

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