transfusion question

We are STILL waiting to receive approval to get our daughter who we are adopting who is Thal Maj.  She is 15 mos. and has been receiving transfusions since she was 6 mos.  She is currently in an orphanage and is receiving transfusions every 3-5 weeks depending on levels.  She is at the blood center for 2 days - 1 for matching and the other for the transfusion.  I'm assuming this is how it will work when she comes home?  Do most of you go for 2 days or are you able to do it all in 1 day?  Do most people just watch levels and wait until they drop low enough before getting a transfusion or do you just know how often you will need one and schedule them ahead of time?  At the orphanage, they are waiting until she shows signs that she needs a transfusion, usually running a fever and vomiting.  Is this typical to wait until they children are sick?  I know we will figure out the details when she is finally with us but it makes me a little uncomfortable to wait until she is really sick before providing care.  In my head it seems like you would try to provide treatment before it got that bad.  Thank you for your information!  If it matters, we will be working with Dr. Thompson at Children's Hospital in Chicago. 

Diana 

Hi! Welcome Diana. We(me and my sister) always took 1 day and one night.I guess it depends on how long the blood is being processed and how many will be transfused to the patient. 
Hmm but that was before, we do not have bt now.And we do have a regular hemoglobin test  so we would be on guard always.

Hello Diana,

Your daughter is lucky to have mother like you  ,For blood transfusion,you don't have to stay for 2 days at hospital,when ever you plan a transfusion,a day ahead they take blood sample for cross match,and then second day you can go to hospital for transfusion,Which is a few hours process.
Once you start transfusing,your doctor or you yourself can detect a pattern for after how many weeks your daughter will need transfusion,like some thals go after every four weks,some go after every three weeks,the goal is to maintain her hb between 9 and 10,not letting it go below 9,that way her growth will not be affected.
You really don't have to wait until she is sick,as i said before,a pattern will be set eventually.

I hope i answered all your questions .

Zaini.

Hi Diana
We do the cross matching and transfusion on the same day. We are in hospital for the whole day and discharged an hour after transfusion. This way works well for us and also saves him an extra prick as blood is drawn from the canula for cross matching. We go in every four weeks.

Lyanne
Since you were being transfused from age 3 , how did you become transfusion independent now? Also what is your hb without tx. Just curious

take care
maha

Maha,

I remember Lyanne once mentioned that she got transfusion free after she went through splenectomy.

Zaini.

  Hi Maha.No problem. Actually no one can't really explain even our then pediatrician, since me and my sis was diagnosed/worked up as a beta thal patient. Anyway, It really started when we had our splenectomy, our bt become less frequent, from every month to every two months to every 3 months until we notice our hemoglobin become stable and don't need transfusion anymore. Oh except when I fall ill then I will really need a transfusion. My hemoglobin right now is in 9 - 9.5,  

Hi,

I must give the blood for the matching 72 hours before the day I will have the blood transfusion (there must be a better sentence for this, I need some help). It usually takes so long before they send the blood from Amsterdam to Leiden to do there the genetesting and then they must transport it back to the hospital. I have heard this information last week. I thought everything was done in Amsterdam, but I was wrong.

Genetesting is the key to keep the health up to date, but I can't really play with the dates anymore. The blood does not survive the weekend so I must play everything safe.

In the past (0-?yr) we waited also untill I developed fever e.g. . Nowadays I would not let it come so far. I must say that I missed lots of primary school because of this. The first year I had to redo, because I was every week for a few days in the hospital (not in the same place/state as school).

Yes. I do know people who are transfusion free since they had their spleen out. It did not work for me

Dore
not thal, but pyruvate kinase deficiency