Discussion Forums > Thalassemia Major

Ports

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germ79:
I know this has been discussed before but it appears the msn link that many refer to when I search for past posts is no longer in existence so I hope you won't mind repeating yourselves.

Last week my husband and I brought home our daughter that we adopted from India.  She is almost 2 and she has beta thal major.  She is just an amazing child, so strong and has already brought so much joy to our lives.  We are working with 2 hematologists - Dr. Thompson from Chicago and a local pediatric hematologist who will follow the recommendations of Dr. Thompson because Chicago is a bit of a distance from our home.  We met with the local hematologist early this week and he would like us to consider a port for her transfusions.  I'm going to discuss this with Dr. Thompson at an upcoming appointment but I'm just trying to get some input.  My daughter is terrified of doctors - she screamed when the doctor only wanted to feel her belly to feel her spleen. I can only imagine how she will do when they transfuse her.  The doctor said they usually put them in the chest - my husband is concerned about scarring.  Those with young children, do they have a port or can they tolerate the other way?  I appreciate any input. 

Also, I have a list of questions to take to see Dr. Thompson - is there anything anyone can recommend that I make sure to discuss?  I really want to discuss chelation and nutrition... anything else you can suggest?  I've been reading this forum for over a year and it has been the source of so much information.  I cannot thank you all enough for your willingness to share your stories. 

Narendra:
There is a topic we discussed earlier related to ports in Infants

http://www.thalassemiapatientsandfriends.com/index.php?topic=455.0

germ79:
Thank you!

Andy Battaglia:
I would be very hesitant to have a port put in your child, and I did convince my wife to not get one for her chemo treatments 5 years ago, even though her hematologist was very much in favor of installing one. I really feel it is done more for the convenience of the hospitals than it is for the needs of the patient, but I do have to say that this is strictly my opinion on the matter.

Lena:
A port for transfusion?

I have been transfused since I was 8 months old and I am now 48 but never with a port. I find it apalling. Sorry for being harsh on this- Andy is more flexible I see - but I find it too much. Your daughter will get used to transfusions and chelation as we all did.

Lena.

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