New to the group

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Offline EvilGeniusAJ229

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New to the group
« on: May 22, 2011, 08:55:00 PM »
Hi.  My name is Adrian, more commonly known as AJ.  I am 15 years old living with thalassemia and currently receiving blood transfusions every 2 weeks.  I have just one concern at the moment.  I will be traveling with my dad's band in the fall and was wondering if anyone had any suggestions as to how I keep with my transfusion schedule.  Do we make arrangements at a hospital/clinic in or near the city we are in at the time, or if I have a nurse traveling with us, which is my dad's intention, is there a way to stock pile a number of units of blood that would be required for the time we would be traveling?  Any insight on this subject would be greatly appreciated.  Thanks

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Offline Andy Battaglia

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Re: New to the group
« Reply #1 on: May 22, 2011, 09:40:56 PM »
Hi AJ and welcome,

I see we share the same first name, but I go by Andy. The best advice I can give you is to compile a list of cities you will be visiting and email Eileen at CAF with your question. She will be best able to find the proper hospitals for you and also to give advice on how to arrange your transfusions. What type of band is your dad in? Are you also a musician?

Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999

Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org
Andy

All we are saying is give thals a chance.

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Offline EvilGeniusAJ229

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Re: New to the group
« Reply #2 on: May 23, 2011, 01:39:40 AM »
Andy, thank you for that information.  When we get our schedule figured out, I will do that.  All I know right now is that we are starting in South America.  It's a rock band.  I am also a musician.  I sing and play guitar mostly, but I also play the drums, and piano.  My godfather is also in the band and has been teaching me for the last 3 years.  He could give Joe Perry a run for his money, I think, but I will not diss Aerosmith.  They are my favorite band.  I wrote, composed and recorded a song for my girlfriend not long after she was killed in March.  I don't think I have ever seen 5 men get so emotional over a song before, but that did it.

Anyway, I am also newly diagnosed.  I passed out during baseball practice at school the week before last and spent 2-1/2 days in the hospital to figure out why my iron had nearly bottomed out and why it took such a long time to get my heart rate back to normal.  After ruling out a heart condition and diagnosing me with this, they set me up for every 2 weeks blood transfusions and exjade to prevent an iron overload.  Go figure, huh?  I blew 2 IVs in that time, they did just for the various tests they were doing.  The 3rd one was for the surgery after they decided to go ahead and put in a port while I was admitted didn't stay in long because they discharged me after that.  This couldn't have made me happier because I hate needles anyway.  Now we have to find this special padding to put under my jersey so I can do summer hockey for 6 weeks when we go back to the East coast.  My doctor promised me I can still do sports as I have before, so hopefully that will not change.  It's driving me insane watching from the stands when my baseball team is playing in the championship right now.  I want to be out there so bad.  I decided to do the port now and miss the last 2 weeks of baseball, than to risk blowing another IV later when they do another transfusion on Friday.

Well, I am off now.  I have a big test tomorrow that will determine whether or not I can graduate early.  Thanks for your help.

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Offline Zaini

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Re: New to the group
« Reply #3 on: May 23, 2011, 03:29:00 AM »
Hi Adrian,

:welcomewagon on the forum,

First of all i wanna say how happy i am to see a teenager posting on our foum :) i don't know why, i just am ,its so good to see your positive attitude and to see you taking care of yourself. :hugfriend

I am so sorry to hear about your girl friend.

Did your doctor tell you the type of thalassemia you have? because to me you seem like an intermedia,what are your hb levels before transfusion?

Good luck with the test :goodluck

Zaini.
^*^Xaini^*^

 

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