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Extramulledary Hematopoesis!? YAY! (not...)

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Offline Courtenay1826

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Extramulledary Hematopoesis!? YAY! (not...)
« on: August 30, 2007, 07:08:40 AM »
 :rotfl I don't know how much more I can take...

I went for my follow up xrays today to find out why my pneumonia wasn't going away. Apparently, a RBC/platelet mass in my lower right lung lobe isnt allowing me to breathe fully and not allowing oxygen to my infected lobe.

So, now Im on predisone and an inhaler to dilate the bronchials (sp?) a little more. I didnt know this could happen after I had the spleen out!

Hooray for Dr. Shawn Fazio for catching this. Hes da' bomb.
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Offline §ãJ¡Ð ساجد

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Re: Extramulledary Hematopoesis!? YAY! (not...)
« Reply #1 on: August 30, 2007, 11:11:06 AM »
I'm so sorry to hear what you are going through these days, especially after what you went through recently.

Wishing you a speedy recovery :getwell
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Kathy11

Re: Extramulledary Hematopoesis!? YAY! (not...)
« Reply #2 on: August 31, 2007, 01:11:26 AM »
Hi courtney1826,

You are not alone we are here for you .Yes its very hard, still,  so far you proved to yourself that you are a strong and determine person,and has gone through so much hurdles already ,you will again.
Dont give up ,be stronger ,and you will get better,

we all are pulling in your direction
flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :
getwell soon
Kathy
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Offline Andy Battaglia

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Re: Extramulledary Hematopoesis!? YAY! (not...)
« Reply #3 on: August 31, 2007, 04:20:21 AM »
Hi Courtenay,

Do you know if the mass predates the splenectomy? Is any treatment planned to shrink the mass? I don't remember if you mentioned this before, but do you know if you're beta + or beta zero thal?
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Andy

All we are saying is give thals a chance.
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Offline Manal

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Re: Extramulledary Hematopoesis!? YAY! (not...)
« Reply #4 on: August 31, 2007, 01:52:23 PM »
I am so sorry Courtenay, you have been suffering a lot latley, but i know that every thing will just pass because you are really a strong person. You are in my prayers. :hugfriend


Manal
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Offline jzd24

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Re: Extramulledary Hematopoesis!? YAY! (not...)
« Reply #5 on: September 04, 2007, 03:38:12 AM »
Sorry to hear about your newest difficulties. You have been through a lot, and I know you are a strong person, but enough is enough! We are all here for you and hope that you feel better very soon. Thinking of you, Jean
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Offline Sharmin

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Re: Extramulledary Hematopoesis!? YAY! (not...)
« Reply #6 on: September 04, 2007, 05:21:41 AM »
I hope you recover soon!  You're a fighter and you'll get through this - we're all here for you!

Sharmin
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Sharmin
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Offline Gabri

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Re: Extramulledary Hematopoesis!? YAY! (not...)
« Reply #7 on: September 04, 2007, 09:52:25 PM »
I am sorry Courtenay, live is a continuous fight. But only by the grace of could we are still here and talking together.
For my understanding extramedullary erytrop.... is caused by insufficient blood. Many people with thal intermedia, shows this special way to produce more blood cells. In a medical book i read that it would disappear after regulary sufficient transfusion, some other abstracts discribe that a usefull therapy would be radiotherapie or hydoxyurea. I will add a link for you, hope it will be usefull for you.

http://www.erj.ersjournals.com/cgi/content/full/22/4/712

God bless you
Gabri
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Offline Bobby

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Re: Extramulledary Hematopoesis!? YAY! (not...)
« Reply #8 on: September 05, 2007, 02:31:49 AM »
Sorry to hear about the pnuemonia  :( Hope you get better soon now that you know why it lingered.  I was recently at the Dr.'s with a cold that they thought was pnuemonia.  I had X-Rays and my Extramulledary Hematopoesis freaked my Dr. out.  I've known about it since 1998 though.  Mine is in the center of my chest and it's the size of a baseball, but as long as it doesn't cause any pain I won't mess with it.  Get better soon!!!
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Offline Courtenay1826

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Re: Extramulledary Hematopoesis!? YAY! (not...)
« Reply #9 on: September 06, 2007, 12:03:24 AM »
Sorry it took so long to reply guys! its been hell trying to get better. Andy - Im not sure! I would imagine it is +...but I have other traits interplaying...Hem C, remember back? I dont know how that interacts with my minor except to make it worse symptomatically...with the spleen and all. My primary physician sent the results of the xray to my hematologist, but her office is gutted for renovations, shes working out of St Joes temporarily. For now, Im on a steroid inhaler to help open up the bronchials around the mass.
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Offline Andy Battaglia

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Re: Extramulledary Hematopoesis!? YAY! (not...)
« Reply #10 on: September 06, 2007, 04:21:40 AM »
Hi Courtenay,

The reason I asked about the beta 0 or + is because the symptoms can be very different when combined with HbC. Beta zero along with HbC can manifest as...
Quote
  Individuals with Hb C Beta + thalassemia have a mild anemia, low MCV, and target cells. Individuals with Hb C Beta 0 thalassemia have a moderately severe anemia, splenomegaly, and may have bone changes.
    http://www.scinfo.org/hemoglb.htm

A DNA test would determine your mutation, if it's not already in your record.

There is a difference between the two, but it is not always reflected in the literature, which often just gives the typical description of symptoms as mild anemia. I think it would be of great value if patients' information concerning gene mutations and combinations along with symptoms, were entered into a database so that doctors would have a more accurate reference of what to expect when they see these combinations. Brushing everything off as mild anemia is grossly deficient.
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Andy

All we are saying is give thals a chance.
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Offline Zaini

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Re: Extramulledary Hematopoesis!? YAY! (not...)
« Reply #11 on: September 06, 2007, 10:35:18 AM »
Wishing you speedy recovery Courtenay, :getwell :getwell :getwell

LOVE ALWAYS,

ZAINI.
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Offline Courtenay1826

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Re: Extramulledary Hematopoesis!? YAY! (not...)
« Reply #12 on: September 08, 2007, 03:03:30 AM »
 :rotfl I was talking on the phone with my grandmother's hospitalist today to see how she was doing - she's still very confused, and because her infections in her lungs and bladder are so bad, they have her on Levaquin. I told the doc she has thal...so to be very careful with the sulfanomide. She asked if she was minor or intermedia, and I said, we're all minors, we married non-carriers, etc. I told her mine was mixed with Hem C from my dad, and what happened with my spleen. I mentioned to her, I didnt know if the + or the 0 beta ran in our families....You know what she said?

+ and 0 beta are purely "academic thinking" and not "real" specifications.  :wtf Don't get me wrong, shes an awesome doctor, but some of the good ones even have their heads in their BUTTS!
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Offline Andy Battaglia

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Re: Extramulledary Hematopoesis!? YAY! (not...)
« Reply #13 on: September 08, 2007, 03:11:01 AM »
+ and 0 can make a big difference in thal. 0 means the gene is completely deleted and can produce no beta Hb at all. With +, there are varying amounts of Hb produced, depending on the extent and location of the deletion. We have previously had a member of this group who is a beta 0 minor and also transfusion dependent. I would say this is quite a bit different from a + minor with no symptoms. Academic? Not to the affected patients.

I hope your grandmother improves soon and am also glad she has a knowledgeable grandchild to look out for her.  :wink
« Last Edit: September 08, 2007, 04:41:42 AM by Andy »
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Andy

All we are saying is give thals a chance.
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