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Hi everyone, I'm Dex.

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Chronic Pain
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Posted 4/21/2011 3:47 AM (GMT 0)
Hi! I'm Dex from Aus. To give you an idea of my background and what brought me here, I have a history of childhood leukemia (AML) which I eventually overcame with the help of a bone marrow transplant. As a result of the BMT however I developed chronic, painful graft versus host disease in my gut, which has also made maintaining any kind of decent weight a challenge for me. NOW it seems like something else is up (or back?), as my latest blood counts are so out of whack I need to go in for a transfusion.
Posted 4/21/2011 4:48 AM (GMT 0)
Hey Dex, it was great chatting with you in the chat room last night. I hope everything gets sorted out with your new bloodwork and that you don't need that transfusion. Can you explain what is going on in your gut for us.
When was your bone marrow transplant done and did someone in the family match. Well sorry for all the quesions, it's the nurse in me coming out. LOL

i am so glad you came over and made your introduction. More member will be alone to welcome you.
We are like a little family here. We all support each other. You will love the members.

Catch you later
Suzane
Posted 4/21/2011 4:50 AM (GMT 0)
Hi Dex,

I "think" we briefly talked in chat.... did we?? :)  I'm sorry.  My memory is down the tubes :)

Welcome to the board but sorry you have to be here.  There are many wonderful, encouraging friends here... and I hope you'll stick around.  It sounds like you've been through quite a lot. 

My name is Tina; I'm 37 (soon to be 38); and - as my name implies - I have 8 kiddos.  6 boys and then - surprise - identical twin girls that came 6 months ago.  Never know what life will bring, right?

Anyway, just wanted to welcome you.... Feel free to jump right in, ask questions and so forth.  If you need help w/ anything - just ask and someone will help you.

Take good care...--Tina

Posted 4/21/2011 5:42 AM (GMT 0)
Thanks for the chat again tonight.... you've got a great sense of humor and will fit in perfectly here, trust me!! Thanks for everything.
--Tina
Posted 4/21/2011 5:47 AM (GMT 0)
Hi Suzane. You're a nurse huh? Nurses are the best! I had a donor transplant, so they weren't from my family. It was a good match, but I still got GVHD. With my gut it's basically a lot of pain, inflammation, cramping. It's generally unhappy and attacking itself. I don't seem to cope well with anything high in fat, which has meant I've had to spend a fair amount of time on TPN just to build myself up.
Posted 4/21/2011 6:31 AM (GMT 0)
Hi Dex!

And welcome. I'm sure sorry to hear about your fight with pain but it's wonderful that you were able to get a transplant. From what I've seen of people in my life who've had transplants, often it's a lifetime of small problems here and there but the alternative sure wasn't good. I see you've already met some wonderful and wise members and I"m sure many more will enjoy getting to know you too.

Chutz
Posted 4/21/2011 6:58 AM (GMT 0)
Hi Dex,

I know we've 'met' a couple of times in the chat, but welcome here as well :)

Laura
Posted 4/21/2011 10:23 AM (GMT 0)
Hey Dex

Welcome to the HWF. It was nice chatting with you last night and this morning my time. Sorry to hear that you are here with major stomach issues. brought to you by a bone marrow transplant. Take one day at a time. Keep us posted on updates on you. We love to hear and hopefully someone could help you.

Once vagain welcome

Betsey
Posted 4/21/2011 1:45 PM (GMT 0)
 

   Good morning Dex!

               I too think I met you in chat last night! Welcome to the forum!

     There was quite a large group there last night, and made for some good fun. smilewinkgrin

        SE wink

Posted 4/21/2011 2:07 PM (GMT 0)
Hello Dex =) Hope today brings good news, and that a transfusion is not needed, but if it is, then I hope it goes well. Keep us updated on what happens, okay? It is wondeful chatting with you, and you seem like such an awesome strong person, keep it up k?!?!?
Posted 4/21/2011 3:01 PM (GMT 0)
 

  Hehe, Hey Dex!!!

 

   Well, we talk quite a bit in chat. But, I did want to stop by and say Welcome to Healing Well!!

 

*warm hugg*
     dani

Posted 4/21/2011 8:21 PM (GMT 0)
hey Dex, how are you doing today? Going to chat night tonight? I'll be going OK.

And someone just posted today with pretty much the same as your case. Her name is Trudy2.

She is working on getting her disability accepted. Hope you can hook up with her to chat.

Take care buddy
Suzane
Posted 4/22/2011 6:32 AM (GMT 0)
Hi Dex Welcome to the forum (our little family, that's getting pretty big) I'm glad that you were able to go to chat last night and get to know some of our members. It's a great bunch around here. I know they have helped me thru some awfully rought times like they are right now. I won't get into details, because this is about you. I hope you get all the help you're looking for. I'm sure you will. I hope you're having a low pain night. Take care.

hugs
Loretta
Posted 4/24/2011 12:24 PM (GMT 0)
Welcome Dex to the forum!!! I am wondering if you have ever had a bone density done. I just recently had a friend that was diagnosed with leukemia but through more examinations they discovered he had his spinal threads attached to his tailbone. This may not be the case for you, but sometimes weird, freaky-crap happens that is the least likely to happen.
Posted 4/24/2011 12:53 PM (GMT 0)
Hi Dex. I wasn't in chat, so we haven't met. I just wanted to pop in to say welcome!
Posted 4/24/2011 3:39 PM (GMT 0)
Happy Easter Dex

just stopping by to wish you a good holiday and that i was thinking of u and wondering how U were holding up Let us know when it is a good time for U to post. Be strong and take one day at a time. we are here for U.

Soft Hugs
Betsey
Posted 4/25/2011 7:42 AM (GMT 0)
Hey everyone. Thanks so much for your support. I had a bit of a crazy Easter but I'm sure things will settle down soon. I hope you're all well and full of chocolate.

Dex
Posted 4/25/2011 3:10 PM (GMT 0)
Hey Dex, nice to meet you sure wish it was under better circumstances than
Chronic Pain. Have you tried protein shakes, might help with gaining weight.
Hope you can get a low pain day soon...
Well wishes
Posted 4/26/2011 8:26 AM (GMT 0)
Hi Dex

I was thinking of you and wondering how U were doing. Please let us know. Did you have your transfusion? I hope the doctors can figure out what coutse of treatment is good for you. Please stop by and place a post when you are able to do it. We are family and I was worried about you.
Be strong

Warm Hugs(((Dex)))
Betsey
Posted 4/26/2011 9:34 PM (GMT 0)
Hi Dex, hope you are doing well, blood tests can be many, and one leads to another. I am an RN, and come here for hope and support, especially during times when pain gets high and meds seem to not be helping. One day soon, I plan to ask about experrenes with other drs. as I look for one . T
Posted 4/26/2011 10:17 PM (GMT 0)
Thanks again. News wasn't great but I guess not unexpected. We're all still processing it, but treatment has started.
Posted 4/27/2011 4:27 AM (GMT 0)
Hi Dex. I hope they can get your treatments started really quickly and you can beat whatever you're fighting. You're in my prayers and we're all here for you. You take care, and keep us updated as you can.

love and hugs
Loretta
Posted 4/27/2011 11:37 AM (GMT 0)
Dex It was nice talking to you ---Be strong you can get through this because U R optimistic Keep us updated to your progress.

Soft Hugs


Betsey
Posted 4/27/2011 12:54 PM (GMT 0)
It's definitely more AML but at least we know what we're up against. Beat it before, can do it again. Trouble is the likelihood of it continuing to come back increases with each relapse and eventually I'll have some hard decisions to make... but as far as I'm concerned we're not there yet. I feel okay today.
Posted 5/2/2011 11:11 AM (GMT 0)
Now know this relapse extends to my CSF. Still feeling okay.
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