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-   -   AA patient@UCLA looking to help others (http://forums.marrowforums.org/showthread.php?t=932)

samster(OG) Mon Feb 16, 2009 03:10 PM

AA patient@UCLA looking to help others
 
Hi my name Sam but u can call me Samster I have AA im a patient @ Ucla Johnson conprehensive cancer center i received horse ATG in aug 2006 and im doing ok my counts are still low but im not scared.. Looking to make friends with people In southern california If u are in the los angeles area better I live In San gabriel valley If u are not from california I would still love to hear from you..Im still sick but running around like Im healthy u can to.

ccartbmw Mon Feb 16, 2009 11:14 PM

UCLA patient
 
Hi Sam,
I also go to UCLA. I had ATG treatment in April of 2008, as of Feb 2009 I am officially in remission. Thanks to the great doctor Paquette!! I feel great, I am exercising 3 mornings a week, yoga 1 morning, and on the off 2 days, I do water arobics. I could not do this a year ago. I could barely walk down the street. I feel totaly different. I used to live in Azusa, and my husband is from La Puente. I now live in the high desert. But I go to see Dr Paquette every other month. I make a day out of it when I drive down there. Write back

samster(OG) Tue Feb 17, 2009 01:55 AM

Quote:

Originally Posted by ccartbmw (Post 9260)
Hi Sam,
I also go to UCLA. I had ATG treatment in April of 2008, as of Feb 2009 I am officially in remission. Thanks to the great doctor Paquette!! I feel great, I am exercising 3 mornings a week, yoga 1 morning, and on the off 2 days, I do water arobics. I could not do this a year ago. I could barely walk down the street. I feel totaly different. I used to live in Azusa, and my husband is from La Puente. I now live in the high desert. But I go to see Dr Paquette every other month. I make a day out of it when I drive down there. Write back

Hi im glad some one wrote to me thank you this is my first time ever that I try to communicate with other people that are also sick. So u are just recently getting back on your feet i know that feeling not nice. How are your blood counts doing? I hope good mines are okay except for my platelets that are still low under 50,ooo and im always bruised up. How are u coping with this AA? I go to ucla 1 a month but b4 i got ATG it was 2-3 a week I usually go alone been going alone since i got sick to me it just seems like a very bad cold that doesn't go away. If u have any ?s feel free to ask anything thanks again ccartbmw

ccartbmw Tue Feb 17, 2009 05:34 AM

Counts
 
Hi,again,

My counts as of Febuary, are really good. The best since I was diagnosed four years ago.My platlets are 151,000, my hb 12.5 but the Doctor has still not taken me down on the cyclosporine which is 250 mg a day. He said on my next visit he will start to taper me down. But my kidneyfunction is good.Keep the faith, it will all turn around. Try to keep positive. I cannot sleep!!!

ccartbmw Tue Feb 17, 2009 05:42 AM

counts
 
Hi,
I just try to get up every day, as it could be my last. You never know, when hat day will come. So I try to smile and be postive and happy to be alive. Do not get me wrong I do have days where I get down. But I try my hardest to be postive.The most important thing that I feel is I try not to be around negitive people that can bring me down. Smile, Smile, Smile

Thanks
Carol

samster(OG) Tue Feb 17, 2009 06:34 PM

Quote:

Originally Posted by ccartbmw (Post 9262)
Hi,again,

My counts as of Febuary, are really good. The best since I was diagnosed four years ago.My platlets are 151,000, my hb 12.5 but the Doctor has still not taken me down on the cyclosporine which is 250 mg a day. He said on my next visit he will start to taper me down. But my kidneyfunction is good.Keep the faith, it will all turn around. Try to keep positive. I cannot sleep!!!

Hi Carol ur welcome, nice your platelets are pretty high my platelets have stayed bellow 50,000 I also take cyclosporine 175 mg per day.Does the cyclosporine give you any problems? It makes me really hot sometimes and makes my stomach hurt. So you were diagnosed in febuary of 2005? how weird so was i. I keep a more than positive attitude I act like im not sick sometimes and i even forget that I am. Cant sleep I had that problem Insomnia from the prednisone < I dont like that pill < or are you just worried?you shouldn't you will be alright lots of laughs do real good. thank you for reaching out and sharing some of your AA experiences. Sam

samster(OG) Tue Feb 17, 2009 06:57 PM

Quote:

Originally Posted by ccartbmw (Post 9263)
Hi,
I just try to get up every day, as it could be my last. You never know, when hat day will come. So I try to smile and be postive and happy to be alive. Do not get me wrong I do have days where I get down. But I try my hardest to be postive.The most important thing that I feel is I try not to be around negitive people that can bring me down. Smile, Smile, Smile

Thanks
Carol

Hello, I understand you any day can be the last for us I dont think of that But when I have a bad thought about my ilness IE i need to be hospitalized for what ever reason I think of all my friends cheering me on telling me that I can do it I see it clearly it makes me really sad and I cry of joy because I know that I have a strong support group even though I dont call on them. Ive pretty much gone threw this whole ordeal alone and just suck up what ever AA brings on. NEGETIVE people do bring you down easily but I ignore them I will not get in a bad mood for anybody not good for us to be upset bad for the heart.
Thanks again friend Sam.

susansr Sun Mar 7, 2010 02:11 AM

new patient with aa wants to know how ya feeling now?
 
Dear Samster: i am into aa four weeks now; had atg treatment with tacrolimus instead of cyclosporine. being weaned off prednisone; hate that stuff.

your notes are a bit old; was wondering how ya feel know;is life normal?
how long did it take for you to feel good again?

I'm from Boston;love California; hubby and I plan to retire to southern CA in hopefully 10 years; my best friend just moved from Northern CA to Rancho
Santa Marguarita and loves it. Can't wait to be a CA girl!!:)


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