Re: AIH -

[Guest guest]

hey Barbara thanks for the response, I have three pins, one green for the

organ, and for hep c red and yellow,

I have a few of those saying as well. I got it from Debbie Vega, she is

president and founder of LOLA< Liver organization for Liver Awareness.

But i was surprise no one posted.

Thank You

Rios aih NYC

[Guest guest]

Hi ,

I was born in Manhattan and I lived in Sunnyside, Queens and Manhattan. I now

live in Dallas, TX but I'm still a New Yorker at heart and I have a big mouth to

prove it :-). I'm not sure which doctors your friend in MA took her son to or

what they told her.

If he were my son this is what I would do.

Immediately - ask the doctor for a referral to the New England Medical Center in

Boston.

Next - run don't walk to NEMC Boston!

I have never been there but I've heard they are excellent. They treat children

as well as adults and have an excellent Gastroenterology Dept. I have found

that the medical centers have a group of gastroenterologists, which specialize

in hepatology and only see people with liver problems. So they are more

familiar with these conditions than most other doctors. They will evaluate him

and make sure he gets the proper treatment.

You're right this past week was National Organ Donor Awareness week. I'm sorry

to hear that it's not promoted more in NY. With the millions of people in NYC,

they could probably get a huge amount of people to become donors. Here in

Dallas/Ft. Worth, they're pretty active all year long and we have about 60%

signed up. Most people don't realize that of all the donors only a small

percentage of the organs are good enough to be used for transplants. If you

like, I have a green ribbon pin and some larger round " Don't take your organs to

heaven - heaven knows we need them here " pins I could send to you.

If you're interested - email me at barbara-ann@... and I'll get them to

you.

Take care,

Barbara A.

..

--

On Fri, 30 Apr 1999 10:23:54 MRios81143 wrote:

>In a message dated 4/28/99 9:23:18 AM Central Daylight Time, MRios81143

>writes:

>

><<

> I'M 32 MALE WITH AIH, I USUALLY READ THE MAIL AND TALK 2 PEOPLE ON THE SIDE

>INSTEAD OFTHE LIVERSUPPORT, I'VE HAD AIH FOR ABOUT 11 YEARS AND ON THE LIVER

>TRANSPLANT LIST HERE IN NYC. THESE LAST COUPLE OF DAYS I HAVE NOT HEARD OF

>ANYTHING ABOUT ORGAN DONATION SINCE I BELIEVE THIS IS THE WEEK, OR FOR HEP,

>I KNOW I HAVE A RIBBON FOR THE OCCASSION WHICH I WEAR.

> THIS WEEK I WILL GO FOR MY REGULAR BLOOD WORK,

>CBC-LIVERPROFILE-AMONIA-SUGAR-ETC. i'M CURRENTLY ON 5MG PREDISONE AND 50MGS

>IMURAN AND LACTULOSE. PS 50PDS OVERWEIGHT.

>

> I CURRENTLY TALK TO A LADY OUT FROM MASS THAT NEED TO TALK TO SOMEONE ABOUT

>HER SON, NOW IF ANYONE CAN HELP WITH A TIP LIKE GERI, I KNOW U'RE ALWAYS

>AROUND, SURE BE GLAD. HER SON HAS HIGH ALT AND SHE SAID THAT THE BLOOD TEST

>FOR HEP OR OTHERS COME OUT NEGATIVE, HE IS ALWAYS TIRED AND HAS JAUNDICE,

>SHE HAS GONE TO SEVERAL DIFFERENT DOCTORS ABOUT THIS PROBLEM AND THE SAME

>RESULTS, I KNOW FROM EXPERIENCE I WAS TESTED FOR AUTOIMMUNE SEVERAL YEARS

>AGO AND IT CAME OUT NEGATIVE. IT LAST YEAR AT NYU HOSPITAL THAT IT CAME OUT

>POSITIVE. i TOLD HER I WOULD GET BACK 2 HER, I HAVE INFORMATION FROM

>BEFORE ABOUT AUTOIMMUNE THAT I GOT FROM THIS GROUP. SO PLEASE ANY INPUT,

>AND KIMBERLEE I FEEL THE SAME. EVERY THING IS GOING GOOD, HAVE A CAR

>APARTMENT BUT NO DOG, BUT A BIKE.

> AN AS WELL PLEASE TELL ME HOW SOMEONE CAN BE PART OF LIVERSUPPORT SO THAT I

>CAN SEND THAT INFORMATION.

>

>

> LOTS OF LOVE

> MIGUEL RIOS

> NYC

> PS. I WILL ALSO SEND RESULTS OF MY BLOOD WORKS. THANK U AND GOD BLESS >>

>

>

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