RE: newbies, golden oldies, voodoo science and prattling

[Guest guest]

Penny - so good to hear from you and what an inspiration you are!!!

Patti

" be kinder than necessary, for everyone you meet is fighting some kind of

battle "

>

>Reply-To:

>To: " PSC " < >

>Subject: newbies, golden oldies, voodoo science and prattling

>Date: Fri, 6 Jul 2007 16:31:53 -0400

>

>The last few weeks on this site have had some glorious highs and some

>really heartbreaking lows. If I had just been diagnosed and had just

>joined this site, I don't know what I would be thinking at this

>point........

>

>First, when I was diagnosed over ten years ago, I had never even heard of

>primary sclerosing cholangitis -- who among us had? I was so sick ten

>years ago that I was told I would need to be transplanted by August. I

>still have my own liver and it has shown signs of repairing itself. My

>latest LFT's are so good that no one would begin to suspect that I have a

>liver disease. When started this group we had a rag-tag group of

>about 20 people who were regular contributors and I was eager to sign on

>after yet another trip to the " club med. " with the nasty green Jell-O.

>

>Transplant surgery was voodoo science to this old lady. The most complete

>information that I got about primary sclerosing cholangitis at first was

>from this group and a dear friend, a veterinary radiologist. I even had to

>correct my own GI when he said that children don't get PSC. I told him

>that that would be faint comfort to moms like Pam whose son Quantell was

>listed for transplant.

>

>Throughout the past (nearly) ten years I have learned that the disease

>knows no rules; it progresses differently in each of us. The same is true

>of transplantation. The one thing that I am sure about is the wonderful

>caring support that we give each other. This is an awesome group. And --

>for all of the original members -- please note that I called you the

> " golden oldies " -- not old timers!

>

>I questioned whether or not I would ever hold a grandchild, but this old

>lady now has 5! Count 'em. 5! The ten years haven't been a proverbial

>walk in the park, but I am still able to walk with my grandchildren in the

>park!

>

>Have faith,

>Penny

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