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Disregard the part that says I'm on the list. I got my rejection notice today, Wenesday, Nov. 10th. They don't seem bothered that I'm starving to death or have debilitating pain. My liver is still functioning. They've scripted me an experimental cancer drug and told me to come back in 6 months.
Thank you for all the love you've been sending. There's no quantifying how much it's meant to me. Be well and enjoy your health to the fullest, Please.

Views: 410

Comment by tree on November 3, 2010 at 10:37am
Oh . . . . .there you are, pain and all, doing a real service to others. I do wish you luck, and more than that. I wish you running on a grassy hill, playing fantasys, and basking in love.. You must already have the latter, and are even framed with a quilt!
Powerful wishes for you, Amy
Comment by flophousepoodle on November 3, 2010 at 10:46am
Amy, glad you are sharing this for several reasons.
As someone who relied heavily on a web forum when I was caregiving I'm could not have made it/helped him without online guidance from real patients/caregivers. Your decision to share this can help so many. Everything from drug info to tiny things helps. Without first hand knowledge - there's so much confusion and fear. Online strangers, not doctors, helped us save dad's hearing on top of his life, as the docs first ordered a chemo that damages hearing. (he's healthy and playing music again, giving lessons, etc.)
My heart goes out to you and John and my head spins trying to imagine the struggle you are enduring. Your announcement that you are on the list was the most wonderful news.
PS * Soy , yeah, I couldn't believe there is soybean oil in peanut butter.
<3
Comment by lima on November 3, 2010 at 3:37pm
I am so very sorry you are having to go through all of this. I can only imagine the impact it has had on you and your loved ones. I had just started recently reading up on liver disease and such because my mothers cancer had spread to her liver. This is a very good informative video, and I think a great idea to reach out to others who are at a brick wall trying to find answers.

Keeping you in my thoughts and prayers during these trying times for you. I have hundreds of four leaf clovers, say the word and I will send you a bunch of them surrounded by all kinds of goodies!
Comment by Geoff on November 3, 2010 at 4:33pm
Very strong, very honest introduction. I'm glad you are on a list, glad there is some light up ahead. I honestly think this video series could be a rallying point for people interested in reforming the transplant system and for folks with PCLD.
Comment by SydTheSkeptic on November 3, 2010 at 7:25pm
Thank the goddess for sexay-voiced friends

and your fierce fighting spirit

and Ripley

Comment by NatureJunkie on November 3, 2010 at 8:09pm
Thank you for revealing all the details about how your condition has worsened, even the most painful ones. It's better to know than not to know. Knowledge is power and I hope this reaches others with PCLD. I think about you every day and daily I recite my godless prayer to the universe, "please let her have a good day without pain or discomfort." Does that do any good? I don't know, but I do know that fighting the good fight helps, and I don't need to wish you luck because you are making your own luck. Help is on the way, girl. Just hang in there. In reference to what Flop said, help will come from some places you're not expecting.
Comment by BlancheNoE on November 3, 2010 at 8:26pm
Did I say " disabilitate " ?!?
JEEzus look what 8 years of Bush did to me.
,...and people want more of these guys running not only our educational systems, but the whole country *shakes head*.
We have to educate the younger voters regarding the importance of mid-term elections. They are more important than the Presidential race. These people we send to Washington make policy, they make law. As a group they are more important than the President.
,...wait,...I am on the wrong blog?
Comment by peacenik on November 4, 2010 at 1:01am
Thanks for the update Amy. I too think of you and your journey daily. I think it is a great idea for you to keep friends informed, little by little giving us insight into what life is dishing out to you. Hang in there girl, goodness is all around you.
Comment by photo2010 on November 4, 2010 at 2:13am
Dear Amy, I am not very religious, but I am praying for a full recovery for you. As a friend of mine has often said to me, "if you've got your health, you've got your wealth". A cliche perhaps, but with much truth. As someone in chronic pain for years, with no relief from doctors (though I may be starting Gabapentin soon), I can relate to the debilitating effects of pain.
Big (gentle) hugs to you.
Comment by AnnelidaFilms on November 4, 2010 at 2:29am
Liver, sweet potatoes, rice and steamed broccoli. Is this the food channel? Amy, all our love and hopes are with you and John. Keep up the good fight and video updates. BIG cyber-hug.

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