Posted 11/22/2008 11:14 PM (GMT -6)
So sorry to hear this. I have been there and it feels, well, unreal, like things cant be real must be a dream. I was given 12 months. With a four year old and being a single mom, that was just not possible. Yet here I am, like so many others who passed all expectations. I agree with Lynnwood and your internist. As she said, there is no damage from that amount of use. Also, on the bx, don't worry. I haven't had a lung, but I've had four livers and they are bad. I've been stabbed in the head. And I was nearly lung biopsied when I nearly died from pneumonia the last time. I just go with it and let God sort things out on the what will happen bit.
You know they do all kinds of junk now they used to couldn't do. Remember your condition pushes you to the front of the line and gets you the best organs. THese centers operate on "success rate" and they are very determined for your treatment/transplant to be a success. I know you are strong, Carol, and that things now seem near hopeless, but with the half empty "truth" of the glass, there is also the half full. We each have our own destiny, and you don't know what yours is yet. It's so important for you to realize how important you are to everyone who knows you and how much we care and cherish your friendship. I know this is way hard, harder than what I did, and I can only tell you how I got through.
First off, I was horrified and sad by my family's reaction. They just didn't want to believe it and acted like I told them I was changing my hair color or something. It was an equivalent to "that's nice dear". They just can't process it, don't want to believe it, and were kind of selfish about it. So what, it's their problem. I certainly had enough of my own. But it made me feel so alone.
Second, I went with the dizzy, unreal feeling like it was a gift from God. And I think it was. I fell apart time and time again, but the dizzy unreal feeling from the news I was given forced me to only think about the here and now and really mundane things, it disarmed me from my speculations, which were often grim. By the time I was in bad shape, I had convinced relatives to deal with the technicality of a will and custody. But until then, and it was a long 12 months, I just was a good soldier for the doctors. I lived it one day at a time and was a little more selfish about doing a few things I wanted, like spending as much time as I could with my sons or just being lazy. And I wallowed when I wanted, and it helped me. I was careful about driving and dangerous activities since my mind was stressed on this natural buzz the good docs had given me by turning life upside down in a relatively casual way,I thought.
Third, having gone ahead with the torture and surviving it against the odds, I realize that my life after treatment has had some meaning and it was worth me getting treatment, however guilty or scared I may have felt, I was meant to go on for a reason I couldn't see back then. You have been led to help and help offered for a reason.
Now for the joke my bf told me:
A man was stranded on top a building in a hurricane. A guy came by in a boat and asked him "do you need any help?"
The man replied, "no, God will save me." The storm raged all around and the man became afraid.
Then a helicopter appeared, and someone called down to the man, "we are coming to get you."
"No!" the man called out. "God will save me."
The pilot on the helicopter argued with the man but had to leave as the storm suddenly got worse and a great wave came and swept the man away.
The next thing the man knows, he's at the Pearly Gates, and he calls out to God, "why didn't You save me?"
And God replies, "I sent you a boat, a helicopter, what more did you want?" ;)
Love to you Carol, and I hope you laughed a little. I know you will make it through this, and things will work out, I just know. I am able to be on the computer more now due to pain med increase *sigh* if you need me. Try to float down the river of Denial for a while, and do what you need to do. You deserve tiptop treatment and a good outcome. You have a destiny you may not know now. But I can look back and be glad I fought, though sometimes it didn't seem worth it, or I felt others were more deserving. We don't get to make that choice, I believe God does and it is my job to reasonably try. I don't mean to sound preachy, but there is some even sort of random method to the madness of life, even if things seem completely random and meaningless now.
Know I'm so sorry about this news and the "number" they gave you. There is more to you, me, anyone than that and they are nearly always wrong in their estimates, since they operate on worst case. I have faith in you and know I'm praying for you and Barb and I know that things will get better, you both have helped me so much. I just hope you go through the motions, they wouldn't be pushing if they didn't think it was worth it. I hear about so many post-liver transplant patients who were down to their last bit and things came through, and they are doing way way so much better, amazingly better, like some going back to athletics and stuff. Please know I'm here for you whenever you need a leg up, in horsespeak! ((((hugs))))
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids