The Ark

Whatever floats your boat...

,...with a thirty pound liver baby.

Unfortunately, our road trip this year was not for fun. John and I spent a week at the Mayo Clinic in Rochester, MN last month in the hopes that I might get liver re-section surgery so that I could re-gain some semblance of quality of life but due to the plurality and distribution of my cysts, I am not a candidate for the surgery.
Polycystic liver disease is a hereditary disease caused by mutated genes. Cysts form and then the liver attempts to displace the cysts by growing more liver. The cysts themselves cause pain as they form and the pressure of the the enlarged liver on other organs and nerves causes more pain. I've been sick with it all my life but was only diagnosed last year after finally demanding that someone look inside of me. I was adopted or it might have been found sooner. The doctors first thought that it was the more prevalent Polycystic kidney disease, but it is now confirmed to be PCLD.
My liver had a growth spurt in the last 2 years which has made me quite ill and is the reason that I have slowed down considerably.
If you choose to, you may see a scan of this thing and hear the extremely emo version of this story by copying the following link into the browser :



,...but I warn you, it is not easy to listen to. For those of you here who knew about my condition and have shown me support, Thank you. It means a lot to me. I was hoping to be "healed" by the re-section surgery so that I could return in triumphant "BlancheNoE" style, but the universe has other plans for me. I will still be here and participate when I can.

I am actually very fortunate in that I have options. When I'm no longer able to work and I lose my insurance, John and I can move to Germany so that I can still get care. We may in fact go sooner if it turns out there are medical options available there that are not available here. Most people don't have these options and it breaks my heart to think of them. I am also very fortunate that my kidneys are in good condition. My liver is in the very early stages of failure but when it does fail, I will be eligible for transplant. Polycystic kidney disease patients, who also sometimes suffer from gargantuan livers, can not be transplanted unless they have a healthy kidney.
,...and speaking of fortunate, I have the most wonderful husband a wife could hope for. I don't know what I'd do without him. His love is my sustenance.

I won't be blogging about this directly after this post, but I felt compelled to let you all know why I've slowed down and why I may not seem quite like my old self. I am doing my very best to adjust but having a hard time. To each of you out there who deal with disease and chronic pain, I weep for you as for myself. I don't yet know how you do it but I'm about to find out. I hope I find the courage in me to allow this to make me a better person.

,..and to all of you out there, I love you and I'm so very glad to have crossed your paths. I am much richer for it.

Amy

P.S. GO PETER !!! (videolympics)
P.P.S. You're all wonderful
P.P.P.S. I'm not fine now but I will be.
P.P.P.P.S. My next post will be a repost of a comedy short (since I'm letting my other ning account expire, I'll be reposting the stuff that was embedded from there).

Views: 28

Comment by LtAdams2247 on May 17, 2010 at 6:26pm
Comment by Pypermarru1 on May 17, 2010 at 6:29pm
You are in my thoughts, Amy. My heart is sick with concern.
You got me so choked up I had to get up and walk around my kitchen for a moment.

It kills me to hear your voice crack. It is difficult to hear the woman that has brought me to tears of laughter would be in such pain.
If I could, I would hug you and take on alll your sorrow, if only for a moment.
Comment by OmegaSquad on May 18, 2010 at 10:15pm
Positive vibes to you and John. I'm glad you are fortunate to have people around you who care. Get well.
Comment by flophousepoodle on May 20, 2010 at 5:11pm
Crying.
Love you Amy and John and all you stand for
You are loved, near and far.
I am not so far away if you need anything.
Comment by investigate2 on May 23, 2010 at 7:08pm
Amy, I adore you. I am profoundly grateful that you are in my universe. xoxoxo
Comment by peacenik on May 30, 2010 at 1:39am
Amy my thoughts are so with you right now. I too, am wishing you instant karma.
Comment by Jim on May 31, 2010 at 5:21am
I'm sorry, Amy -- I've been away from the Ark for a while and I just heard the news. I am very sad to hear about your condition, but I wish you the best possible outcome. Sending you (and John, too) the courage and strength you need to get through this. Much love, Jim xo
Comment by gabrielized on July 2, 2010 at 10:44pm
Dear Amy, you are in my thoughts and prayers a lot, and I keep looking for anyone other than Mayo's to help you (since I hate them - heh). I'll keep looking. Sending good vibes your way if they can help at all.
Comment by frankie-farkle on July 18, 2010 at 5:47pm
Holy shit Amy - I am sad beyond sad to hear this. Even though I've not been around much, you've always made me smile big time - from your early LV bathtub singing to your lost canoe - and I am sending you (and the Pen Man) as much good energy as I possibly can. Love you! Frankie . . .

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