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 AnnelidaFilms on May 16, 2010 at 9:17pm
If only love was a cure, you'd be the healthiest woman on Earth.

(I'll show you "Go Peter")
Comment by JustAnotherUserName on May 16, 2010 at 9:30pm
I love you, Amy...really I do.

It's a shame that the only reason you and I don't have to worry about going bankrupt due to medical expenses is because we have husband who are from other countries.

I have to watch your video when I'm not about to go out because I know it'll make me cry, just like this blog did.

xo
Ruth
Comment by photo2010 on May 16, 2010 at 10:49pm
((((((HUGS)))))) You are family and I know you're going to be ok! <333
Comment by ferdz ines on May 17, 2010 at 3:51am
you will be fine Amy..
you will. Ferdz loves you my friend.
:-)
Comment by SydTheSkeptic on May 17, 2010 at 6:18am

Comment by Chig on May 17, 2010 at 9:15am
You guys are always in my thoughts. It seems to me that it should not take organ failure to qualify someone for a Tx, when the organ is exerting pressure and affecting other organs.
Comment by photo2010 on May 17, 2010 at 11:08am
@Chig..as someone currently steeped in the maelstrom of the American medical tunnel of horrors..I can agree with your comment, and it extends to countless medical needs and services. I am currently spending every cent I have to pay for aides to cook and clean for me for a few hours a day, and I am on Medicare and SSDI..they won't pay a dime for my help. To qualify for MedicAID, you are not allowed to have any assets or have more than $1600 in savings!! (approx. figure) Who the HELL can live on that? In other words, to take advantage of government services, you have to be destitute and then the system absorbs you.
Sorry about the rant..I'm currently a little panicky about the future.
Comment by spacemonkey1310 on May 17, 2010 at 12:10pm
Amy, I have no adequate words for how amazing you are to me. Everything I type looks and sounds too brittle but I hope you can feel the love.

Big hugs.
Comment by Chig on May 17, 2010 at 1:19pm
Amy, check PM please.
Comment by NatureJunkie on May 17, 2010 at 1:36pm
"If only love was a cure, you'd be the healthiest woman on Earth." Yeah, what Jim said.

My sorrow at your condition is matched by my frustration that I can't think of anything that would bring you immediate help. You're a blessing to so many people, Amy. I'm wishing you instant karma.

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