CB update -- PLEASE READ!!!

[Guest guest]

This JUST in from ’s

CaringBridge site:

(okay, now I am really crying)

FRIDAY,

JUNE 22, 2007 03:17 PM, CDT

I had a flicker of hope before I was released

last night that my MELD had not been lowered to a 7, but today my coordinator

confirmed it had. I am scheduled to have labs drawn tomorrow morning and Monday

morning, so my MELD may go back up. However, at this point I have to wonder if

it will matter. Will they simply reduce my anticoagulation meds, get a lower

MELD and submit it before it's time, again?

I had a long conversation with Dr. Wienans,

yesterday. He came directly to my room from the O.R. and was unaware that the

other docs had made the decision to lower my MELD. He tried, however, to

explain why they may do so. He told me that to sit and look at me what he sees

is a patient who has a good quality of life. I was so upset by this comment

that I had to fight back the tears, and was unable to correct him on his

assumption.

I may not have ascites or a glowing yellow

complexion but I DO NOT have a good quality of life! I eat Zofran like it's

candy and am still forced to sit with a trash can at my side at all times. I

cannot drive anywhere I want because I am often confused on how to get there or

why I'm even on the road. My memory as well as finding the correct word to use

in a sentence have suffered tremendously. And, I cannot clean my house or

vacuum the floors because it is too painful. This, in my book, does not

represent a good quality of life. I don't think it's fair that any doctor take

a look out my outward appearance and make that determination.

It seems more reasonable that they look at the

fact that my liver can no longer process the anticoagulation. And, that my

lungs are now suffering too (and I'm told by the respiratory therapist that my

liver can/will affect them, too) and I am required to use a nebulizer four

times a day. Then, of course, there is the issue with blood in my urine, etc.

All of this on top of the fact that my liver functions, albumin, globulin and

red blood cell count has been way off, tells me that I'm truly sick despite my

MELD score and appearance.

My social worker is so angry and told me she

was going to argue with all she has at today's meetings! She is terrified that

they are going to play around until I am too sick to be tx'd or that they will

lose me to an internal bleed or the like. It was somewhat difficult to hear,

but I appreciated her candor. She believes that I am a great tx candidate, that

my motivation and survivor attitude will get me through the tx with flying colors,

and that it will be a total waste to take the opportunity away from me because

I am caught in an unusual position.

She, and I, are adamant that they devise a

protocol for patients like me -- those who will HAVE to be on anticoagulates

for the remainder of their life. There needs to be a set policy in cases like

mine or the purpose of the MELD score is null and void. It was devised to even

the playing field, eliminating subjectivity. However, for people like me it is

filled with subjectivity making the whole system a waste for those with PBC,

PSC and clotting disorders! I WILL fight tooth and nail even if it is too late

to save my situation!!! There will be others to follow me that will run the

same risk of dying waiting for a liver because the doctors don't know what to

do with them and that is NOT okay with me!!! I don't care how many people I

have to piss off, or how far I have to travel to get someone to listen, I'm in

it for the long haul! There'll be change if I have anything to do with it.

, my social worker, said she is truly

afraid that I will die waiting for this to get worked out, so we are going to

push for a set protocol. Like me, she is not afraid of who she angers. She said

if she is not out on the limb alone she feels as if she's not doing her job.

She is not concerned that they are surgeons, her job is to advocate for the

patient and that's what she does. Too many PSC and PBC patients are dying

because of the MELD system (one complaint). And patients like me with a

clotting disorder are being cheated even more (second complaint). She won't

stop yelling until someone truly listens to her. I'm right there with her. This

fight has become more than just whether or not I get a tx! Things must change!

Please join me in this fight with prayers and

support! If those of you in the support group have the same issues with a

clotting disorder, or know other that do, please email me at MO425@....

This is a cause worth fighting for and the more resources we have the better.

Thank you for indulging me while I vent!

Much love,