Thursday, January 28, 2010

The Verdict

Michelle has talked with the team.

Seems the meeting ran long today, as she called me at 9:17am and hadn't heard from them yet.

Nerve-wracking, cause if you don't hear from them right away your mind starts to run wild.

The final verdict:

Michelle has been unanimously approved for live-donor surgery!

If a suitable cadavar comes up in the meantime, she will get that, but otherwise they are looking at booking an OR for her ASAP. The news of her recently diagnosed heart condition made the decision clear for everyone. No more bandaids. Michelle needs a new liver.

This is amazing news! Finally! She has been assured there are no take-backs this time, she will be getting a surgery. We will be partying it up BIG. And by big I mean probably low key like a round of Dairy Queen with the girls : ). But our hearts are swelling big right now with joy, and we'll do it up right when Michelle is feeling better.

Thank you everyone for all your prayers. Please continue to pray for Michelle and Miss M while they wait for their surgeries, that the doctors will perform with excellence, and that Michelle will be healed of this suffering.


from Michelle.... twas the night before Thursday....

Well here I sit at 1:09am. It's officially Thursday now. The doc's will be meeting in less then 6 hours. My specialist asked to see me today. He wants to be prepared for today's meeting and tells me that the shortness of breath I have been having is indeed related to my liver failure. I have now developed a cardiac condition related to my liver. Okay now we have liver, gallbladder (RIP), spleen, kidney's and heart all involved. Help!!!

I talked to Miss M. several times over the past few days as you may imagine. She is still waiting to get married, have children etc even as she stretches near the middle of child bearing age. She melts me. After hearing the dismal stats shared by the surgeon (46% of their list died last year, they have the worst STATS in North America for numbers of completed transplants).... we are losing hope of a cadaver liver materializing in time. Meghan writes another letter urging the team to schedule surgery for March (the next available slot). She wants to move all our lives along to the recovery and baby making side of the equation! Amen sister!!!!!!!!

Well this week I have had a lot of chance to lie in bed and therefore think of my lot in life. I have been so blessed throughout my life and even now. I have so much real love in my life. It is the only thing sustaining me now. I cannot eat. Food makes me nauseaus and in pain. It`s not worth it. I just economize. Yes... banana milk shakes (Dairy Queen are best) still make me smile.

Thank you to Bob and De Lollis family. You have always shown me your true hearts, shared the richness of the blood the flows through your family with me. I have sat on your laps, jiggled your chin and smelled your sweet perfume. I have laughed and heard your stories and seen your babies grow. Thank you for filling my childhood with the vibrance of your family and the strength of your characters. You all got together and bought me a laptop computer so that I can stay in touch while I am in bed. Thank you so very much. I love you all.

And there`s my work who remembers me after all these years now and gifts me to make sure I can celebrate Christmas. Thank you!!!! Your thoughtfullness and generosity is uplifting and brought me so much joy. I love you all.

My mom and her husband are living with us now. They have 2 rooms upstairs running as their office and bedrooms. The Tot has gotten used to finding available hands, hearts and love in the rooms upstairs. Between the 4 of us he has someone to play with, eat with, cuddle with or talk to. It`s nice to see him growing with the strength and numbers of family around him. I don`t worry as much now when the wear of going up and down the stairs necessitates a cat nap. I can easily pass him to my mama for awhile til I catch my breath and catch a few z`s. If it wasn`t for my constant pain I might say life is okay for now. But, it`s not. I`m not doing anything for myself anymore despite herculean efforts every day. No amount of effort succeeds in getting me past the prison of disease in my body. This is a huge departure from ME. Thank you mama and Jack for being me when I am not.

Oh my docs, please hear me and listen to your hearts. Please feel confidence in the skill behind your eyes and in your hands. You can do this for us. You can set us free to get back to our lives and live to the fullest. You won`t be sorry. You will affirm life. I PROMISE. Please bring me joy at 9am tomorrow. Please please please god. Please Lord. I beg you. Please. Set us free to live again. Thank you for all that you have offered me and my family. I ask you for this one more gift of life.

Monday, January 25, 2010

Staying Hopeful

Michelle walked into an appointment today and was met with an overwhelming "you look fantastic" from one of the surgeons. Say What??? And to top it off, when Michelle said Tater tot was in daycare outside of the home because he struggled with seeing her so sick, the same man replied that it was normal for mothers to want time to themselves when they had children this age. OH MY GOODNESS. He does not know our Michelle!!! She stood her ground and had her husband, mama, and Mr.J by her side.

That being said, there were some positives(for lack of better term) to come out of today's appointments, ie: recognition of her pain, increased MELD score, a suspicious lesion on the liver that needs an MRI ASAP, kidney enlargement, weight loss... And for those who don't know, Michelle has had a broken pager from the transplant team for months, they told her there was no urgency to replace it. Well she left that office today with a shiny, brand new, blinged out pager!

So it could go either way at this point, whether they will increase her priority for transplant. The team will meet on Thursday and hash out their thoughts and educated opinions. Please everyone pray for this team to have the wisdom and heart to guide them in the best direction for Michelle. Her best chance is with a whole cadaver liver. We need to will this pager to go off! Live donor surgery is not off the table yet, but the team has had reservations about this thus far.

So that's my second hand summary on the current situation. Please be in prayer for Michelle and for her family. And although we don't always understand how decisions are made, or why things are said, please be in prayer for the transplant team. The job they do is hard, they work with very sick people and very few organs. I believe they do care about Michelle.


“If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I still have a dream.” -Martin Luther King Jr.

We'll Let You Know

Michelle's team does their assessments on monday, has rounds thursday, then get back to the clients after that. She will likely not know the plan until after thursday. Please respect the family's wishes for quiet and rest, they are trying to limit phone calls at this time. Not that they don't love you all! But they are very exhausted right now. As soon as there is news, they will get the word out. Thanks!


Assessment Day

Michelle's ER visit would not be one I would describe as successful. In attempts to treat her pain she ended up with only a little relief and a lot of nausea. The doc not wanting to call in a liver specialist, or do much more himself that night...back home she went. Today is her appointment with the transplant team. Please hold her in your thoughts, and pray that the team will decide to prioritize her transplant.


Friday, January 22, 2010

Too Much

Michelle is in Emergency tonight. Her pain has been just terrible, despite her and her doctor's best efforts to control it at home.

The last few weeks have been mostly spent in bed. Her abdominal pain is unmanageable, her vomiting frequent, she has had muscle spasms that take over her face, numbness and pain in her arms... Her liver damaged and cirrhotic, a blood clot blocking it's major blood vessel. Her heart showing signs of wear and tear and her kidneys enlarged as they try to keep up with the portal hypertension. Her spleen grossly enlarged, complete with an aneurysm. Some new startling symptoms suggest possible spinal nerve compression from her oversized organs. Varices popping out of her abdomen. She needs our prayers. There is an appointment scheduled for this coming monday, Michelle's 3 month check-in with the transplant team. Please Lord will they now have enough evidence to prioritize her on the transplant list.