WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Thursday, September 19, 2013

Mitochondrial Disease Awareness Day 5: Prognosis UNKNOWN

Abby doesn't have a prognosis.

Abby has a slew off oddball findings. We still don't know which is causing what and/or why. Unique.

Many with Mito really don't have a prognosis.

There are a few that are terminal. There are some where Mito will take their life. This happens most frequently when diagnosed in the first year of life. That doesn't mean all diagnosed before 1 year will have a terminal prognosis- Abby had poor fetal movement, and clearly issues though mild in the first year-

It is russian roulette. It depends on how, why, where. A bout of the flu. A family history of asthma. Lung involvement. Brain involvement. Acute. Or fader. Bladder. Liver. Muscle. kidney. Primary. secondary. Few know a prognosis, we can guess... but for many, prognosis is unknown.

I think the term "life threatening" fits best when applied to the general population. For many patients pneumonia, flu, or a zillion other diseases that healthy folks deal with fine can cause enough damage to "threaten" the life of a Mito patient.

Though there is no prognosis, that doesn't mean no problems. It means we don't have a clue if she will get better or worse. You can see that something has pinged various systems in Abby, but not enough to disable the various systems. Just enough to let us know something is wrong.

Abby got better before, and we stand by believing given time, care, gentle handling we can help her get better again.

There are tons of diseases that have no cure and an unknown prognosis and those patients live long full lives.

Mito is no different. Unknown- waiting for us to live. Not waiting for the other shoe to drop.

You can wait around for bad things to happen, or push forward and make life happen.

At best Drs. can guess. Really though, we don't know the prognosis.

Don't let Mito define you, you define Mito.

For Abby that means, she is unique, delicate. Strong.

Every person has 52 cards to play in their life. Right now Abby is stuck playing the low point cards, but she has the same amount of high point cards as anyone else. Someone else may play all their high point cards first, but we all only have 4 aces- we do our best to play through the bad hands and hold out for those full house's and 4 of kinds- you have to have faith that the cards are all there waiting to be played, but what is unknown is when and in what order they will be played. That is no different then anyone else. The healthiest person could walk out there door today and die in a car accident. The sickest Mito patient might respond well to a treatment and go on to live a full life. All depends on how the cards were shuffled-

Prognosis unknown, and waiting for that 4 of kind.


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