Perspectives of The Pompe World

You’d think after all these appointments we have had, and will always have, this wouldn’t be an issue. It has improved along the way as we have adjusted and learned, but they always find their way to me as I prepare for the appointment ahead.

No amount of coaching myself settles me until I get the report.

The results.

The reassurance.

With Pompe Disease, what you see is NOT always what you get and the possibility of bad news could be around any corner.

Due to its progressive nature, it’s a waiting game. We watch and wait for the moment that says “it’s progressed far enough and we must now start treatment to slow this rate of progression.” So each appointment is a potentially pivotal moment on our journey.

How bad is it so far?

How much worse is it since last appointment?

How fast is it progressing?

Is it our turn to start treatment?

Is treatment working?

Are their any complications?

At any appointment we could be given news that life is about to stir up a bit. We know it will eventually come but we don’t know when. So we cross our fingers and say our prayers before every appointment and hope for the best. The anticipation makes us irritable and anxious. Uneasy and unsettled.

Like a beehive behind my ribcage.

We have learned how sneaky this progression is and we can help but watch our backs. This means that until the appointment is over and we have a clearer clinical picture, we get worked up with worry. It doesn’t do us any good to worry and we know that too, but we still do. As with all doctors appointments that bring us news, good or bad.

I try to remind myself that these appointments are a blessing, regardless of how they make us feel. Getting the much needed answers and monitoring is not something that each person with Pompe Disease experiences and we are grateful.

Anxious appreciation are the pre-appointment jitters.