Behind the scenes work to get on a transplant list

There are many days I question my sanity and ability to get through it all.  Unfortunately, this week is no exception.  Over the past two months I've taken on one of the most challenging roles of my life: medical coordinator for my husband's cystic fibrosis management.  This is on top of taking 9 credit hours in college (each semester), working 50+ hours per week, AND raising our 6 year old.

Since our very scary December 2014 ICU stint, Bobby's CF condition has deteriorated.  We are at the point now in the disease that getting a double-lung transplant is necessary in order to survive.  Getting on the list, however, is NO cake walk!  We have been working with Henry Ford Hospital (pulmonary and cardiac team) and Harper Hospital over the past three months just to get him listed. We are nearing the end - with the goal of him getting on the list by October 20th.  Unfortunately, however, scheduling and attending the myriad of appointments and labs is taking its toll.

I've had to coordinate 14 appointments for this week alone.  Also, he is required to have at least one member from his care support team attend these.  His whole family has contracted pneumonia last week, so that means I'm his care support team this week. (Thankfully I can do most of my job remotely...)  It's pretty exhausting, but I have found an app for all of us to use to stay up-to-date with Bobby's care.  I'll touch on that in a minute.

This week is the BIG week: MRI of his heart today; transplant surgeon appointment tomorrow; lung scans, CT scans, full pulmonary function test and other lab work, and infectious disease doctor meeting on Wednesday; clinic on Thursday; and psychologist appointment on Friday. WHEW!!!!!  Oh yeah, I still have class at night and meetings during the day....

 



So, how do we manage it all?  If you don't have a medical tracking app, I highly suggest you look into getting CareZone.  This app allows you to track it all, order prescriptions, keep a journal and notes, share calendars, and so much more. I have found that, with Bobby's complex care, this app has become essential to ensure everyone is on the same page.  Also, I got a gold star from the transplant team for having all of this information and tracking data at my finger tips. (GO ME!!)

So, while this app won't necessarily make my work and school life easier, it definitely makes my medical coordinator job much easier.  Stay tuned... we'll have more updates over the next couple weeks on how he's doing, and tips and tricks for managing care for someone with Cystic Fibrosis.