After the show, the work still isn’t done: managing symptoms and stress

This week was utterly, and completely EXHAUSTING.  To top it off, Bobby felt like he was coming down with something over the weekend - tight chest, pain when he coughed, difficulty breathing while lying down, and tired. The big day, the one causing the most angst, was Wednesday (ok, Tuesday too because we met with the actual surgeon).  Bobby had 8 separate appointments: liver scan, CT of lungs and abdomin, X-ray of chest, pulmonary function tests, walking eval, clinic and other doctor appointments.  Clearly, this was the absolute worst week to fall ill (as if there is ever a good time...).

Why did these relatively small symptoms scare me (us)?  Bobby's CF exacerbations regularly start off in this manner.  He would feel "eh" for a couple days and then BAM!!!  Headed to the E.R. because he can't breath. So, how do we manage this never-ending cycle of stress and the symptoms?

                                                       (Photo courtesy of Tony Arenas)

First, family and care givers, you have to be actively involved in the CFer's care.  You have to be on a first-name basis with the doctors because they need to see the patient has support. More often than not, you will be the one discussing symptoms, medications, and coordinating care for the patient.  Does that mean do it all on your own? NO!!!  Enlist family and friends to attend the appointments too.  Bobby and I have a list of family and friends to call when we need help.  Typically, his mother and/or I will go to these appointments with him, and our family and friends will take care of our munchkin for us.  My dad was lined up for Thursday's appointment to go in my place, since I had work obligations that required my attendance.  (Also, Thursday got moved into Wednesday, so thankfully Bobby got a day off!)

Second, you need to track the CFer's symptoms.  In my blog from the other week, I mentioned an app called CareZone (and no, I do not receive any compensation from them for mentioning or recommending their product).  Knowing the kind of pain, amount, and location is very important.  Plus, tracking symptoms like headaches, body temperature, oxygen saturation levels, and overall symptoms on a regular basis will help you, as a team, determine what symptoms are present before an exacerbation occurs.  Also, it will help to know when it's something minor (like a cold) or major (like an exacerbation).

Finally, how do we manage stress?  There isn't a magic statement I can make here to help guide you.  I can only suggest what works for us.  Communication. Seriously, that's it.


(Photo courtesy of Eden Anderson)

Bobby and I talk about it all: the good (Aiden reading so well), the bad (what happens if he doesn't get on the list), and the ugly (dinner the other night isn't feeling so great in my tummy).  We have had a few instances where it was obvious the communication was lacking and so we had an argument.  But we shut up when one person is talking and explaining their frustration, then vise versa.  We literally talk  until we have worked it out.

Then, we talk to our family and friends - everyone knows what's happening.  I discuss everything with our parents and siblings, and from there, they share it with aunts and uncles.  We have a strong telephone tree going on.  It really works well for us.


(Photo courtesy of ArtfulCARE)

We also review the calendar for the next week regularly.  If an appointment requires coverage, we get on it immediately and add it to the calendar so there is no questions later about who's going where and when.  And, once a week, I contact all the coordinators at the hospitals to give them a status update.  It's a LOT of communication!

But, there's still stress, right?  How do we come back from this and into the land of "happy" again?  We spend time with our son, and we spend time doing fun things as a family.  And, we express our gratitude to each other.  School and work take up a lot of my time, and then Bobby's medical stuff takes up almost the rest.  What little "free" time I have, I focus it on my kiddo.  That means reading to him every night, football Sundays, and other activities on the weekends.  Finding a hobby works for others too.

Most importantly, if you go from stressed to hopeless, you HAVE to talk to your doctor.  Too much stress for too long can wreak havoc on your system, and seeking medical help is important when you're in too deep.  It's not weakness, believe me.  And I encourage you to talk to your doctor about what's going on in your life.  I did, and my doctor (who doesn't prescribe medications very often) gave me some medication to help with any anxiety.  She understands where we are at, and said she wants to see me more to make sure I don't slip into depression or anxiety disorders.  As her patient (and a mother), I really appreciate that she has my back while I'm supporting Bobby.



I hope this has shed some light on tips and tricks to manage stress and symptoms of someone with CF.  I'm available to chat too, if the need should arise.  You're not alone, the impact of CF on families and what it's like being a CF sibling through the Boomer Esiason Foundation's Facebook page (click here to see more).