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).

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.

Welcome to my blog! What is Cystic Fibrosis....?

Welcome to my blog – LIVING WITH SIXTY FIVE ROSES!  My name is Michelle Brown, and I am the wife of a man who suffers with Cystic Fibrosis (CF), a debilitating genetic disease that affects 30,000 people here in the U.S. alone.  It is a genome mutation that causes persistent lung infections and progressively limits the ability to breathe. In people with CF, a thick buildup of mucus affects the lungs, pancreas and other organs.  Often, this disease is terminal, with double-lung transplants being the only option to prolong life. 

 So why “sixty five roses?”  I was touched by the story of Mary Weiss.  She was a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. She called on many organizations seeking financial support for CF research. Mary's 4-year-old son, Richard (Ricky), listened closely to his mother as she made each call. After several calls, Ricky announced "I know what you are working for." With some trepidation, as he did not know what cystic fibrosis was, Mary asked, "What am I working for, Ricky?" He answered, "You are working for 65 Roses." Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. It does, however, conjure up hope, inspiration and love.  All things I hope this blog will do.



I met my husband, Bobby, when I was in 4th grade.  I knew then that I would marry him. I learned he had CF when we were freshmen in high school.  We maintained a friendship all throughout our school days, but became inseparable at 19.  We married at 25, and welcomed our beautiful boy at 26.  However, this is no fairy tale story.  Being a care giver to someone with a chronic illness took its toll on our relationship.  We divorced in 2009 after a long struggle.  Then, in 2013, we came back together and have recommitted ourselves to our family.

 

 

 

Why do I share this background with you?  Simply because we are not alone.  I will chronicle our lives with this blog, in hopes of having people understand what it takes to manage this awful illness, and in hopes that those who are going through the struggle can share their success stories to inspire others to not give up hope.  Bobby will be placed on the double-lung transplant list by October 20th. I welcome anyone who’s going through this, been through this, or expecting to go through this to be active and share in my commitment to a community of love, hope and inspiration.