Awakening
By Dave Davison
Last Thursday I returned home from the hospital. I negotiated my way down to only nine days instead of the planned 14. Had it not been for my wife promising the doctors she would make sure I did all my treatments, I’d still be there. Thank you dear!
When I entered the hospital this time, it had been after a several-week struggle of a tight chest, shortness of breath and an extreme lack of energy. This was only the second hospital stay I’ve had due to cystic fibrosis (CF). I had contracted methicillin resistant staphylococcus aureus (MRSA) during the first sinus surgery I had last year and it was beginning to get the best of me. I didn’t like the idea of having to go in, but I was tired of being so tired and I knew it would help.
My sixth day there, they put a young lady in the room next to me. I knew she had CF even though they hadn’t posted a sign outside her door. It’s not hard to spot all the other rooms that have CF patients in them. There is the sound of a percussor coming from behind a closed door, a calorie intake sheet taped along side the red ‘STOP’ sign (indicating that gown and gloves must be worn when entering,) and, finally, the yellow cart marked ‘ISOLATION’ parked in front of the room containing said gowns, gloves and masks. To me it was obvious she had CF, but those were not the reasons. It wasn’t her appearance either, because I saw only a glimpse of her. It was the horrible constant cough. It almost didn’t sound human to me and her voice was a shallow, raspy whisper. It scared me. The consequences of CF seemed to hit me for the first time.
My overall health has been fairly good and though my grind with CF began many years ago, I just didn’t know it. I was diagnosed at the age of 34. I am now 46. I have always felt blessed that I was diagnosed so late. Not knowing what was wrong with me, I thought all I had to do is fight through the current problem I was having and then I’d be fine.
When I was a child and young adult, those problems with CF came in the form of a constant stream of sinus polyps and subsequent surgeries. Yes, there were breathing problems too, but at my young age I thought it was because of my sinuses.
My goal then was to be just like all the other kids. I ran, jumped and played just as hard as all my friends no matter how hard I had to fight and struggle to do so. I would not allow myself to stand out as “sick”, or “slower”, or “not as good as” everyone else. I believe it was my attitude then, that helped me physically as time has continued. It kept me active and it kept me ignorant of what I was up against.
So, now that you know how I got here, let’s talk about today. I am grateful for today and looking forward to all my tomorrows. It was looking at the tomorrows and hearing that young lady in the hospital room next to me that made me so scared. For the first time, I saw what tomorrow could bring and it’s forced me to do some hard thinking.
Over the past 12 years, since my diagnosis, I’ve been living with the knowledge of CF but not the reality of it. I’ve been looking at it from the outside like I was alone and unique in my situation. Many things about this trip to the hospital have brought CF front and center. One of those was being introduced to the CF Roundtable newsletter. I was handed a binder full of issues and as I began to read I realized I wasn’t alone and CF is a real part of my life. (Something my doctor had been telling me for years.)
I started taking inventory of the last few years and found that I had better sit up and start paying attention. Three years ago was my first hospitalization. Two years ago I had ABPA (allergic bronchopulmonary aspergillosis) which had me down and out from September until April. (Hated the steroids.) Every fall, it seems easier for me to start having problems and my PFTs proved it. Instead of having “MILD CF”, all my records now indicate “MODERATE CF”. Yes, for the first time, I have realized I have a membership card to the CF club. It doesn’t matter that I didn’t send in an application, or that I don’t want it. I can’t refuse membership.
I also realized I was still that same little boy who fought so hard to be just like everyone else. I’d been trying to live my life as if there was nothing wrong so no one would look at me like it was. All those years of convincing myself I was okay and not letting anyone see any weakness was still forming my actions; this time to my detriment.
Yes, I’ve learned a lot about myself these past few days and I’ve learned all of you are right there with me. I think the best thing to keep in mind, as we live our lives with this disease, is that we are not alone. We can learn from one another and hold each other up through our experiences and our knowledge.
Here is what I determined. It may sound simplistic, but if you have to break it down to the basics then that is exactly what you must do.
- CF, as with any task we undertake, must be done with a plan and a goal in mind.
- It is not easy to comply with treatments. For me it was hard even when I tried half-heartedly. So it won’t be any easier doing it as I’m supposed to. Let’s face it, daily time with nebulizers, vests, sinus irrigations and pill after pill is a pain. How do you fit all of it into a normal day?
- Becoming disciplined in your approach is key. Schedule your daily treatments and be determined to follow through. If something keeps you from your schedule, be persistent in completing your treatment at the soonest available time.
- Figure out where your stumbling blocks are and find solutions to overcome them. Write it out. Sometimes I find it easier when I have it in black and white. I can go back and look at it when I need to.
- Keeping a positive attitude is essential. Make things fun and look for the “funny” in all situations. I made it my goal to make every hospital staff member I dealt with either laugh out loud or at least smile. I wanted them to feel good when they left my room. And that made me feel good!
- Life always throws curve balls. At least with CF we know what the next pitch is. Use that knowledge to your advantage. Take your best swing!
- Remember…we cannot depend on others to make us do our treatments. Even though our families love us and want to help, we can burn them out with a continued lack of trying and a poor attitude. In the end it is up to you, no one else.
- Most everyone has a sense of “spirituality”. Mine is a faith, trust and relationship with my Savior. Use your faith. Know what it is you believe in and why.
So this is my plan. I hope that I have joined many of you in similar commitments to the way you live with CF. I also hope that others will join by implementing these plans and even expand upon them. In each of us there is unique knowledge and lessons learned. Let’s turn to one another and build our strengths through sharing our hopes, experiences, laughter and yes, even our pain.
Dave and his wife, Julie, live in Council Bluffs, IA. Dave works for a printing company in Omaha, NE.
