When Cystic Fibrosis is Out of Our Control

There are those people that go with the flow and don’t stress as much about life events, but I would say a majority of people want to have control over how life pans out. I’m certainly the kind of person that needs to know how things will happen, I need to have a plan, and I worry about how my life will fall into place. Basically, I have a need to be in control. I have, for the most part, always maintained control over my disease, which is the most uncontrollable factor in my life. When I get infections, I get antibiotics, the infections clear quickly, and I am able to continue on with my life the way I have planned. I’ve never had any major complications, besides advanced lung disease that has slowly progressed, so I can say, for the most part, there have always been immediate solutions to my CF problems. I have been in control of how I am able to manage CF.

This has most recently changed for me over the past few months. Developing a persistent pneumothorax (lung collapse) that has required 3 hospital stays a few weeks each, 3 chest tubes, and finally surgery to hopefully fix the issue for the future, has required me to take each day as it comes. If you are interested in understanding more about pneumothoraces, there is a previous CFRoundtable article on the topic. (I have had one before a few years prior.) These hospital stays have tested my patience and it has been very difficult and stressful to try to accept the loss of control in not knowing when and if my lung will collapse again. Before this episode, in the fall, I was the healthiest I had been in a long while, with a great exercise routine, I felt my lung capacity improving. These few months of illness has knocked me off my feet completely and I feel as though I have a mountain to climb to get back to the condition I was in before. My endurance, energy, and weight have all suffered.

In between episodes of collapses and since my surgery, I have tried to take on a “one day at a time” attitude. This has been beneficial in helping to keep stress levels down. If I were to stress every moment about my lung collapsing again tomorrow, next week, or next month, I wouldn’t be able to live my life. I would be a complete basket case. I certainly have my moments, but overall I feel as though I have been able to maintain that mindset and just see what happens. I try my best today and I wake up to see what tomorrow brings. Adversely, I feel this has at this same time, somewhat diminished my enthusiasm for future events that I have planned or want to plan. Because I just don’t know what will happen, I don’t want to get too excited to then possibly be let down. I’ve always been one to live life with vigor and I love to do many things, so this isn’t the way I intend to stay, but it’s the best coping mechanism I have for right now. I believe as my body gets stronger slowly from surgery and I heal more and more each day, I will again have the enthusiasm I’ve always had and continue my future adventures in life.

Sharing my brief story helps me get through this time and hopefully can be helpful in some ways to my fellow CF family and friends as well. Stay well. –Ella Balasa (ebalasa@usacfa.org)

4 thoughts on “When Cystic Fibrosis is Out of Our Control”

  1. Hi Ellen,
    Congrats on getting thru your chaotic time with the pneumothorax, for recognizing & dealing with its stress. This happened to me many years ago, and precipitated a stressful period of life.
    My 1st pneumothorax occurred on Fri evening, on a school bus while I coughed during the ride home from a forensic meet (I competed in girls’ extemporaneous category). I felt something but didn’t know what … didn’t think much about it.
    Such a busy weekend followed: I had to finish my senior research paper, and my football team, the Steelers, were playing in the super bowl. All weekend the nagging pain in my back continued; I mentioned it to Mom but otherwise ignored it. But on Monday I took my paper to school, dropped it off, then called Mom to take me to the hospital … an x-ray showed my right lung was 60% collapsed, so they placed a chest tube that afternoon. This was my 1st hospitalization for CF, which had killed my older sister, about 3 months earlier. I spent 37 days in hospital, my longest stretch ever.
    I missed an entire grading period at school, so then I was busy with schoolwork … and I had to wear oxygen 16 hours/day, just enough time off to go to school. But I didn’t worry about a collapsed lung happening again.

    In September I started college for electrical engineering, with a full schedule … so I was very annoyed in mid-November while changing clothes to visit my grandmother, I stopped for a productive, save-time-later cough … and I felt the slight pop in my chest that told me I had another collapsed lung. My parents took me to the ER; my right lung had collapsed again, down only 10% since I hadn’t waited around for things to get worse. The docs were foolishly optimistic: they told me they’d admit me but delay placing a chest tube … “very likely it’s going to heal on its own.” They didn’t understand how strongly I coughed; I knew it would NOT heal on its own, I was scared of the d*mm chest tube and wanted the procedure done asap.

    My chest tube was placed a day or two later, as the rt. lung continued to deflate … this time they left the chest tube in place longer to make it seep … the irritation would help paste my lung’s outer membrane to the chest wall, and limit my chances of another pneumothorax.

    I asked many questions about the possibility of recurrence, and was discouraged by the answers. My decreased sister had had one pneumothorax many yrs earlier, but no repeats … I already felt her problems had transferred to me. I cried often.

    After my discharge, I became hypersensitive to any chest discomfort … I would panic and beg my Mom to drive me to the ER for chest x-rays … most times she would, despite misgivings but in agony at my distress. As months went by, and many chest x-rays, I began to believe collapsed lung didn’t need to be my ever-present fear. I walked outside in woods to lower stress, & I did receive counseling on doing biofeedback which still helps me today.

    During the second pneumothorax, my CF docs disagreed with my local doc about how to prevent another pneumothorax. Local docs thought letting the chest tube set up irritation was a good approach whereas the CF docs wanted to do a procedure under local anesthesia placing talcum powder in the intercostal space, to cause more irritation. My parents let me decide, and I wasn’t used to such significant decisions. Both approaches could prevent recurrence … but the CF docs were away from family and friends, the talcum powder can be painful … I trusted my local docs and let the chest tube set up irritation. Basically it was 2 methods to irritate the outer membrane of the lung and the chest wall so they’d adhere to each other (normal is the 2 membranes sliding over each other).

    All that was more than 35 yrs ago. One day at a time. Try to enjoy something each day, even if you’re sick. Work like it’s up to you, and pray like it’s up to God … all good maxims, and I had future opportunities to handle my health/life balance and lower stress. I spent 1+ year of my life as a hospital patient, despite many home IVs, before receiving a magnificent double-lung transplant in Oct 1994, 22+ years ago.

    I wish good fortune and wonderful health opportunities! God bless you!

    1. Hi Mary,
      Thank you so much for sharing your story with me! It’s very uplifting to hear from someone that has faced the same hardship I do and has conquered this and even harder obstacles, namely transplantation. I know that is in my future, and to hear from someone who’s overcome the odds for so many years gives me a lot of hope! Thank you 🙂

  2. I am touched by your stories. CF presents so many struggles and I wholeheartedly agree with the “one day at a time” approach, however, I too am a control freak and I want to know exactly how life is going to go and make all sorts of plans. But, those of us who have survived into adulthood know that our plans don’t always pan out due to the complications of this disease that are seriously out of control. I love Mary’s advice of “work like it’s up to you and pray like it’s up to God” and one add one more: Play every chance you get. I still try to do that when I feel up to it. I seriously enjoy my “good” days. Try to keep your chin up and know that there are so many others out there that know how you feel. You are not alone in this.

  3. Hey Sis,
    Nicely written article/blog. Glad you found the time to share, it helps you and will perhaps help others. We can all learn a little something from one another and find inspiration within the stories we share.
    I said it a million times and I will say it again. You are the STRONGEST person I know! Keep on fighting and I am here for you always!
    Love Brother!

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