Posted by: Summer Katz, M.A., LMHC, CF Pharmacy Patient Advocate

At a certain point, some people with cystic fibrosis are introduced to the possibility of considering lung transplantation through a discussion with their physician. This is generally mentioned because the progression of lung disease and pulmonary function is approaching a certain threshold, which makes the maintenance of one’s previously defined health status or lung function difficult without the alternate intervention of an organ transplant.

Unfortunately, we know all too well that the diagnosis of cystic fibrosis has no cure at this point. And, while there are many great medical advances down the pike which will offer prolonged, statistical life expectancy and many other benefits, the truth still lies in the fact that over time our health statuses change and organ function can decline.

When this happens, it seems like we are thrown to the wolves asking, “Is this it?” or, “What do I expect next?” As the title of this blog dictates, the question as to whether to have a transplant ultimately lies with you. No one else can really answer or conclude whether to pursue this option because this is your life and you, ultimately, get to live it. I chose to take the transplantation route, but that was solely my personal decision.

There are people who struggle for many years with the symptoms of cystic fibrosis and ultimately learn to deal with the struggle within a certain comfort zone simply because ‘that is what they know.’ When we choose to stay in a routine of familiarity, we may also be experiencing hesitation due to anxiety and/or depression.

However, if you then decide to have the transplant, prior anxiety and/or depression could possibly continue due to then not knowing what to expect or how to handle it. All this is just one component of what makes this such a personal choice.

While making your decision, you also may have questions and concerns related to the emotional well-being of your loved ones and caregivers. You might even be incorporating these connections into what you choose, based in part on how it impacts others.

This is the part where perhaps you should take into account that there’s so much of your life experience that is completely out of your control – and that is true whether you have a transplant or not. Additionally, the things which become important to take responsibility for need to revolve around your continued efforts to maintain your optimal health (physical, mental and emotional). Taking on the over-analyzed fear of how others will cope does not benefit you or your needs at this fragile time.

With that, there are probably many more questions about having a transplant than not, which should be explored in depth with your health team before reaching a decision. And sure, there is a vast amount of statistics available on potential outcomes, percentages, etc. Much of this information can be important and beneficial toward one’s exploration and potential choice of having a transplant.

However, I would encourage you not to rely solely on the stats, primarily because they highlight the black and white averages. The way I looked at it was that this information will never define me as an individual, nor my individualized and unique experience in life.

To be honest, so much about the transplantation process is scary; including, but not limited to the evaluation period, the waiting game, the heightened fear of uncertainty upon getting the call, and then there is the potential for adverse reactions or complications – and even the chance of rejection. So, that is where we are left to practice our own versions of coping, using the skills that we acquire over a lifetime that teach us how to get through the tough times.

We may ‘keep busy’ with the day to day distractions, or choose to reach out for extra support from family and friends so that we know that we do not have to go through this alone. The point is, however we participate in coping, we must ask ourselves whether our efforts are helping or hurting our ability to ‘get through it.’ If you determine that your particular coping style is actually not benefitting you (or the ideal image of you), I would like to encourage you to reach out to a professional who can offer you additional guidance and/or support.

I have created a table below to outline healthy and unhealthy examples of coping styles, which certainly apply whether having a transplant or not. My hope for you is that you start to or continue to practice the healthier versions of coping as soon as possible, because when you do — you will certainly feel more empowered in your decision(s) and ultimately be able to participate in your life with a smile on your face!

Coping Styles and Examples:

HEALTHY

The best form of communication is “assertiveness:”
• Asking for what you want and need in a calm, clear and direct fashion
• Making “requests” for support (ask for help)

Consider the song “Say” by John Mayer.

UNHEALTHY

Passive, aggressive or passive-aggressive communication is not the best way to try to communicate what you want.

Examples include:
• Not asking for help
• Yelling, demanding, blaming or name-calling
• Making assumptions or expressing subtle desires while having expectations of others

HEALTHY

• Using music, art, exercise, sports and play as a cathartic release activity
• Participating in mental relaxation
•Allowing time to process emotions through expressive creativity, learning and practicing options to “let it go” and find acceptance, joy and peace

UNHEALTHY

Isolating, avoiding or withdrawing from others (or from previously enjoyable experiences):

• Rejecting invitations to join others
• Hesitating to reach out to others for companionship
• Dwelling on negative thoughts or feelings (fears, uncertainties, sadness, or anger) without engaging in healthy outlets of personal or interpersonal efforts to “let it go”

HEALTHY

Engaging in enjoyable activities and events for positive ‘distraction coping’ options IN MODERATION:

• TV, video games, reading books, etc.
• Cooking, baking
• Travel / day trips
• Singing, dancing
• Joining community theater
• Taking up a special hobby
• Scrapbooking
• Painting, drawing
• Photography
• Going back to school
• Volunteering
• Engaging with pets
• Gardening
• Writing
• Praying
• Meditating

UNHEALTHY

Participating in rebellious or acting-out behaviors:

• Not doing breathing treatments, skipping CPT regimen, not taking medications and avoiding medical intervention regimen
• Engaging in dangerous habits; smoking cigarettes, doing illicit drugs, etc.
• Promiscuity
• Belittling others to falsely build up oneself
•Reckless behavior such as fighting, speeding, over-exercising, overeating, overspending, excessive gambling, etc.
• Self-mutilation, self-injurious behaviors

HEALTHY

Creating a structured daily routine for sleeping, eating and exercise:

• Getting the recommended 6-8 hours of sleep per night
• Follow the specific nutritional diet for your individualized needs (i.e., some CF patients require high calorie diets), WITH acknowledgement of balance; adhering to healthy nutritional requirements.
• Participating in physical activity that helps maintain a healthy body (ex. bones, muscles, healthy heart and lung function, etc.)

UNHEALTHY

Oversleeping or Undersleeping:

• Engaging in an unstructured sleep routine (ex. taking too many daytime naps)
• Not addressing insomnia symptoms or issues

Bypassing nutritional recommendations:

• Overconsumption of junk food
• Underconsumption of healthy food

Leading a sedentary lifestyle:

• Avoiding physical activity can lead to additional concerns (ex. brittle bones, weak muscles, potential for blood clots, etc.)

Summer Katz, M.A., LMHC
Licensed Mental Health Counselor

*Disclaimer: This blog is provided for informational purposes only (including brief topic exploration or reflection) and should not be used as a substitute for professional mental health or medical treatment. The opinions expressed by the blog author do not necessarily reflect the views and opinions of Cystic Fibrosis & Freedom Pharmacies, nor HHCS Health Group of Cos.