Q&A: An Emotional Response To Cystic Fibrosis With Lana O’Hara

Published in

Coughy and Creon

7 min readOct 26, 2020

by Emma Boniface

Today, I chat with Lana who has been on a lifelong healing journey since losing her younger brother, Josh, to cystic fibrosis (CF) in 2013. This left Lana with feelings of profound loss, guilt and deep-rooted wounds.

Looking back, Lana feels her emotional stress started from the very second she herself was diagnosed with CF at 18 months old. It took years before the pieces of the puzzle started to fall into place.

Feeling stronger than ever, Lana is living happily and healthy by the Essex coast in England. She climbed England’s tallest mountain this year, Scaffel Pike in the Lake District and enjoys lifting weights to keep fit.

She regularly shares her insightful, candid experiences around cystic fibrosis, grief and complex trauma associated with chronic illness on instagram, follow her at_lanaohara_.

Q&A: Emotional Trauma, Cystic Fibrosis, Grief & Healing

Can you talk us through the beginning of your CF journey?

I think my trauma actually started before I was even diagnosed with CF. Like a lot of CFers who were diagnosed in the 80s it took a while to actually get a diagnosis.

From birth to 18 months I went without any medication including Creon which led me to be malnourished the whole time.

Do you feel like the early days had any impact on you developing emotional trauma?

Although I can’t remember what happened, I think subconsciously the trauma has carried through. I also caught pneumonia as a baby and almost died but I managed to pull through. Then Josh was born and diagnosed.

How was it growing up for you and Josh?

Josh had countless operations and scares and I didn’t really have many. I remember when I was around 7, Josh had half of his right lung removed. He was 5 years old and I remember to this day walking in to see him after that operation. Seeing all the tubes and drains was horrific.

When I became unwell or needed to go in for treatment, as sympathetic and supportive as my parents were, I felt I shouldn’t complain or my thoughts and feelings weren’t valid.

How do you think your parents coped?

As much as there was direct trauma to me — the impact those 2 diagnoses had on my parents was colossal and destroyed them there and then. We grew up in a very loving, supported home but I think underlying there was a lot of anger from all 4 of us about CF. Through therapy I have now come to understand it was fear masked as anger.

Do you feel that your parents recognised the emotional traumatic impact CF was having on them and you, at the time?

I don’t think they recognised it as the situation was so intense. It is only since Josh passing away that we have all had time to reflect on how life was for us. If they did recognise it at the time, we always just tried to pretend everything was okay but ultimately it wasn’t and that caused underlying frustrations and arguments.

Can we hear about Josh & his story?

In 2010 he was assessed for a double lung transplant and by 2011 age 21, functioning on a 13% lung function, after two failed calls, he received his third call which was the ‘call of life’ for those lungs.

Surgery lasted 15hrs. When he came out he was heavily sedated and on a ventilator. It was a tough recovery process but Josh breezed through it (all the work at the gym had paid off) and within 3 and a half weeks he was home!

“He had 9 months of amazing”

October 2012, he started to feel unwell and needed an operation for suspected acid reflux. Josh deteriorated through the op’ and he was rushed to an ITU Unit, where he was put into an induced coma for over 3 weeks — still attached to life support and a machine called ECMO. Eventually the Doctors came to the conclusion Josh was in ‘silent rejection’. This type of rejection cannot be detected on any tests.

We begged the transplant team to re-list Josh for a second lung transplant which they did. Waiting for the transplant was 66 days of hell for Josh — for all of us. He had one failed call and then the second call gave us the green light. He did survive the second transplant operation which they didn’t think he would, but 10 days later, he passed away because of brain damage.

How did you cope with everything that was going on?

So, I turned to drink, drugs, partying — whatever I could do to escape the reality of what was our life. As a family, the 4 of us, tried to be a normal family in an abnormal situation and that fucked us all up.

Did you realise you was acting out in response to holding emotional trauma?

No but I now know for a fact that I carry my Mums trauma from her upbringing. My Dads trauma from his upbringing. The trauma of Josh from everything he endured. My own trauma from seeing everyone around me suffer with their demons and having to cope with my own mortality.

When did you finally step into therapy and what was your “breaking point”?

I turned to therapy 2 and a half years after Josh had passed away. I was destroying myself and trying to numb the pain with my vices. In Jan 2019, I was diagnosed with Pure O (a form of OCD — intrusive thoughts). This was a direct impact from the trauma of losing my brother.

You have become a strong advocate for CF and share a very candid account of grief on social media, do you feel that is your way of honouring the memories of Josh and what you have all been through as a family?

Grief has broken me, and I will carry that forever. I decided to share my experience of CF & loss because I used to feel so alone and if my experiences/journey of life resonate with one person to help them feel less alone, then that is all I can hope for.

The Light At The End Of The Story

You made it to thirty — did anything change for you reaching that CF milestone?

A lot of people with CF grow up thinking they will never reach their 30th birthday — as did I.

Hitting the big 3–0 ‘should’ have been the most amazing celebration of life but for me it was so tainted with the guilt that my brother Josh wasn’t here to celebrate life.

It was actually a very difficult time for me and my family as it was a bittersweet moment.

Can you, in one sentence, give a message to anybody who is living with a chronic physical or, mental illness?

“No matter how shit you might feel, you will get through it. You are strong, courageous and a warrior”

Kaftrio. I know you started it in September. What does this mean for you?

Wow, what a question. Kaftrio means life. It means a future. It means hope. It means less bloody PICC lines!! It means I am here for the ride, and I am deserving of a life unlimited.

If you could recommend 1 Author, Book, Podcast — who would it be?

Florence Given — Women Don’t Owe You pretty

Reflecting over your lifelong journey, how do you feel today?

Through all of that — somehow, I am still here.

I ask: “Why me?”
But really the question is: “Why not me?”

I am deserving of being alive and loved. I have worked my arse off through therapy to get myself to a place of stability. And I am super proud of myself that even through my darkest days I have managed to pick myself up and carry on.

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