Cystic Fibrosis: A Survival Guide For Mycobacterium Abscessus

Back in the 90’s it was the outbreak of Burkholderia Cepacia that nobody wanted to catch. Now it was Mycobacterium Abscessus and, I had it. It was the ultimate CF nemesis. These infections scare us so much because they make treatments options very limited as they are massively resistant to most antibiotics but that doesn’t mean it isn’t treatable.

How it started

December 2013: I remember clearly that moment when I was told I had M.Abscessus and that we needed to start treatment immediately. I felt small as I sat in front of my consultant, listening to her explain what was going to happen. Her voice became a quiet echo in the distance as my heart sunk and I desperately tried to hold back the tears building a wall behind my eyes. This is not what I wanted to hear. At that very moment I thought this would be my downfall.

M.Abcuessus can be picked up in a clinical hospital setting or the environment but it’s hard to determine where it was caught. My health had been taking a turn for the worst and after 3 positive NTM sputum cultures, treatment was started in November 2012.

The Symptoms:

• Nightsweats: this was the biggest indicator that something was different from my normal CF infections. Some nights I would change my sheets 3–4 times or sleep on towels.
• Lathargy: different type of CF tired, it was like having the flu. My body felt heavy and I was chronically tired no matter how much I slept.
• Increased chest tightness/irritation: my chest felt sore like I had a virus rather than just normal CF tightness.
• Big drop in lung function: despite doing treatment and having IVs my lung function wasn’t staying stable.
• 3 positive NTM sputum cultures: most CF clinics ensure you grow 3 positive sputum cultures before starting treatment as sometimes NTM can be grown randomly but not require treatment.

What 18 Months Of Treatment Looked Like

In the last decade there has been a big rise within the CF community but treatment methods for it were still relatively new with no guarantee it will completely eradicate the infection.

From the beginning, I needed to take a step back and listen to my body. This meant giving up stuff in the short term so that I could benefit in the long term — mainly work and less boozy nights out with friends. I rested a LOT. My body needed sleep, it may have been the infection, the antibiotics, the anti-sickness and antihistamines but whatever it was, I felt tired most of the time.

So, initially I was treated with 4 different antibiotics in hospital for 3 weeks (these were changed frequently due to reactions until we found a regime that was tolerated) and then I continued oral and nebulised antibiotic therapy at home for a further 18 months with IV antibiotics every 3 months or when I felt extremely poorly.

The Antibiotics:

• Tigecycline IV (changed to Cefoxitin IV due to adverse reactions)
• Meropenem IV (changed to Imipenem IV due to adverse reactions)
• Amikacin IV and nebs (changed to Meropenem nebs due to hearing loss)
• Clarithromycin (chanaged to Minocycline due to adverse reactions)

Azthromycin Antibiotic

Before culturing M.Absceasus I was taking long term Azthromycin 3x weekly to dampen down inflammation in the lungs. This is a common CF treatment method but it is very controversial and some evidence indicates it can encourage the Mycobacterium infections due to increased antibiotic resistance. It is common practice for Azthronycin to be stopped if you culture NTM and need treatment, speak to your team about this if it hasn’t already been done.

CT Scans

At the start of treatment I had a CT scan which helped to confirm M.Abscessus and identify which area of the lungs it had effected most. It has a very distinct pattern and shows up differently from other CF infections.

I remember the scariest thing on this treatment journey that felt so alien to all my others was getting to grips with the sheer amount of treatment but it does become the “norm” over time. I would be lying if I said it wasn’t hard, at times it felt impossible.

The first 2 weeks of treatment was the worst but it did ease up.

Your Journey Ahead

If you have just been diagnosed with M.Abscessus, I know hearing this can feel like you have been put forward for a fight you’re not willing to participate in or, that its sneaked up on you and you’ve taking a blow from behind when you wasn’t prepared but, I promise you — you have got this.

One of the biggest things that got me through this journey was looking after my mental health not just my physical health. Easier said than done, I know. I spent a lot of sessions working with my trusted psychologist and reading books recommended throughout the NTM journey, we worked on lots of coping strategies for when times were tough (I’ve listed a great book below).

Book Recommendation: The Happiness Trap by Russ Harris based on Acceptance and Commitment Therapy.

Great for giving you better coping strategies when living with thins that aren’t always changeable.

6 Top Tips To Help Along The Way

• Probiotics, probiotics, probiotics. Lots of them! Your gut is about to take one big hit, bye bye good bacteria. If I could hand out one piece of advice this would be it! Make sure you support your gut health, it will help to avoid really crappy GI issues further down the line. I used Symprove and Lepicol Plus as recommended by a CF Gastroenterology Doctor.
• Anti-fungal treatment. Ladies and Gents…we’ve all had that annoying itch when taking antibiotics. During this regime the regular treatments like Fluconazole and Clotrimazole (Canasten) didn’t cut it. I needed other weekly anti-fungal medications too. Just remember if you take CF Modulators such as Kalydeco, Orkambi, Symkevi or Trikafta most oral antifungals need special precautions. Speak to your CF team not your GP!
• Speak to your team psychotherapist. This was my hardest CF journey yet, it tested me just as much mentally as physically. Reach out. If you don’t feel comfortable with seeing your team psychologist then reach out to anybody within your team or just reach out to other CF people online who can identify with what you are going through. I wouldn’t have survived this without all the coping mechanisms I worked on with my therapist. The most valuable part of my CF care to date.
• Exercise will keep those lungs and your sanity in tact. I had a difficult relationship with exercise but I really felt I needed it. Even managing some gentle yoga or a walk with the dog helped. Start slow, something is better than nothing.
• Don’t miss treatment especially antibiotics… but don’t beat yourself up if you do. The hardest thing about treating M.Abscessus is the fact that it is so resistant to antibiotics and rapidly grows resistance towards the ones that do work. This makes it a no brainer that missing antibiotics can increase the chances of them not working so try and keep on top of it best you can but remember, you are only human.
• Take it one day at a time. Be gentle on yourself. Try to stay in the present moment and don’t get caught up thinking about months ahead — it will only make you more exhausted than you already are. If you are racing ahead with a spiral of worrisome thoughts, this would be a great time to try some mindfulness practice (headspace.com is a good place to start).

What I Took Away From Mycobacterium Abscessus

This may sound like a silly one but I didn’t just lose from this, I gained too. I added another layer or, several, to my armour which is built from great resilience. I pushed my perseverance further than I knew possible. I moulded my treatment regime perfectly, I attained a profound appreciation for my well being and my body through yoga and mindfulness practice. The energy I put into surviving created growth which came from the most fragile of places within me — I discovered that I am strong in my weakest of moments.

Mycobacterium Abscessus was not my downfall, it was my rising.