Mandy's personal stories

Mandy Kloppers

Day 1 Cystic Fibrosis and Mycobacterium Abscessus

I’ve been in two minds regarding blogging about my latest health issues. I decided it might be useful to someone else and I know I struggled to find personal accounts when I first googled Cystic Fibrosis and Mycobacterium Abscessus.

I flew to Phuket, in Thailand 6 months ago and looking back, I think this holiday was jinxed. (The photo of me was taken in London, at the airport before leaving for Phuket). I came home to the UK after one week in Phuket with a cold. I managed to get over this mostly but got another chest infection straight afterwards and this happened a third time. The third chest infection, 3 months after Phuket, left me dehydrated, with no appetite and short of breath. I was admitted to hospital for intravenous (IV) medication. All pretty standard so far.

I was told when in hospital that I had picked up an “unknown bug” and we were waiting for test results. I was told that if I had the worst bacteria (very hard to get rid of), I would need 3-4 weeks of IV’s, followed by a year of oral antibiotics and strenuous physio on my lungs. I was also told that I wouldn’t be allowed back onto the Cystic Fibrosis ward if I had this bug for at least a year (Mycobacterium Abscessus) due to possibly infecting other patients with Cystic Fibrosis.

Turns out, I did have Mycobacterium Abscessus and after two weeks of IV treatments in hospital, I was promptly sent home.

One month later, I am back in hospital, on a different ward and have up to thirty days ahead of me. It is hard to stay mentally strong at times. The cocktail of drugs make me feel nauseous regularly and my lung function (how good and healthy my lungs are) has dropped by 20%. Some staff are rude and treat you like an object. Staff come in and ask you all sorts of personal questions and don’t even introduce themselves or tell you who they are or why they are asking you questions. It may seem a small thing but when you are in hospital, things get magnified. You feel very alone and anxious at times.

Today hasn’t been a good day. Most of the IV’s make me feel ill. As a result, I can’t face eating. I miss the usual staff that I know on the Cystic Fibrosis ward. Some staff clearly have no idea about mental health. They talk to you with doom and gloom and can be relatively insensitive at times.

I feel all medical staff should be trained on how to deal with people experiencing illness, not just Cystic Fibrosis. Staying mentally strong is half the battle, it’s immensely important for a full recovery. I had ten very dark days after finding out that this multi-resistant bug was partying it up in my lungs. My mother had Cystic Fibrosis and passed away at the age of 50. I had my 48th birthday three days ago and I can’t help comparing my progress with my Mother’s. Probably not helpful but the thoughts arrive uninvited.

Being a mental health professional doesn’t mean that I don’t get down and feel overwhelmed at times. The unhelpful thoughts don’t bring me down the way that they used to but we’re all human and all dealing with stuff. I’m trying to give myself a break and tell myself this is a temporary blip and soon I will be back, doing my work and seeing friends, stronger and healthier than ever.

I don’t know what the future holds, I may never be able to eradicate the Mycobacterium Abscessus from my lungs. It’s not a problem for healthy people but Mycobacterium Abscessus thrives in the lungs of people with Cystic Fibrosis and we are very susceptible to it. Over time it can cause permanent lung damage and cause deterioration of my lungs more rapidly. It seems it is on the rise and currently affects around 5-10% of the CF population worldwide. Mycobacterium Abscessus is found everywhere in soil and water and I probably picked it up from the hotel pool in Phuket. Yay.

I will keep you updated as to my progress. It seems a long long road ahead. One day at a time…

Mandy X

PS. For those of you with CF, I am on the following drugs: Amikacin, Tigecycline and Imipenem (IV’s) and oral Clarithromycin. Imipenem is the only one that isn’t making me feel nauseous.

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