So, let’s pick up where we left off. It’s now 2019 and my sister has been living with CF for just under a year. The hardest and most testing year of her life. She was just starting to get to grips with the disease and we were all starting to understand our new reality as it was. Unfortunately, the unwarranted feeling of routine and some sort of new normality was short lived.
A new infection was found in my sister’s lungs; NTM abscessus. People with cystic fibrosis are vulnerable to many lung infections, which are mainly just picked up from the environment, or sometimes by coming into contact with other people with the condition (called cross-infection). While these infections are usually harmless to people who don't have CF, they can settle in the lungs and cause permanent lung damage for those who do. NTM abscessus is one example of a bug like this. It is also very resistant to antibiotics and needs very strong, toxic treatment.
In October 2019, Abi was admitted to Lewisham Hospital to start NTM abscessus treatment. She needed a PICC line put into her arm in order to feed intravenous antibiotics via a drip into her bloodstream. Within a couple of days of the treatment starting she ended up with pancreatitis as a side effect to one of the drugs included in the drip - there were 3 strong antibiotic drugs being fed into her blood system at once, along with tablet versions too. As mentioned, this infection demands very strong treatment.
As you can imagine, she was in agony constantly. She couldn’t eat, was throwing up regularly, and became very weak. The hospital put her on morphine to try and numb the pain of the pancreatitis but for my sister, this didn’t work. The pancreatitis itself would take a good few weeks to fade, and because of this extreme reaction, the doctors had to change the combination of drugs included in the intravenous drip; meaning treatment would last longer than originally planned.
I was able to visit my sister in hospital and it was one of the hardest but most important things I've ever had to do. I wanted to be there with her throughout all of this, to hold her hand and support her while she was suffering. I am a strong person and I like to think I can handle a fair bit of life's games, but this was something I couldn’t be prepared for. Walking into that hospital room for the first time I was shocked at how ill my sister looked. Pale, thin, and tired. I could feel myself wanting to cry but I kept it all in and gave her a big cuddle. At that moment, I never wanted to let her go.
I sat with her for the day, eating hospital sandwiches, playing card games and watching friends on my sister’s laptop (our go to thing to watch together since we were children!) We laughed and giggled and of course spoke about her condition and what was going on. I couldn't believe the amount of drugs she was on and all the side effects she was dealing with. I had no idea that this disease would come hand in hand with all these other health problems, I was taken aback by it all to be honest.
Leaving the hospital at the end of the day was a very surreal moment. Part of me was aching to not be there witnessing all of this, but at the same time I didn’t want to leave. I suppose I was trying to process everything I had just learnt and witnessed in such a short space of time and feeling completely in the clouds and lost. As I said my goodbye and left her hospital room, the tears came flooding out. I cried all the way to the train station, I cried in the bar of the hotel I was staying in that night, and I cried myself to sleep that night. There was no limit to my tears that evening.
Those 4 weeks my sister spent in hospital were so huge in terms of her story and also why I am here now writing this. I want to mention some crucial positives that came out of that experience. Firstly; my sister’s strength. She took on that treatment like a true hero. She knew she was going through it all for the right reasons and she was not afraid to tell the hospital staff and doctors when she needed more help or when something wasn’t right. I admire her so much for how she handled all of that and how she continues to handle her situation. She is an inspiration.
Secondly; the doctors, nurses and everyone I came in contact with at that hospital. They were amazing. They were doing all they possibly could to make her comfortable yet also making sure they were treating the infection and disease with the utmost care and professionalism. I have a lot of admiration for those doctors and nurses who spent the time looking after my sister. I will forever be grateful.
Once she was home she had to continue treating herself with the intravenous antibiotics for another 2 months, managing the PICC line herself, giving herself a drip twice a day, and trying to eat as much as she possibly could to make sure she put back on all the weight she had lost. She then had to inhale antibiotics through a nebuliser and take tablets for another 9 months, and as a result of this aggressive treatment, the infection was finally beaten. But unfortunately, due to the pancreatitis she had suffered with during her time in hospital, her pancreas is now damaged permanently. She now has to take artificial enzymes every time she eats to make sure her body is absorbing all the nutrients she needs. Another battle she must continue to fight.
It is extremely difficult for me to put into words what this whole experience was like for us all. You can imagine the worry and sadness we all felt around her, the concerns for her health and her future, putting all your faith and confidence in the doctors and nurses treating her. It was a very hard time for us all. The science behind all of this is what kept us going, kept our positivity alive and allowed for us to continue fighting as a family to get through this. So this is, of course, a huge reason why I am taking on this triathlon and why I am so determined to make my sister as proud as she has done me.
Proudest sister ever over here! :)
Please donate anything you can to this worthy cause and help me support the amazing research that goes into fighting this disease. Thank you!
"No bug is a good bug when you have CF, but NTM abscessus really is one of the hardest to treat. The drugs are very toxic, not many people can complete the course because of the side effects, and it often doesn’t work. But there is hope, as new treatments and drugs are being looked at right now.
As I’m sure you can see from this blog, my sister is my rock! The day she describes is so vivid in my mind too, and so important to me. I felt happy when she was with me! She is an amazing person and deserves all the support anyone can give. She can rest assured I am as proud of her as she is of me"
- My beautiful sister - Abi Howse
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