Three Little Magic Pills And I…and UK CF Care
– by Sarah Leigh Milczanowski
HOW IT ALL BEGAN
It was back in October 2019 when I was given the incredible news I was eligible to try the then-named Trikafta, at the time I was in second stage respiratory failure using cpap and oxygen and very weak and exhausted. I used to spend the day in my pajamas and not have energy to see my friends or do anything I liked.
Firstly I had terrible side effects constantly feeling sick and dull headed, abdominal bloat and pain and dizziness, I had taken myself to accident and emergency several times because I was really feeling bad with it.The doctors insisted on me being patient and that this would wear off, and gradually as they said it would they wore off.
The first month was over and now I was beginning to cough less and not be constantly swarmed in sputum and feeling and being sick. I pretty much can see why some in the community call it ‘THE PURGE’.
WHERE WE ARE NOW
Fast forward to 2022 and a post covid lock down x2, I am feeling ok, although because of Covid getting out and about with still a certain degree of risk around and still using oxygen is tricky, but do-able.
My weight used to be around 50kg to 51kg with tube feed and calorie shakes. Now I seem to have settled around 62kg and need no supplements. I am, at the moment on my consultants instruction trying out a low fat and high fiber diet, this is both because I no longer struggle to maximize my calories per day, but can more comfortably reach this in a relaxed way and to improve my gut and stomach health by upping my fiber intake, so over all less fats and snacking and a lot more fruits, nuts.
Mentally and emotionally, I am also in a better place than I was and that to me is as important as the physical side. I have definitely seen a change in mood on the medication, but not in a significantly bad way so as such would not class it as feeling depressed or anxious, I would say I’m more aware of when, and why I feel a certain way and sometimes, I can get irritated at small things I would not usually have got irritated at previously.
CF CENTERS IN THE UNITED KINGDOM AND RESEARCH
Throughout the United Kingdom there are many regional pediatric and adult CF centers each with an incredible multi disciplinary team with caring Doctors, nurses and clinical support teams caring for those in the UK with CF
Each center has an array of services specifically designed to care for those with CF from cutting edge medicine, physiotherapist, clinical psychologist and social workers. The catering team to provide excellent nutrition suited to each patient’s individual needs.
Each unit has rooms segregated as always from other patients and with home comforts like a coffee machine, kettle, TV, dvd player, with dvds available to loan from the ward for a short time. They also have fans, air conditioning units, blackout curtains to provide a cooler room environment when it is a warm or hot day.
Centers usually run tasks and trials for research purposes along with the research nurses, this happens from time to time and this shows the ever-evolving and developing world of CF care, technology and new and developing life saving treatment.
There are several units in the North of England and several in the south.
WITH EVERY POSITIVE THERE IS A NEGATIVE
Within the CF community there is always sadness when virtually if we have become friends with another member of the community who unfortunately is not eligible for a medication that is not suitable for his or her mutation it’s very upsetting even when you know they need it badly.
Recently I experienced this with one of my longest CF friends. She sadly had very rare mutations and was not eligible for 3 trial medications. This impacted significantly on her mindset, her daughter and her family, and very sadly a year ago, she passed away.
THE FUTURE FOR THE CF COMMUNITY
I get really excited when I think of the future as there are many upcoming opportunities and trials occurring and I sincerely hope that every single person worldwide can live a full and happy life.
Social media and asking your team for the latest information on trials is best to keep you in the know. The latest CF conference has just taken place, so I’m guessing local /regional centres will be forming an update and letter, and it will be heading to a mail box either virtually or figuratively soon.
Also your Center’s research nurses will help you to understand new and developing treatments, although, they may not be able to disclose too much depending on which stage of trials it is at.
Let’s stay hopeful….let’s stay positive, we have got very good companies trying to create life saving and life unlimiting medication, they must go through the logistics of clinical trials and this yes, does take time but it’s to ensure safety and to check for reactions and side effects, this is important as lots of the CF community suffer from certain intolerance or allergies.
BETTER TO BE SAFE THAN SORRY
Now that lockdowns are lifted and we all learn to live with covid and get back to a new kind of normal, let’s not forget that there are other health issues to address.
Dentists, podiatry, cervical smear tests and breast cancer screenings to name but a few. It is as important to attend those as your Cystic Fibrosis appointments so if you have been putting them off then get booked in. Since January I’ve booked in for fillings at the dentist that have been delayed and also had my cervical smear test done.
The feeling of getting those ticked off the ‘To do list’ was pretty awesome.