Susannah’s story…
People will mostly see me smile…
“The 18th of May 2018 is a date forever etched in my mind, as it was the day I had my enteral feeding tube placed.”
I am 58 and live in West London with my husband, Julian, and our little dog, Anna-Bell, a trained medical assistance dog who goes everywhere with me. Sadly, in 2017 I retired from my career as a secondary school music teacher because of ill health. I still miss both teaching and performing a great deal.
I have a severe lung disease which, among other things, makes it very difficult for me to maintain my weight. For 13 years, I was prescribed various oral nutritional supplements. By 2017, however, my weight loss had become critical, and after multiple tests, a lengthy hospital admission, and a second-opinion referral to St Mark’s, where I was diagnosed with disease-related malnutrition and malabsorption, my gastroenterologist decided in 2018 that a PEG was the best option. It felt like a last resort to me, but I desperately needed more calories than I could ever manage through copious Scandishakes and Ensures.
Once I was home, Julian, who is also my carer, immediately and brilliantly took on this new role. He looked after everything connected with my new G-tube: phoning Abbott to order feed supplies, keeping an eye on bottle stock, and carrying the boxes upstairs to our spare room when they arrived.
In those early months, I had a lovely community dietitian who went above and beyond to care for me while I was incredibly frail and extremely underweight. One of the things she told me about was PINNT, and I was very happy to become a member of this wonderful group.
After my first year with a PEG tube, my surgeon suggested changing it to a MIC-KEY button. This meant that Julian and I could be trained to change it ourselves, reducing the need for so many visits from the Abbott nurses. As I am extremely immunocompromised, it was wonderful to feel self-sufficient, especially when COVID-19 arrived and we were shielding. At that time, I also had a new dietitian who, thankfully, kept in touch with me by phone.
It has not all been plain sailing, though. I would not be honest if I said that having a PEG tube or, in my case, a MIC-KEY button has been easy.
The community dietitians in my borough do not allow patients to receive more than one month’s prescription at a time, so I am often close to running out at the end of each month and have no buffer stock. Occasionally, there are shortages of my feed or delays in supply. It is stressful, and this is what people do not see. At times like these, I feel like a professional patient, constantly having to advocate for myself, and I am sure I am not the only one. At least Abbott’s online hold music is a Mozart piano sonata, which I rather enjoy listening to.
Last year, with my dietitian’s guidance, I began learning how to use blended food. I have enjoyed making all sorts of sloppy concoctions that my digestion can just about handle! In truth, though, my stomach and digestion are happiest with my ready-to-hang enteral feed (Vital 1.5 kcal), a little Greek yoghurt, soups, Ensure Plus, and basic fluids made up using Dioralyte and Sando-K. Even then, there have still been supply issues.
So, what do I do with my time when I have to stay in so much? Well, I nap a lot. That is simply the nature of my illness. Our 16-year-old Chihuahua does much the same! I also enjoy reading modern crime novels and thrillers. I am addicted to
Frasier and seldom miss an episode of
The Chase. I love watching Arsenal, and of course, hospital appointments keep me busy too.
Each afternoon, we go out for a short local drive and a little dog walk. Other than that, because I am immunodeficient, I cannot really mix with people. It means I ‘see’ my family and friends via FaceTime rather than around the Christmas dinner table. So although food-related situations would be difficult for me, I do not really have to face them because my immunologist still advises me to stay at home. If we do ever pop into Waitrose for a couple of items, it is face masks and antibac wipes for us.
In the past year, we have been rebuilding and modernising an old house nearby. It will be ready for us to move into at the end of the summer and will have a purpose-built medical room with cupboards for all my medical equipment, nebulisers, oxygen concentrator, and all those enteral feed boxes. So the new house will be totally free of medical clutter. Wonderful!
People will mostly see me smile – I manage what they do not see very well. My conditions, treatments, and everything that comes with them are now part of life. What could be better supported, though, is the supply chain for essential products. Communication is important, as delays and shortages are all part of my daily life
I love being a member of PINNT. For someone who is stuck inside so much the online activity is perfect for me. As an educator, I love learning about other people’s HAN journeys and challenges through their questions and experiences, and occasionally I ask my own. It really is a fantastic organisation.