How did we get here? [2020-2021]

I write this at the end of January and early February 2021, following a few months of stark realisations and a new normal to cope with. I want to reflect on the last 5 months of life, to share a journey not many realise I have been on. We’ve had to accept a lot of progression and decline in recent months, new issues to deal with and rapid worsening of other complications. I will reflect on what’s happened, and how we’ve tried to cope with this. 

COVID-19 has been an interesting experience for us all, one we’d rather never have had, and one we’re trying desperately to cope with, live through and come out the other side. The world has faced on of its biggest crises, and so many people are struggling to find their way through. COVID-19 for me has meant shielding, for which I continue to shield as someone who is clinically extremely vulnerable (CEV), and the complete withdrawal from the outside world. My work has moved online, which, at first felt like a bereavement as I love going to events, seeing people, those rich and life-changing discussions had before, at break times and after meetings and events and allowing Molly to pursue her first love (her job – and, of course, greeting her adoring public). However as the months went on, work all being virtual became a blessing in disguise, as my health began to rapidly and seriously decline. I’ve been out four times since March 12th 2020 and all four have been essential and unavoidable medical trips. 

I’ll reflect back on the past 5-6 months, to help people understand how we got to where we are. 

September 2020 rolled around and I just didn’t feel right. Intermittent fevers, worsening fatigue and muscle weakness, breathlessness that was more noticeable, struggling to keep up at work, and generally feeling unwell. I had urine (kidney) infections on and off — not unusual for me, though. On 21st September I came down with a bad chest infection — fortunately we were able to rule out COVID-19 — that left me needing hourly nebulisers, assisted coughs with my lung volume recruitment device and improvised chest physio, with severe breathlessness, high fever, low saturations and a lot of thick gunk on my chest that I couldn’t cough off as it was so thick (and I already have a weakened cough due to my progressive muscle weakness) so my chest rattled and wheezed constantly. I was extremely sleepy, but struggling to sleep due to the coughing and breathlessness. It was a horrendous 10 days with my chest, but, eventually, I did recover – just not to how I was pre-chest infection. My chest was weaker, my breathlessness worse than usual, and my need for nebulisers had generally increased. 

October and November I suffered yet more urine infections (which affect my kidneys due to my Ileal Conduit), a bowel obstruction/pseudo-obstruction which fortunately righted itself after about 5 days, another (fortunately mild) chest infection and what appeared to be episodes of pancreatitis – extremely dark urine (looked like Irn Bru), unbearable itching (that had me scratching my skin off), severe upper abdominal pain that radiated to my back, slightly yellow skin (sallow coloured) and dull whites of my eyes, very pale, foul smelling Ileostomy output and fevers. This meant even more courses of IV antibiotics to treat all of these episodes and infections, on top of the September IV antibiotics I’d had for urine infections and the chest infection. I had to keep taking time off work every time I was ill. I knew something wasn’t right, I knew I was deteriorating, but I kind of just felt it was a run of bad luck and it’d be over soon. 

December came and yet more kidney infections. Then I went to Bart’s to have an ultrasound to see if I had gallstones and whether one was lodged in my bile duct. I was developing another urine infection and my throat had broken down and ulcerated again, my temperature was going up and I had a near-constant fever, which I was brewing before I went to hospital to get the ultrasound. I was started on IV antibiotics to treat that infection. However 5 days after I went to Bart’s Hospital, I started to develop a chest infection. I had a dry cough, breathlessness, my fever continued to rise and I’d lost my sense of smell and taste. I rang the doctor to ask for another course of IV antibiotics to treat this new infection, and he would only prescribe the IV antibiotics I needed provided I did a COVID test. I agreed. I took the test on Monday 21st December and on Christmas Eve it came back positive. My chest was horrendous, I was needing hourly nebulisers, severe breathlessness, low oxygen sats (down to 80s), my face was grey and lips at times went blue-grey, and I couldn’t cough up any of the phlegm off my chest as it was so thick it wasn’t moving. It was not good at all and I know I really should’ve gone to hospital, but due to the amount of things we can do at home, the only reason I would escalate to hospital would be if I needed intensive care. So we managed at home. Mum sadly caught COVID from me but fortunately none of my staff did. I was surprised to survive COVID – as were my team, when I told them afterwards they said I was lucky to make it through – but I truly believe the fact I was already on IV antibiotics and was able to get more IV antibiotics, the fact I could do regular nebulisers, the fact we could hydrate me with IV fluids and give IV Paracetamol, the fact I could use my lung volume recruitment device, all contributed to me managing to manage at home. 

My chest started to clear with COVID but it was clear my kidneys were not even nearly free of infection. So yet another course of IV antibiotics was prescribed. 

January started with yet more infections in my kidneys and chest, thus more IV antibiotics. We once again changed the antibiotic as the urine culture showed that I wasn’t on the right one for the (then) current urine infection. I was able to return to some work for about 10 days in January, but I was struggling immensely and managed to record one video and give one speech, but it wasn’t pretty with my breathing being poor (breathlessness). It was clear my condition was changing and I wasn’t responding to treatment properly. Whilst antibiotics were getting me over the ‘hump’ of the worst of the infection, and saving my life, they weren’t getting me better. And every time an infection hit, and was treated, I never returned to the baseline I was at before that exacerbation/infection. My condition was trending downwards. My teams didn’t know what to do. My TPN/nutrition gastroenterologist was handling things but this is way beyond his remit. My GP was prescribing but made it clear we can’t keep prescribing high dose IV antibiotics. I phoned the young adult hospice at home service I’ve been under for a decade, and was told they couldn’t help in this instance. Fortunately, a colleague of mine, P, stepped in and started helping us, and I was referred to the adult palliative care team. However, I was still deteriorating, no one knew what to do, and I still couldn’t work. 

The last day I was able to work was 19th January. I developed yet another infection and this one was even worse. It left me delirious, in and out of sleep and not at all with it for 5 days, dark smelly urine, full of sediment, extremely high fever, all over body aches/pain, headache, light sensitivity, severe nausea and vomiting (despite IV antiemetics and my PEG being on 24/7 free drainage as it always is), really stiff joints and neck, and in a very bad way. At one point, we didn’t think I was going to survive. The community palliative care nurse came round and took bloods which showed a CRP of 162, mild anaemia and high liver function tests, but as usual my white cells never moved (they never do). After 5 days I ‘woke up’ but it was clear I had gone downhill even further. I didn’t really recover, I only got over the worst of it, and I still haven’t recovered. The minute the IV antibiotics finish, downhill I go. So more IV antibiotics are being prescribed. Again and again. GP isn’t happy, but what else can we do? We have been getting nowhere and I haven’t recovered to any kind of baseline. IV Paracetamol isn’t really controlling my fevers anymore and the antibiotics aren’t controlling the infections. My PEG site also keeps getting nasty abscesses that pop and are horrendous, which also break the skin down at times.

So here we are. We want to try and organise an MDT with my professionals (virtual). I need to liaise with my community palliative care nurse to see if she can help. I just hope we can get somewhere. 

If we can’t find a way forward, then I won’t live very long. I am pinning my hopes on there being something we can do. However, we’re having to have “difficult” conversations. I am very keen to update my Advance Care Plan. I need to get everything in order. And I have to try and find a way forward medically. I have a fantastic team but I need to pull them together. I’ll keep you all posted. 

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