I really don’t even know where to begin…
I haven’t published a blog post since 20th March as this was when Coronavirus really started to take hold and mentally, like many people, I was really struggling with what was going on and the implications it was having. However, since then, my health spiralled downhill and so my Mum and I have finally managed to put this post together.
A few days after my last blog post I started to show signs of infection with no indication of the source; I was spiking temperatures, lots of general pain and nausea and vomiting seemed worse than usual. I phoned the GP and over the phone a course of antibiotics was prescribed which, whilst I still didn’t feel right, settled my temperature and I felt better than I had. However, a few days after finishing them I was deteriorating again and my temperature was creeping back up. Another phone call to the GP, more blood tests, a urine test and me querying the possibility of it being my port or my stimulator, they still couldn’t get to the bottom of the source, but another course of antibiotics were prescribed with a similar outcome to the course before.
With the Covid situation, I was unable to leave the house even if the GP had offered me an appointment which they didn’t, and they wouldn’t do a home visit despite the fragility of my health which they are obviously aware of. Things still weren’t great; the following week the district nurses visited to routinely flush, take bloods from & heparinise my port, two days after which I woke up to worsened spikes in temperature, the area around my port being agonisingly painful, the scars rapidly changing, the area very hot/ tender to touch and my fears of a third incidence of line sepsis from a port-a-Cath looking ever more likely.
Another phone call to the GP, a third course of the same antibiotic was prescribed and the district nurses organised to come and review the site the following week. However, my condition was deteriorating so yet another pointless phone call to the GP, still no home visit would be put in place, and so 111 ended up having to send out a doctor as I was advised to avoid A&E at all costs with my lack of immunity and Covid still being rife. The doctor changed the antibiotics that I was on, and things actually improved quite significantly – my temperature settled and the port site itself looked much better than it had. I was obviously being too optimistic that I could stay out of hospital, as when we stopped the antibiotics things started to flare again. I managed to convince the GP to finally allow me to send off a swab of the discharge from the port site that had started again, and yet another course of antibiotics were prescribed. No home visit would be put in place and I felt utterly let down by the care (or lack of it) I’d received from the GP surgery over the previous five weeks. I totally understand restrictions in place and the impact Coronavirus was having on health services, but swabs should have been done earlier and I had to push for them to allow me to email them pictures of the site etc and to get what ‘support’ I had recieved.
Unfortunately, on 2nd May, I ended up being rushed back to A&E after deteriorating quite significantly, where they confirmed I was septic for the fourth time in a year, my port being confirmed as the source which they’d have to remove. Considering my severe immunosuppression and my conditions which can be better managed at home, the plan was for as quick as an admission as possible to stabilise me sufficiently, before being discharged home to district nurse care who would finish the course of IV antibiotics. However, writing this seven weeks after being admitted and I still lay in a hospital bed, I can assure you that this didn’t go to plan…
The sepsis, as always, was very difficult to get on top of, with frequent reviews of my bloods and antibiotic treatment from microbiology and ending up being on IV antibiotics for over four weeks in hospital as things weren’t stable enough for me to return home.
During this time, as always when I am septic, my Gastroparesis really flared up which resulted in my vomiting up my feeding tube which had to be pulled out the rest of the way as it was unsalvageable. Eventually an attempt was made to replace it in Endoscopy which failed, and the tube had coiled back up before I was even out of the Endoscopy suite. Days later a second attempt was made to replace it (putting in an NJ Tube that was down to my knee?!), which I got back up to the ward with only for it to be vomited our around an hour later. To say I was gutted would be an understatement, and after going for almost two weeks with no nourishment, frequent vomiting, vomiting blood etc I was becoming increasingly weaker and all surgeries and procedures becoming riskier than they already were.
It was then decided that, after three failed NJ tubes, weeks of being left with no nourishment, my vomiting remaining relentless, my electrolytes critically low and my blood sugars uncontrollable, that a surgical PEGJ tube would be inserted, and so on 20th May this was done.
The following day we trialled feeding into the intestinal port, only beginning at a rate of 15ml/hour to find the pain, vomiting and bloating unbearable, before the feed began backing up so I was throwing it up and we had to pause it. We continued, lowering the rate of the feed until we reached 5ml/hour where the problems persisted and the feed had to be stopped. This continued and so it was confirmed that I’d gone into total intestinal failure.
Prior to the COVID lockdown I’d been referred back to St. Mark’s Hospital, Northwick Park for my Gastroparesis and Crohn’s care to be under one roof, but when the Coronavirus struck (with St. Mark’s being one of the worst hit hospitals) all appointments were cancelled and my referral appeared to be lost in the mania of everything. With the doctors telling me continuously that I was ‘out of their remit’ they tried to get hold of St. Mark’s for specialist advice but we’re ‘unable to get hold of anyone’. My electrolytes weren’t being replaced, my blood sugars not controlled and it took a formal complaint to get the care I needed.
Eventually, weeks later, the doctors got hold of St. Mark’s who confirmed I needed to be transferred to their ‘Intestinal Failure’ unit, one of only two such units in the country, the other being in Salford, Manchester. However, transfers were still suspended due to COVID, and a very long waiting list already in place. It took a while for the referral to be accepted which it now has been, and transfers recommenced a couple of days ago but I’ve been told to expect to wait ‘months not weeks’. St. Mark’s have advised the team here to start me on Total Parental Nutrition (TPN – nutrition directly into a vein) which I’ve been on for two weeks now and meets my total nutrition and fluid requirements.
TPN has literally saved my life, although it’s far from ideal and it’s not without risk. Firstly, a form of central line is required for it to be delivered through with a dedicated lumen for the TPN alone. When I was first brought in here a single lumen PICC line was put in as my port couldn’t be used and was removed, and I was reliant on all IV medications, as I still am. When the decision was made to start TPN, a Central Venous Catheter (CVC) line was put in my neck. This had a dedicated lumen and the TPN was commenced through that, starting off with it running for 24 hours a day and gradually reducing it down to 12 hours overnight. However, a CVC is only temporary and TPN will be my source of nourishment for at least the foreseeable future, and so a longer term Hickman line was put in.
Having another tunnelled central line, even more so being so close to the areas of my previous septic ports, absolutely petrifies me, but unfortunately I was severely malnourished and there just wasn’t a choice. TPN also comes with its own potential complications, including; dehydration, electrolyte imbalances, poorly controlled blood glucose levels, infections, liver failure as-well as vitamin and mineral deficiencies.
I’ve never struggled as much mentally as I have in here over the past seven weeks and continue to do so. I’ve currently got an infection in my PEGJ, pain, vomiting and bloating remain unrelenting day and night, I’m absolutely exhausted and to be honest, I’m petrified. I’m not stable enough to go home, and I can’t be sent home from here on TPN which means that I have to remain here until I’m transferred, but at the moment being transferred just feels like something that’s never going to happen. I’m making no progress being here, but I’ve got to wait here to get to where I need to be which is far easier said than done; I know I couldn’t cope at home like this, but it doesn’t make waiting here dealing with what I am any easier.
My Mum and I just wanted to finish this post by saying a huge thank you, from the bottom of our hearts, for the love and support shown by certain friends and family members over the last couple of horrendous months. Your offers and acts of help and kindness have made the world of difference to us in an extraordinarily difficult time, and your messages, cards and gifts truly mean so very much to me and are all up here brightening up my hospital room.
“Strength grows in those moments you think you can’t go on but keep going anyway.”