Being chronically ill is far from easy (as many things in life aren’t), but I’m not sure the mental implications of what we go through are always realised, by medical professionals in particular.
Being in pain, having to use a wheelchair, spending lengthy periods of time in hospital etc all impact me mentally, but this week I was absolutely mentally shattered when my knee surgery was cancelled on the day it was due to be done. Due to my complex medical history and previous reactions to anaesthetics I’m considered ‘high risk’, which means quite a lot more planning and preparation has to go into an operation before it can be carried out.
I suffer dislocations of multiple joints because of the nature of my EDS, but my knees have been problematic for one of the longest. An MRI I had done a while ago showed that, due to increasingly frequent dislocations, my MPFL ligament is now so lax my patella is no longer being held in as it should be, meaning dislocations are becoming more often such as by just a small movement in the night and the pain is relentless.
I have tried various specialist physios, hydrotherapy, orthotics etc, but nothing has been able to help. I then was referred to orthopaedics locally whom I was ‘too complex’ for, and so they referred me to Guy’s Hospital. After my case was found to be out of the surgeon’s remit whom I saw there, I was referred to one of the top surgeons in the country for these kinds of MPFL reconstruction surgeries (using a donor ligament due to my connective tissue being defective no matter where it’s taken from), which took another year until I got an appointment.
Eventually after the consultant examined my knees and scans etc, I was put on the list for the surgery but my two bouts of sepsis last year delayed this being done, and after having another pre-op, a lengthy appointment at the high-risk clinic with a full pre & post op plan, the date for the surgery was set for last Wednesday 26th February. I was told to arrive the night before for the pre-op plan to begin and then I’d have to go to Intensive Care afterwards (as always) due to previous respiratory issues after anaesthetics.
I phoned the hospital on Tuesday at midday, and the lady I spoke to told me that my bed was ready and everyone was expecting me. Despite this being planned months in advance, I should have thought it was all too good to be true with the luck I have, and I turned up to the ward to find that no one had a clue that I was coming, there were no beds and no one could track down whom I’d spoken to on the phone just an hour or two before. I ended up being put on a different ward as there was no way I could be fitted onto the Orthopaedic Ward where I should have been, and then I had to wait for the doctor to have my medications written up. Finally, 9 hours later at 1.45AM, the doctor came; by this time I had vomited so much bile due to not having my meds etc, I was so dehydrated as I also had to fast so couldn’t even drink and the plan set out by the high risk clinic had only just been started.
The morning of the surgery came (although I had basically no sleep the night before) and I was prepped for the op. I saw the anaesthetist whom (fortunately) was fully aware of my case and had put everything in place including getting a second anaesthetist in to support her for my procedure, I saw the surgeon who marked my knee and said I was first on the list, due to go down in the following half an hour, and so I waited to be collected from the ward.
Unfortunately, this waiting game continued for the following 6 hours as there was no Intensive Care Bed available for afterwards; this resulted in finally, at about 1400hrs, my surgery being cancelled.
I had no words, only tears.
This has happened to me before and it’s never easy, but this has been so long coming, there has been such a build up and preparation for this surgery, and whilst any procedure is nerve wracking, I felt particularly anxious for this one. It’s no ones fault, emergencies happen and ICU bed availability is unpredictable (I’ve been an emergency myself going into ICU and I know they must take priority), but I just felt beyond devastated. I can’t even express how I felt.
Whilst there was nothing that anyone could do, I don’t think that the mental implications of being let down like this are understood. For the surgeons and medical professionals it was just another day at the ‘office’, but for me it was the chance to improve one of my symptoms delayed. It was the sleepless nights over the risks of the anaesthetic going to be dragged out for even longer. It’s the unknown as I still don’t have a revised surgery date. It’s having to disrupt my feed and medication regime for fasting again. It’s ultimately having to mentally psych myself all over again for a hospital stay, a surgery with potential complications, time in Intensive Care, pain, recovery (which I should have started now) and everything else that comes alongside that.
Obviously there are also practical implications as a result of the cancellation too, but it’s really the mental ones that I struggle to come to terms with. All I keep thinking is that the worst bit would all be over now, I’d maybe be home and my recovery would have begun. Instead, I’m stuck in limbo waiting for another operation date with all of the emotions, worry and risks of the surgery to come once again.
I honestly wouldn’t have got through this week without my Mum being there every step of the way; I don’t know where I’d be without her. I’m also insanely grateful for the love and support of our friends and family as, from the bottom of my heart, it’s what keeps me going through the difficult times like these.