I thought I’d be in hospital again this last weekend, as I was rescheduled to have my stomach fundoplication operation last Friday. This was following it being cancelled the previous week at the last minute just before I went down to theatre. The whole incident had felt very stressful, especially with the added stress of struggling on public transport to get to London and back in the heavy blizzards, snow and freezing temperatures. The whole incident had taken some ‘coming down’ from.
I was contacted the day afterwards though, with many apologies and a promise of now being a ‘top priority’ and that I would be scheduled to be ‘first on’ for my next appointment. I therefore agreed to a new date of Friday for the operation to go ahead again and all the papers were sent out to me confirming it. In some ways I had reservations, as I needed to start the mental and emotional build up all over again, so soon after the big ‘come down’. It’s an operation I know I need, but don’t particularly feel very enthusiastic about.
After all the years of procedures and operations on my heart and lungs, I do feel reluctant about having other parts of me operated on. I worry it will cause more things to be monitored, more clinics and doctors to be under, more things to possibly go wrong.
It might seem that I’m ungrateful to feel like this, but I’ve had a difficult run over the last eighteen months with my lungs and I’m voluntarily going to put myself out of action for a while yet again when I’ve only just got back on my feet.
There also comes some high risks with this whole procedure being an immunosuppressed patient, a heart and lung transplant patient and a patient with poorly functioning lungs, so I’m actually quite frightened about this and quite scared of ending up in a worse state than before.
A risk of chest infection is high due to ventilation during the process. The thought of going through something like the pneumonia again, that I experienced last spring and that damaged my lungs is terrifying. There aren’t any guarantees, but the plan is that I will be looked after in intensive care and all the risks will be of high consideration throughout.
So why am I putting myself through all this? My lungs are struggling to work properly now, they have less than 50% capacity. There are several problems including damage from rejection, pseudonomas, damage from infection and damage from stomach acid. Lung transplant patients often suffer from the stomach problem due to the actual transplant operation and new organs displacing the stomach and the continual use of necessary steroid medication damaging the sphincter muscle. If the problem is left uncorrected then in time the lungs will continue to be damaged and reject.
All three of my transplant consultants are in agreement that the operation will help prevent this happening and basically if I don’t have it done then my lungs will continue to decline in function and reject again. This operation is therefore a needs must despite all my reservations.
So off we went back to London for the fourth attempt at this operation, it had had to be cancelled a couple of times previously due to my ill health too. The weather was mild and dry so we had no extra stress and hazards with the travelling like last week. We travelled down the day before the planned operation, as it was the usual 7am and ‘nil by mouth’ start on the Friday morning.
It was Mother’s Day weekend coming up and knowing I was going to be in hospital and unwell on Mother’s Day, we met up with Rose and David and had a nice dinner to celebrate early. This felt extra special, despite the impending operation the following morning, as I’d spent Mother’s Day in hospital last year. At least this year we’d had chance to organise and celebrate. We’d had to put off any celebrations with Sarah, Oli and Freddie though, because they’d all had bad colds and viruses and I hadn’t been able to see them for nearly a month or so because of the risks being immunosuppressed.
7am on Friday morning and I turned up ‘nil by mouth’ for my surgery only to find out that I wasn’t even on the surgical list for that day. I was asked to sit and wait in case the surgery might be going ahead. We waited, waited, waited, waited…
Basically no-one did anything about it, there was no-one available to see us and no-one to explain what was happening or what had happened. After we kept on chasing the receptionist, who did her best to contact the relevant people, hours later I was eventually phoned by someone from the admissions department and advised it was all my own fault and I shouldn’t have ever turned up for the appointment as it still needed to be confirmed. I think I saw red at this point, as I was sitting there holding on to all the ‘confirmation’ paperwork!
Rob took the phone and eventually the person admitted they had copies of the ‘confirming’ letters on screen and that it had all been a mistake that they’d been sent out to me. So that was that, another cancellation, another load of stress and expense of hotels and travel for nothing and to add to it all not even an apology or any proper explanation from anyone! We were advised to speak to the hospital PALS office, which we did on leaving. We have formally complained as the whole incident, compounded with the cancelled operation the week before has left us stressed, angry and upset. We shall see what the outcome is and how they can explain what happened.
In the meantime, I have received a new date for yet another attempt at the surgery – attempt number five. Watch this space…
As the saying goes though, ‘every cloud has a silver lining’ and I was able to enjoy a lovely Mother’s Day weekend after all, spending loads of time with Sarah and Freddie and still being able to eat and drink normally and feeling well. A huge improvement on last year’s Mother’s Day when I was poorly in hospital and much more than I had expected for last weekend. Now I’ve time to take stock, enjoy and make the most of life for a few weeks before we try yet again.