As I sat there in the tiny room affectionately known as ‘The Cupboard’ having been called at home earlier that morning (5:30am), mixed emotions ran through my head. ‘We have some organs for you, we’d like you to come in’ the lovely lady said at the end of the phone – you’d think I would have been ecstatic, screaming from the rooftops as the news of another shot at getting the organs I so desperately needed had finally come but the overriding feeling I had was anxiety. Not about the operation but because there is always an element of uncertainty and doubt right up to the last minute before going down for surgery and even then it’s not until they open you up…! As with all the other call outs, it was going to be a long day, so going through the motions, I had a shower, quick cuppa and an apple and we were on the road.
Since my last blog I’ve had two Primary calls for transplant; the first didn’t go ahead because the organs couldn’t be harvested (the artery had wrapped itself around the pancreas) and the second time the organs were not healthy enough (fatty deposits on the pancreas making it too risky to use); both those calls were only one day apart, I could hardly believe how lucky and unlucky I was all at the same time. With the first of these calls I told a few people but the disappointment of having to tell them all when it didn’t go ahead meant one day later when the second call came I only told my immediate family. Large support groups give great support but it also means lots of condolences when it doesn’t go to plan; some find that encouraging but for me it was one too hard for me to deal with. It was not until a few days after the second call had been aborted that I told my Nan, best friends and colleagues. For me it was just too painful to re-live over and over again…
This time, on the ward there was no news. After being told to go and get some breakfast we were told that the organs were being harvested from the donor at 10:00am and that was all. I should have assumed the status quo of ‘no news was good news’, but it didn’t stop me worrying like crazy that it was all going wrong. First The Cupboard, now a delay in getting the organs out. Every time a Registrar, Nurse or Doctor walked by my room my heart filled with dread. Were they coming to tell me that I could go home? Were the kindly donated organs unsuitable? My blood pressure went up and down like a yo-yo every time I heard the sound of the Registrars purposeful footsteps walk past ‘The Cupboard’ door. If only those damn iPhone earbuds had stayed in place, it would have made the next few hours easier to cope with; instead I was on high alert!
There was a lot of activity on the ward as the Doctors were discharging patients and Nurses did their observations. All being very sensitive to the people, patients and potential patients sat waiting in the rooms on either side of the corridor. Naturally I couldn’t help but try to tune in but it didn’t help, I couldn’t hear anything related to me, but the ‘nosey’ in me kept my ears pricked – just in case! One noise that was loud and clear was the lunch bell. The warm smell of homely food. Being nil by mouth it felt like torture but good torture, if ever there was such a thing, giving up something for the greater good!?! It’s amazing how focused you can be when you know just how huge the rewards could be. Although the scent of custard truly tested me…
At 3:30pm the Registar, James Barnes came with news that the organs had arrived safely in Oxford (I wanted to jump up and hug him but I didn’t…!) and that the next hurdle was for them to check them to ensure they were perfect. He smiled and told us it was looking good but as he left his knowing nod reminded me that I needed to stay calm and that we weren’t over the finish line yet. The next few hours were killed by mindless chitchat and unnecessary trips to the toilet down the corridor, doing anything we could to pass the time. We were left pretty much to ourselves so I made myself comfy, or as comfy as you can on a plastic chair…the trolley had started to give me a numb bum so I’d swapped with Gary (husband) who was showing me how easy it was for him to fall asleep whilst sat up-right; something he’s mastered in all his years of waiting for me in hospitals. He seemed calm enough, not excited and that was rubbing off on me. Family were texting, eager to know what was happening but I couldn’t tell them any more as it had all gone quiet again. I updated everyone around 5:00pm to give them the reassurance that all was going ok but we weren’t in the clear yet. I felt awful not being able to tell them more because I know they longed for the good news as much as I did…but I couldn’t, we were in limbo and therefore defaulted to not getting my hopes up, I had been burnt before.
It all felt weird, I couldn’t put my finger on it but it felt different. I’d been put in ‘The Cupboard’, there had been the delay in harvesting the organs, being allowed to eat breakfast, we had been told there was no theatre slot for us during the morning, I wasn’t in a gown and had no cannula fitted. I was just waiting to be told ‘thanks for coming in but you can go home now’. Instead time ticked by, nothing from anyone then the Anaesthetist appeared, which wasn’t unusual as I had seen one of their kind on several calls previously. The normal questions were asked and we were interrupted as her bleeper diverted her attention. Politely she dismissed herself and came back seconds later. ‘Just a bleep about your theatre slot’ she said as if she was just saying ‘hello’… It was the first positive sign about the operation going ahead that I turned to Gary with tears in my eyes and smiled, unable to speak. At this point no words were needed, we both knew what those seemingly simple words spoken by the Anaesthetist meant.
No longer than a second after she left James (Registrar) arrived and this time their was no sign of a caveat following his smile, only a double thumbs-up, ‘The organs are perfect, let’s go ahead’. I can remember those words clearly in my mind, slow as if someone was telling me that they were going to be important and that I’ll want to remember them forever. ‘They’ll be down for you soon’ he said as he turned on his heels and left. I’m not sure how I didn’t fall over but I did cry, a short burst of happiness I allowed myself to let out, the words I had been waiting for, the chance of my lifetime so far had just been handed to me. I felt Gary’s grip of my hand get reassuringly tighter as within a minute the medics flooded in, exactly 12hrs since my phone call that morning.
One Nurse with a gown, one with some tablets and another one I have no idea what she was doing, there was too much happening. I stripped off my jeans, Gary was taking custody of my Wedding ring and I was swallowing some antibiotics all at the same time. I tried to call my Mum and Dad but couldn’t get through so handed my phone to Gary with instructions to call them and like magic the Theatre Porter arrived with a wheelchair ready to take me to where my miracle operation was planned to take place. Now this is where I cried…!
Jeans off, tablets taken…all set!
Sitting in the chair the reality of what was about to happen hit me. The whole 416 days I was on the list I hadn’t once thought about the operation itself, sat in that chair making my way down to theatre my nerves started to creep in. With Gary still by my side we said our goodbyes and right then I was more worried about him. I was with professionals, he was going to be alone…this thought kept going through my head as the Anaesthetist I’d met earlier tried (successfully) to distract me. The next thing I remember was some man I’d never met before brushing my teeth with warm water in what appeared to be a dimly lit room and a lady whispering to me that they were giving me a wash…I couldn’t tell if I was dreaming or this was standard procedure; either way I was happy to play along!
After my freshen up and as if she was telepathic a Nurse asked if I wanted to call my husband. At what seemed like a silly question I vaguely remember giving her my house phone number which after trying wasn’t answered and then Gary’s mobile number – how I did this I do not know, I can’t remember it now as I type. Obviously being pumped full of pain relief helps your memory. The phone was ringing and I heard the connection of the call and I calmly said ‘Hiya…’ To me it was like he had just stepped outside and come back in but I could hear in his voice an overwhelming sense of relief ‘Hiya…’ he replied.
What seemed like a heartbeat later I could hear familiar footsteps. Not the ‘professional’ kind but the kind of ones I’d heard a thousand times before: walking across our drive, down the aisle and now into intensive care. Smiling through the tears in his eyes he was finally by my side, holding my hand and telling me how proud of me he was…I just wanted a cup of tea!
Waking up in Intensive Care after a ‘freshen up’ and a cuppa. My new life was just about to start!
Diaries of Lea 