Up The Farway Tree

The Dress Rehearsal - Part 3

It was not long before I was stable enough to be moved back to the surgical ward. Amusingly when they went to collect my bed from the ward, they found my mum fast asleep on it. She awoke to the voices of two nurses outside the door speaking in hushed tones "There's someone in the bed!" "What will we do?!" Fortunately roused from sleep by this point she was able to reassure them that she was a relative and not some delirious patient who had just wandered into the wrong room.

I had been given a PCA (patient controlled analgesia) in ITU, which is basically a morphine pump which delivers the drug when you press a button. This kept me fairly comfortable for the first 24 hours back on the ward and I was even able to be helped out of the bed and into a chair for a few minutes by a rather enthusiastic physiotherapist, who insisted I had to be mobilised as soon as possible. At this point in time I was more concerned with the issue of my bare bottom peeking out the back of the hospital gown than I was with the pain of sitting up and getting out of bed, so I duly complied. It was extremely uncomfortable to move and I pressed the PCA button a few times to ease the pain. More of a distraction however, was the physiotherapist himself, who clearly used to mobilising people with tubes in every orifice, casually hooked my catheter bag onto the belt of his trousers as it were some stylish accessory. After a few minutes in the chair he allowed me to climb back into the comfort of the bed.

Towards the end of that first day I appeared to become very drowsy, and thinking it was related to the morphine, the pain team decided to remove the PCA and replace it with oral medication, including oral morphine if needed. For the rest of the evening this seemed to be working well enough and I settled down to sleep. I then awoke at 3am and the pain was unbearable. I lay there thinking "if this is the pain from a superficial wound then I will never cope with the real thing."I buzzed for a nurse and was given some tablets - I looked at them helplessly and thought 'these are never going to work!" Over the next few hours I was given various tablets and finally some oral morphine. I expected it to hit the mark but it did little to ease the pain, so being allowed to have it every hour, every hour on the hour I buzzed and asked for more hoping this time it might work. By morning I was in floods of tears pleading with the nurse to please get the pain team to come back - but they were very helpfully on holiday for the Easter weekend! After the ward round however they called an anaesthetist, who came and set me back up with the PCA. By this point I had had enough oral morphine to floor a small horse and was not remotely drowsy, so the anaesthetist explained that my drowsiness the previous day was due to drugs I was given in theatre, and not related to morphine. Finally I had control of the pain again and this eased things greatly.

Despite the better pain relief, it was inevitably still painful to cough which made clearing my chest very difficult indeed. This was made worse again by the Easter holiday weekend, since the on call physios were not familiar with some of the chest clearance techniques I use - so I pretty much had to take care of my own physio. This was something that required a good bit of will power but I knew I had to keep my chest as clear as possible so worked hard on this. However despite my best efforts the infection markers in my blood had started to rise, and it was clear that I now had a chest infection to deal with. Thankfully the transplant team were quick to act and started IV antibiotics straight away in an attempt to keep things under control. Unfortunately this chest infection meant I was now unfit for further surgery had another pair of lungs become available. I was understandanly upset by this at first, as I had almost hoped that by some will of God another call would come before I had even left Newcastle. In retrospect however, it was the best decision that could have been made. I needed time to deal with what had just happened - both on a physical and emotional level.

The next few days passed in a haze of morphine, as I continued to press the PCA button on a regular basis. We were in unprecedented territory pain wise, as they had never encountered someone who had exactly the same wound as my self - it wasn't half as bad as a post transplant wound (although you have an epidural in this case), but pretty sore all the same. Over those few days I had little to say - I didn't really want to talk about what had just happened, all I wanted was for the pain to go away and to go home. I had company all the time, as my husband and parents stayed with me, yet at times I felt alone and so far from home. As those first few days passed and the reality of what had happened began to slowly sink in, thoughts fluttered aimlessly in my mind and I found it hard to concentrate. The doctors kept reassuring me "you will get your transplant - it will happen" and suddenly I was filled with fear. I wasn't even sure I wanted a transplant any more - if I was struggling to cope with a superficial wound and some post op chest infection, how would I ever cope with the real thing? I tried to imagine the phone ringing again, and the coordinator saying to me "we have some lungs". Those words which would have previously filled me with joy, were now associated with fear and pain. Transplant had always been such a distant thought - something that may never even come in time and was perhaps only a fairy tale to chase. Now it felt so real - yet in reality it remained only a hope. The dichotomy of this situation - the being so close, yet remaining so far, was hard to process.

As the days passed and the end of a week became near, I focused on the physical aspect of getting better. We finally swapped the PCA for some oral medications and I coped well with this. I went for a walk along the corridor to prove to physio's and doctors that I was now 'mobilised'. The wound was healing well and all the dressings were removed so I could now shower freely. All in all, I was making a remarkable recovery and astounded everyone with my progress. Although I lost around 1/2 stone in those first few days, due to my recent weight gain I was still at a satisfactory weight for transplant and everything looked good.

A week after the surgery it was decided that I was fit for transfer to my hospital back home, where they could look after my chest more effectively. I felt very unwell on the journey back home - my heart was racing, I felt nauseas, disorientated, and feeling very hot I insisted on all windows being open in the car. It was snowing outside and my family had to put coats and hats for the duration of the 3 1/2 hour journey. On arrival at my hospital I was met by one of my physios and CF nurse - I have never felt so relieved to be in that hospital and for the first time in a week I broke down in floods of tears. There was much hugging from hospital staff and I was ushered into a familiar room, treated by familiar nurses and felt so much better for it. I was however still very agitated at this time and it was assumed that all my symptoms (the palpitations, nausea etc) were related to anxiety. However it later transpired that they were side effects of my pain medication and I felt like a different person when I stopped them - so much calmer and with clarity of thought (It was useful to find this out as I can ask to avoid those tablets post real transplant). I was so relieved to find out that it was the medication, as at several points I did begin to wonder if I was losing my mind.

Back in familiar surroundings, I improved rapidly. With the expert help of CF physios I could work hard on getting my chest back into shape, and now removed from the situation, I could stand back and begin to process the whole episode. As time passed, my anxieties began to melt away and I could regain some objectivity. I did want a transplant. Of course I did. I could now think of the real call without fear - I could imagine taking this journey again but this time the ending would be so different. I began to feel ready for the next time.

More to follow.. (nearly finished I promise!)