My Dress Rehearsal

Waiting for a transplant is a really odd situation to be in. The doctors and health care professionals urge you to live as full and as normal a life as possible. However, you do need to remember to have your mobile phone on you at all times – or at least be contactable, should ‘that’ call come. On some days life is fantastic and Cystic Fibrosis and being on the transplant waiting list is the furthest thing from my mind. Yet on other days it’s all I can think about. It is so easy to sit at home and become tearful, morose and upset. Pondering questions such as; will I ever get the call? How much more ill will I become before I get the call? People who have had transplants themselves and the team at Harefield and the Brompton say that when the call comes, it will be totally out of the blue. I have had one false alarm, which did indeed ‘come out of the blue’...

In fact it was on Tuesday 1^st March at 3.50am. Wrenched cruelly from a lovely sleep my darling husband Luke grunted at me ‘was that the phone?’ (As if I had made the call!) My response was something like ‘Shh... sleeping’. Then the phone rang again. We instantly knew it would be Harefield who else would ring at that hour? When Luke passed me the phone and the transplant coordinator explained that there was the possibility of a set of lungs becoming available my mind instantly turned into slush. We had planned what we would do when the call came. Our original plan was:

1. Ring my Mum and tell her we would be picking her up in about 10 minutes
2. Get washed and dressed quickly
3. Get my pre-packed overnight bag from under the stairs whilst Luke filled up my portable oxygen unit for the journey
4. Ring Luke’s parents to keep them in the loop and then leave, get Mum and head up to Harefield.

What actually happened was:

1. I burst into tears and stood in the middle of my bedroom for what seemed like an eternity.
2. Couldn’t decide what to wear so ended up getting previous day’s outfit from the washing basket
3. Cuddled my cat a lot as I didn’t know if this would be the last time I would see him for a while (if ever)
4. Forgot to wash and brush teeth.... Fortunately Luke was able to complete the rest of the plan without me, so although I was a dithering wreck, Luke kept us on track!

Picking Mum up at ridiculous o’clock in the morning was awful. I hugged my Dad and brother (Ian) wondering if this would be the last time I would see them. Poor Ian had been hastily woken and anyone who knows Ian will understand what a feat this!! I honestly cannot remember the 55 mile drive to Harefield Hospital in Uxbridge. I think Mum and Luke were chatting away but it could just as easily have been the disembodied voice of the SATNAV.

After my initial meltdown and detachment in the car I was surprisingly calm and collected. We arrived at Harefield and were taken up to a ward where we were met by the transplant coordinator. I had a lot of observations and blood tests taken, to check for infection levels to make sure that I could actually undergo the operation. As you are given immunosuppressant drugs prior to and after the transplant, it is important to ensure that infection levels aren’t too high. During this time, the potential donor was also having similar tests as well as tissue typing tests to ascertain who would be the best match for the organs. This leads me on to explain the fact that the hospital will always call two potential recipients for the transplant, to ensure that the organs actually get used. We were told that the results of the donor’s tissue typing test would decide which of us would potentially receive the lungs. (I must point out that the two potential recipients do not meet at any point!) I was also met by the on-call anaesthetist, complete with pillow crease embossed into her face. 10 minutes later the transplant coordinator was back to say that the tissue typing was not a match to the other recipient so I was ‘officially’ offered the lungs. It became very real very quickly at this point. I was whisked away for an x-ray, then had to sign THE consent form.

 The consent form signing represented another nervous moment. The rather impersonal, detached doctor who delivered the long list of risks and one sentence of benefits in this form may as well have been wearing a long black hooded cloak and have been carrying a scythe... The ‘cons’ which were pretty difficult to read through the tears included ‘death 10%, stroke 5%, risk of further surgery, acute rejection’ I have to confess, I didn’t read any more as I felt the worst had been read! The pro(s) list read ‘increased quality of life and expectancy’. Although the pro list was a lot ‘shorter’ the implications of those words far outweighed the lengthy ‘cons’. Luke and Mum quickly reminded me that it IS what I want – an improved quality of life would be amazing (life without a tether, hardly seems possible!!) I have to write here something that in hindsight had Luke and Mum in stitches, after reading the form I said something along the lines of ‘you aren’t going to give me s**t lungs, are you?’ to this rather aloof doctor. He was NOT impressed (he looked almost as if I had personally insulted his intelligence!) 

I was quickly washed down with surgical scrub and put into a rather sexy gown and taken down to the theatre waiting area on a trolley. The transplant coordinator was in constant communication with the donor hospital and gave us regular updates on the situation. At this point I was basically waiting to hear about the status of the donor’s lungs and whether they would be viable for the transplant. As soon as the go ahead was given I would be taken through to the preparation room and prepared for surgery (drugged, etc!!). It is hard to explain in one paragraph the guilt and associated feelings of basically having to wait for someone to die so that I can have a bit longer to live myself. (I’ll discuss this in another blog.) I met the surgeon and some of the team who would potentially be performing and involved with the procedure. Of course my mother thought the surgeon was ‘rather dishy’! The nurses in the waiting area were lovely and kept Luke and Mum in tea and biscuits. They had not eaten since dinner the night before and it was now 10 am. After two hours of waiting the donor lungs were unfortunately deemed unviable.  Devastatingly I had to get my belongings from the ward, and then go home. I feel I must stress at this point that the staff at Harefield Hospital are incredibly kind and caring and worked so hard to keep us constantly informed and put my family and I at ease wherever possible.

It is really hard to describe how I felt leaving the hospital. On one hand I was pleased to be going home and relieved not to have to go through a life threatening operation. On the other hand, the transplant is going to (hopefully) give me a better quality of life and increase the length of my life compared to that without a transplant. I felt so sad, not only for myself, but for the donor’s family who couldn’t donate the lungs which is obviously a wish they wanted to honour. I felt the pain that the other recipient felt at being sent home. I could also sense my family’s disappointment. It was now well past lunch time, so I consoled myself by eating a 20 piece chicken nugget meal... I really do not want to dwell on negative thoughts and emotions, but it was hard to overcome ‘the time that almost was’. I kept hoping that the next call would come again soon, but time does heal, no matter how corny that sounds. With the love and support of family and friends I picked myself up and am getting on with life. 

More than 10,000 people in the UK currently need a transplant. Of these around 3 a day will die waiting as there are not enough organs available. Many people with CF decide against having a transplant and opt instead for palliative care. Neither decision is reached easily; especially in your early twenties (not that age ever really plays a part in these decisions). I decided to go down the transplant route as I believe it gives me hope. It is an emotional roller coaster, but it also gives me something to hope for, I don't know when or if my call will come, but I stay strong in the hope that it will and try to live each day to the full! My faith keeps me strong and I particularly find the following bible passage comforting. Romans 5 v3-5 ‘...we rejoice in our sufferings, because we know that suffering produces perseverance, perseverance character; and character hope. And hope does not disappoint us...’ 

A cuddle with Oscar