Going on the list

Hello there, my name is Ayaz Akram.

More frequent chest infections, lung function tests dropping quite dramatically and decreased oxygen saturation levels.  These were the reasons why my doctors said I should consider going on the transplant list.  At first I couldn't get my head round this startling revelation.  My lungs were not going to last me forever I always knew that, but I hadn't expected them to bail out on me this quickly.  In reality they weren't bailing yet but the doctors said they may well be about to.  Eventually I talked to some other people about my dilemma and their words were of great comfort and relief.  I agreed to go for a transplant assessment, where I would talk to people who dealt with these sorts of situations on a regular basis.  The staff from the Transplant Unit was very helpful and they answered all the questions my family and I had.  The assessment lasted three days at Papworth Hospital, which was the hospital I was seen at anyway.  I had more or less decided to take the doctors advice go on the list, however there were a few loose ends to tie up first.  I needed to have my varices banded at Addenbrookes to reduce the risk of a major bleed as my also have an enlarged liver.  Finally after this was done and checked over a period of five weeks I was ready to officially go on the waiting list for a Heart and Lung Transplant.  I remember the day like it was just yesterday.  My bleep arrived on November 13th 2001. I had to carry this with me wherever I went and it could go off at any time.  My plans to go to university had been put on hold temporarily and now I had to keep myself as well as possible and with no school, college or work to worry about that is exactly what I did.  For the first week I must admit that my heart skipped a few beats every time the phone rang.  There was a humorous moment when the phone rang at five o clock in the morning. I woke up breathing heavily and my heart pounding.  My dad went to answer the phone and I listened with intent.  I heard my dad getting really excited and talking loudly, which he actually does on a regular basis anyway.  I thought it was the hospital ringing saying that they had found some organs for me.  It turned out to be my granddad from Pakistan (where they are five hours ahead of us in England).  I didn't have long to wait before I went through the real thing.

The date was December 27th 2001 and I had just got back from shopping in Milton Keynes when the hospital rang saying they had some organs that looked very promising.  I was at the hospital within two and a half hours of receiving this call.  My parents were with me as well as my older brother.  We waited over two hours before we were told that the lungs were full of bugs and therefore not good enough for me.  I went through all sorts of emotions and to be honest wasn't sure whether I should feel relieved or not.  I had just experienced what is known as a false alarm.  At least it prepared me for what was going to happen when it was the real thing.  So I carried on waiting and then came a critical time in June 2001.  I had to decide whether I was going to take up my university place in September.  After a consultation with my doctor I decided to put off university for at least another year, but I still knew I ha d to do something to keep my mind active, as I had been really bored and restless for the past six months, after Christmas.  I decided to go back to my old high school to do some voluntary work as a Classroom Assistant, which I am still doing and enjoying very much.  On November 23rd I had another call from the hospital saying they had some organs for me.  This time I was not called in and waited at home for an anxious hour and a half while they checked the organs.  Once again the answer was in the negative.  My third false alarm was just after the New Year.  So we come to the present day where I am still waiting for that all important phone call.  I have been on the waiting list for over fourteen months and though disheartening at times, I am reassured by the fact I have had a number of false alarms so I do know that they are on the lookout for me.  I try to take things in my stride and not let situations get on top of me and put me down.  I believe that everything happens for a reason and I am well supported by a close network of family and friends.  I take each day as it comes and look forward to the next.  This is just my may of dealing with things and I know it's not for everyone but it does work for me.  I am very hopeful that I will get a phone call in the near future that will change my life forever.

By Ayaz Akram February 9th 2003