Wednesday, 3 October 2012

Great Limitations

The old adage is correct - time certainly does fly, another six months have shot past, marked by another half yearly transplant assessment at Harefield. The results of the various assessments were alright in themselves, particularly seeing as I’ve only just been released from hospital and am still trying to build up my strength. However, I definitely noticed that this visit to the clinic was much more physically demanding than previous times which illustrated the fact that I have deteriorated somewhat since my admission to the Brompton.

After the glut of tests and a rather tasty lunch, the wait to see the doctor began. This time I got to see one of the consultants – Dr Carby, who is a lovely bloke and has experience in dealing with Cystic Fibrosis as well as the whole transplant she-bang which makes him really understanding of my condition. The whole team were already aware of the downturn I had taken and the ensuing stay at the Brompton. Dr Carby was able to deem me still fit for transplant, but the urgency of needing one is far greater now. The frustration he feels about my situation (and undoubtedly many others) was palpable. There isn’t really anything that he or any transplant team in the world can do to help me as the lungs that I require are incredibly rare. It is just a waiting game; One that I have been playing for two years and nine months, with no success so far. It is just a fact that small, O negative lungs are hard to come by.  This led him onto discussing with me the use of ‘extended criteria donor lungs’. This group of lungs include heavy smokers, lungs from over 60s, lungs from intravenous drug users and participants of ‘risky sexual behaviour’, donors with brain tumours, lungs from donors with viral infections including hepatitis and other drug manageable blood viruses.  Getting a good pair of lungs, but contracting a long-term viral infection would mean additional drug management and does pose medical risks, but given the state of my lungs as they are, this (whilst not ideal) still represents a better quality of life than I have at the moment and a better chance of a longer life. My window of opportunity of being ‘fit’ enough to survive a transplant operation is becoming smaller since my latest ‘blip’ as the doctors cannot predict how unwell I will become. Any chance of increasing the number of donor lungs available to me is one I’m willing to take. Therefore I signed the consent form (whilst blubbing, obviously) and Dr Carby said he would make a recommendation to the surgical teams. 

Dr Carby also wanted me to think about whether when the ‘time’ comes, would I prefer to be at home with my family and made comfortable or would I like to move to Harefield and receive ECMO (Extracorporeal membrane oxygenation) in last ditch attempt at getting lungs. ECMO in essence is a machine which performs the gas exchange (oxygenate and removes carbon dioxide) that the lungs should do, but outside the body. This is not a very nice procedure and is basically a way of buying me a little more time. I think I would want to fight to the bitter end as I am a fighter – we all have a survival instinct in us. Mine is really bursting out of the seams at the moment. At the moment I feel I would opt for ECMO, but it is incredibly hard to comprehend. 

It saddens me that doctors have to push the boundaries of medicine to increase the number of lungs available. If there were more donors on the organ donation register would it be necessary to put patients at additional risk? 

Having been a bit negative and feeling a bit fed up, I will not let CF define me nor defeat my spirit. CF is NOT greater than God. CF has taken away a lot of things from me, but it cannot take away from me my family, my pets, my friends or my love for them all. 

You, Lord, are all I have, and you give me all I need; my future is in your hands Psalm 16:5 (GNT)


  1. I know how hard this wait must be for you,I have been there, but stay strong and keep faith in the future. Dr Carby will do what he can to get you lungs. I am sure that God will help you and your family overcome these difficulties.
    You are in my prayers:)

  2. Thanks so much Mark. I'm feeling much more positive now and I am just leaving it all in God's hands... and just focusing on enjoying my life day by day! :)

  3. Hey Hun, if you want to talk about ecmo then I would be happy to chat about all the ups and downs. Just drop me a message xxx

  4. We are both on the register. If i could give you a bit of my lungs I would. You are simply brilliant, a survivor and example to the rest of us. James xx