Having been told I was a nutty blogger type by the doctors in Part 1 I have to admit that my confidence took a little knock. I have subsequently though met with the chair of that strategy group who has vowed to ensure that patients really are at the heart of decision making. His vision helped restore some of my faith. A few days later I attended a patient entrepreneurs meeting that the Centre For Patient Leadership under the stewardship of David Gilbert (@patientleaders). It reaffirmed that I wasn't an oddity (although sticking with a relegated football team like QPR may be qualify me as one) and that I had to find a way of making people like that understand why I am so passionate about peer to peer interaction.
In June I will be attending the Doctors 2.0 & You conference in Paris where I am incredibly humbled to be sharing a plenary speaking slot with my dietitian Marion O’Connor. We will be talking about use of digital technologies in healthcare and how patients and health care professionals interact using everything from a text message to social media and beyond. If you want to attend a conference about the future of healthcare then this is one not to miss.
My first working block at School of Social Entrepreneurs is now over and without doubt it was one of the most inspirational weeks I have had. Aside from meeting a fascinating cohort we has some fantastic expert witness sessions. One that stood out in my mind was from Orin Lewis OBE who with his wife Beverley De Gale started 17 years ago the Afro Caribbean Leukaemia Trust, (ACLT). Having lost a son to cancer he went on to develop this trust to promote organ donation among the black community. It transpires that if you are afro Caribbean then you are 5 times less likely to get an organ donor as a white person so their campaign is all about getting people on to the register. Apart from being a powerful speaker much of the content really resonated with me. He talked about what it was like waiting for a donor, what it was like coping post-transplant and then the complications that sadly led to the death of their son. At one point I had to leave the room as it became very emotional for me for it also got me thinking.
It got me thinking about how lucky I was to get transplanted so quickly but it was a real reminder as to how you start yet another journey post-transplant. So many people just assume that once you are transplanted everything is fine. Well it isn't and the risk of complications, organ failure and other associated problems remain. I think the key is remaining in a positive mental state and Orin certainly spoke so eloquently about that.
There were though some similarities between what Orin and ACLT experienced and me. Let me explain a little more. As you know I am Jewish and there is an ongoing debate in within the Jewish community over organ donation. Under Jewish law there is a debate over the definition of brain stem death. Religious Jews would like a Rabbi to be present when this decision is made and without that they will not carry an organ card. In fact this is the same with other sections of the community and other many other religions. In no way do I wish to pass judgement on anyone. I just feel that the principle of being able to take but not necessarily give is one that should be debated further. This subject matter may well go away of its own accord if the UK government does what it is alluding too and allows a religious leader of whatever faith you are of member of to be present when a brain stem death decision is made. Currently the rules on organ donation are subject to much scrutiny.
From my own bowel transplant perspective I am still spending quite a bit of time back at Oxford. I have started on my bile mal-absorption treatment taking 6 tablets a day of what I describe as horse pills but the doctors call Cholestagel. I was also taking phosphate tablets but they caused untold damage to my backside. Yes John Terry saw more of me than it had done even on my worst day. So they have been stopped. I now have regular bloods to check the levels. Prior to infusion I was down at a level of 0.27 and apparently I need to be around 0.70 -0.90 so a bit of a way to go yet.
Talking of bloods I broke my all-time record on Friday. I am able to announce a world exclusive – don’t get to excited but it took 9 attempts to take bloods. Yup you read it correctly 9 attempts. Now the blood team are brilliantly I just think my veins had decided to go on strike. So between trying to put a cannula in for the CT and take a dozen tubes of blood I came back with 6 bits of tape on my arms and two reddish patches. In the end they managed to get some blood from the knuckle in my left hand and from a vein in the underside of my forearm. My admiration for the blood team has gone up another notch. The only saving grace for me was that I was doing a phone interview for most of the time so couldn’t really complain about the pain. If only the person on the end of the phone knew that she was talking to me whilst I was under attack from a needle frenzy.
Tuesday will bring on a colonoscopy as they look again at the area where my stoma was reversed. So I will update you with those findings in the next post.
I wish I could end with a bit of good news on the football front but sadly my team have been relegated. QPR or as my kids used to call them – Quarter Pound of Rubbish – have lived up to their nickname and will be starting next season out of the Premier League. I think that hurt me more than the phosphate tablets. On second thoughts they both bought on the runs.
Till next time