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A bowel transplant patient or just a patient? What defines you?
Well this is the first time since August that I have been able to write a blog post with my football team QPR finally having won a match and secured 3pts. Fulham fans, this one is for you http://youtu.be/YE2XSm5-xRk
Yes the QPR revolution is off and running and into phase 2 of the season. My own bowel transplant journey is also probably now about to go to the next phase and whilst that is hugely exciting it has thrown up more questions than answers. In essence it mirrors the lives of many patients so just because I have had a transplant why should that make any difference?
Last week saw me have a full review of all my blood results and a detailed discussion with my dietician Marion about next steps. (as it is Christmas please say hello to her on Linked In she needs more connections so I’m on a recruitment drive) http://www.linkedin.com/profile/view?id=82754883&locale=en_US&trk=tyah whilst the transplanted bowel is generally doing ok the principle remains that if it goes wrong it will somehow get fixed as long as I remain totally focused on keeping everyone updated on any new symptoms. With other levels it isn’t so easy. My lack of absorption has meant that I am deficient in a few areas such as iron, magnesium and vitamin D but infusions should sort them out. What do most people do before Christmas, they shop – me, I get my infusion. Mind you it is holiday season so I am expecting a buy one get one free offer from the NHS. The other issue remains hydration and ensuring that there is no damage to the kidneys. The issue there becomes a lot harder to sort out as it is the anti rejection meds that can, in some patients, really cause havoc with the kidneys. I pretty much know the levels I need to be at and to stay in the safety zone I will need to stay on fluids about 5/7 days of the week with them going through my Mic Key button in my stomach. It isn’t a disaster I know. I mean real disaster would be QPR relegated but what it does do is bring home the fact that a bowel transplant is not your ticket to easy street. You replace one set of problems with another and it is how you cope with these new issues that I think determines what the future holds.
So why is this guy mentioning all of this I can hear you say. Well it is simple. It means that you have to either continue or become and engaged patient, an empowered patient, an educated patient. All of that seems to fall under the term E-patient and when you mention the word e-patient most people thing; what is he droning on about?
Actually I would argue we are all e-patients as let’s be honest when we are a patient we are usually engaged in what is happening to us and we become educated either ourselves but finding things out or simply but listening to what our doctors tell us. So as I enter my own personal phase 2 I would like to think that I have become an i-patient. What the hell is he on about now?
I-patients are in my view, interactive patients. Patients who interact with all aspects of their healthcare. From the doctors and medics to the hospitals, the pharma companies and above all directly with other patients using and sharing their experiences for the greater good of everyone. These days the world is as small as ever and social media makes it even smaller. There is nothing a patient cannot find out if they choose too and to use the well spoken phrase “no decisions about a patient without a patient” put patients right at the centre of healthcare for perhaps the first time ever. So to take advantage of that position a patient has to be interactive. To use their data, to get another opinion, to share a thought or a story patients, in my opinion, have to be proactive and not reactive so from now on perhaps i-patient is the new e-patient.
With that interactivity in mind I want to end by mentioning one thing. I have the huge privilege of being the patient advisor and speaker at the up and coming Doctors 2.0 & You in Paris, France. http://www.doctors20.com/ . You can join me too. Calling all i-patients, if you want to come to this conference check out our video on the crowdfunding site http://www.medstartr.com/projects/113-doctors-2-0-you-funding-epatient-travel-scholarships and if you fancy having a coffee with me in the beautiful Parisian sun then apply or contact me for more info.
Till the next time
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