Was 2012 the year of the patient?

This is now my second Christmas since my bowel transplant. Last year I had been out of hospital for a day post my transplant surgery and this year I am thankfully in a much better place. The odd cracks are starting to appear but I’m banking on them not being anywhere as bad as the transplant itself. One of my current challenges is where to inject my anti sickness meds. I take them intra muscularly and a the moment I don’t have that much feeling left in my left leg and better still when I sometimes inject in that leg I can see the liquid spurting out of another hole in the leg that hasn’t yet healed. It is probably something that Darren Brown or David Blane would be proud of but actually it blooming hurts and what a waste of good, beautifully matured neat cyclazine.

Perhaps the bigger challenge is staying hydrated and that is proving a little more difficult with each passing week. It is a difficulty perhaps only matched by my football team who after one victory have reverted to type and lost again. Actually our defence is a bit like my legs right now, full of holes and always leaking. It is a complicated process combining anti rejection meds with preventing kidney issues but hey life is all about challenges so I have no doubt we will sort this one out. I think, I hope, actually I really hope.

So I am guessing that if I was to give myself an end of term report as a patient it would probably be a decent grade for effort and completing my homework and the usual teacher phrase of “could do better but still pretty good” when referring to the body itself. I have never been a straight A student so hey it isn’t bad.

That is me as a patient looking after my own health but what if there was an overall grade for patients in 2012. 

is this your doctor?

 I think the teacher would have to state that there has been a dramatic improvement since last year; the level of classroom engagement has increased enormously and now the challenge is to keep that up and move on to the next level where patients really do ensure changes happen. I am absolutely convinced that 2012 has seen patients really put their heads above the parapet and really increase their voice in the world of health care but I guess to take it to the next level it has to be all about change and impact. I think that it is inevitable that those, like me, with long term conditions tend to engage more than those who may be unwell for a short period of time but return to good health in a matter of days. However the key thing in my opinion is that it is the sum of all of us that makes patients such a potent and powerful voice. In all walks of life there are those that are happy to be a little more vocal or push a little bit further but with those patients may be considered i-patients and more interactive we are actually nothing unless we all work together.

I guess in my own little world I see things in healthcare as no different to government or any national or international organisation. You can have Presidents or Prime Ministers or Ambassadors but they are really figureheads for us all. Patient leaders are the same and quite often it can be all too easy to get caught up in lovely conversations with people that you think of as your peers talking in wonderful circles about how patients will change everything and what this one or that one has done wrong. Talking at that level is fantastic, it is intellectually stimulating, it is thought provoking but it is often not the real world. I have been to a few health conferences now and even spoken at a few and the buzz word(s) is always “patients” or “patient engagement” but often that is marketing speak. 

How many really know what it is like to be in a waiting room when there is not enough room for patients to even sit. How many have talked to patients who have to stay in a treatment room because there are no beds on the ward or have to get admitted as an inpatient for a few hours in order to get an urgent test done? Better still how many have experienced what it is actually liked coping as a patient, being served food that is inedible for the 10^th day in a row? These are real patients who need to be embraced and taken with on the journey for real change to happen within healthcare.

So to answer my own question I think that 2012 has seen massive advances by patients. The self management via social media has been huge, patient communities are growing, how we now engage with our doctors is changing so rapidly it is amazing. As engaged or interactive patients we now have a duty to share our experiences with the wider patient communities and then 2013 can be the year that patients affected change. I am going to try next year and use the hashtag #patientpower as I truly believe that it is what can change the way healthcare is delivered forever.

As for right now, well I have a few Christmas wishes I want to pass on. To my transplant team at Oxford, who I am sure will read this, thank you from the bottom of my heart for continuing to change my life. To all patients but especially my bowel disease friends I hope that 2013 bringing you happiness and the health you deserve. And finally to Harry Redknapp and the team at QPR – we have a manager we could never have dreamed of having a few seasons ago so get your act together and sort yourselves out otherwise I will be sending you all for a colonoscopy without sedation!!!

So the kids are nearly finished catching up on an episode of Merlin and then it is off to make another batch of chocolate brownies for my daughter’s party on Thursday. My son kindly misread the instructions on my first batch and let’s just says that 1 teaspoon of salt ended up being a few tablespoons – enough said!!

Thanks for reading my blog, following me on social media and engaging with me, your support and friendship makes it all worthwhile.

Till next time

x

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? 

is this you?

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

x

Retraining your brain to flip out of patient mode is really hard

I have only really heard of the term “flip flopping” in connection with UK politics; in other words when a political party keeps changing its mind on policy. However at the moment I think it best describes the challenge that lies ahead in getting to grips with my bowel transplant.

It is not like my new bowel is flip flopping but it is what my brain and my mind set has to do. You see the trouble with long term illness is that you can forever be a patient and forget what it’s like to just be you. I have really only not been a patient for 11 years of my life and now, here I am having gone through one of the rarest transplants, being told to get on with my life and try and adjust to not just being a patient but being Michael. And that is flipping hard. 

For most people the moment you are out of hospital you are fine and there is nothing wrong with you. They don’t see the accidents at 3am and they are not there when from literally nothing I start being sick and it doesn’t stop which is exactly what happened last night whilst watching I’m A Celebrity Get Me Out of Here. So for me there are parts of every day when I feel a patient yet I need to train myself to get out there, do all the things I want to do, put being a patient in a box and get on with life. How do you do this? How do you flip flop from patient to non patient and back again? For me when I have the good spells and feel great it gets much harder to revert back to patient mode when I get sick. I find myself getting frustrated, even angry yet that is totally irrational as I am transplant patient and that doesn’t leave you.

Do they flip flop between characters

Often the easiest things to say are the hardest things to do and lead to silly reactions from me. I fight very hard not to be treated as someone who is ill; yet quite naturally the first thing people want to know is are you ok. I would probably be very upset if they didn’t so why get angry. So as you can see training the brain to flick a switch one way or another constantly is not so easy. I mean take one of my favourite programme's right now Homeland.     How does Brody cope with playing both the terrorist and potential Vice President? Is Carey in love with him or has she trained her brain to be able to simply tease him in to doing all she wants? Hey I know it is only tv but it would be so cool if I could have a script writer come in and just write my week out for me. I could go from one scene to the next, ill patient one minute, recovering patient the next then on to normal dad and hubby before ending the episode back in hospital. We could then all sit down and have a cup of tea in between takes. That would be so much easier that having to do this in real life.

So as farfetched as it may sound I am on a mission to change the world that I live in. To try and make an impact on the lives of patients undergoing similar experiences to me but at the heart of that my brain then flip flops in to patient mode, I get unwell and think what the hell is going on. Hey I would love to emigrate and live in a warmer climate and have a better quality of life. One side of my brain is like, for goodness sake get on with it you lazy lump; the other side is like – yeah right who do you think you are?

And there you have a typical patient dilemma in 600 words. Can a long term patient ever truly stop being a patient in some shape or form? All I know is that if you keep going on about how ill you are then you will probably stay ill and that is a mindset you can do something about. I mean take my 95 year old Grandma. She is one truly amazing lady but every day she will moan about an ache or pain somewhere yet we know that if you talk to her about something else she will forget about it. Then she gets diagnosed out of the blue with breast cancer and brushes it off with the bravery so many wish they could have. What is it inside your head that says ok I am going to moan about a bit of trapped wind (mind you that can be painful) yet when I get a really bad illness I am going to be a strong as anything about it?

Whoever said that being a patient isn’t easy was a genius (yes it was me :)) but being a patient then flipping to being well and then flopping back again, well that is a whole new ball game.

Till next time

x