Posted on 3:59pm Tuesday 26th May 2015
I have starting this blog post so many times over the last couple of months but have never really known how to write what I really wanted to say. In truth I have shied away from sharing my thoughts, as my battle with chemotherapy was so much harder than I imagined. For someone who is used to sharing everything about my health my chemo journey felt very personal. It just felt right to go quiet for a bit and cope privately.
Posted on 2:29pm Tuesday 5th August 2014
Not a single day goes by without healthcare in the news at some point. Whatever the story the ultimate aim is always about using the incident, the story, the report or the headline to improve health outcomes. This has got me reflecting about my own journey. Having been a patient for roughly 35 years I have thought back as to what has been the common thread that has led to my best health outcomes.
Posted on 5:40pm Tuesday 15th July 2014
It has been a while since my last post but that was for good reason. With so much going on I thought that I would take a step back and not post for a while. However the last few weeks as a patient have made me reflect and want to share a few thoughts with you.
Posted on 9:18am Tuesday 29th April 2014
I recently finished watching the brilliant BBC hit legal drama Silk. At the end of the series there was a vote for a new head of chambers and the two barristers started their speeches with the question “who am I”. This question has been swimming around in my head ever since. Who am I as a bowel transplant patient? Who am I as a long term patient? But in reality do those questions really matter? Should it just be; who am I, the individual?
Posted on 2:49pm Tuesday 21st January 2014
This is a very personal list for me. A mixture of of my own health wishes and those that I would like to see happen in healthcare. It would be great to hear if any of your views are similar to my own. So here goes.
Posted on 11:19am Tuesday 19th November 2013
Going back in to hospital doesn’t get easier just because you are a regular. If anything it gets even tougher because you know what is in store. I have just returned home after a ten day stretch and further surgery. As you would expect there is a blog post coming after my little journey but before that post that I wanted to write this particular article and share it with you. I take great pride in the fact that my care is very much a partnership between patient and healthcare professional. Empathy has been talked about as a key component in the partnership. In fact I have read many articles about the best doctors are those who show empathy to their patients. After much exploration though I struggled to find articles that talk about patients who can empathise with their doctors. We can debate why this is the case for ages but for me perhaps one reason is that we often choose to take for granted the work that our HCPs do in helping us. Whilst we all want collaboration and partnership maybe that doesn’t always extend to a real understanding of what the medics go through. I think that I am just as guilty as others in this department. That was until this particular in-patient stay. The day before I went in to hospital my surgeon and I had a very open telephone call about the surgery. Nothing unusual there except I do remember thinking that he being even more cautious than normal and very specific about each individual point and potential consequence. I knew that post-transplant surgery is inevitably more complex than pre-transplant so again I sort of shrugged it off. Arriving in hospital something didn’t feel quite right. Not about my health but about the atmosphere on the ward and the way he spoke to me. Again I was told that he would do absolutely nothing to put me in jeopardy or take any risks whatsoever. I then asked a question and all the answers to the other questions in my head became obvious. Tragically an incredibly brave fellow bowel transplant patient had passed away a few days earlier. It hits all us bowel transplant patients very hard when one of the family doesn’t make it. You see, because there are so few of us we are a family. We share the successes and collectively feel the pain. That family feeling doesn’t though just apply to fellow patients. Right in front of my eyes I was seeing the pain and upset felt by the transplant team and my surgeon. Our surgeon. Nothing that anyone could have done could have prevented this tragedy. This patient was just the bravest person you could ever wish to meet. There standing in front of me was a person who not only felt his own pain but felt the pain of every single one of us and also the pain that this patient’s family were going through. He was devastated. I tried to explain that we all know the deal when we go through this surgery. We know the risks. We also know that he cannot be at our bedside 24hrs a day. I told him that he also has a family and a life and that there is no other person or surgeon that we would want in our corner than him. Those were not empty words they were the truth. I mean it, we all mean it – he is simply the best. His response was astounding. So much so that I am trying to write it down for you as close to word for word as I can. - My family understand that I need to be here for you all. I have dedicated my life to you and I want to and need to be there for you every single minute of the day. It is my responsibility to look after you and to care for you. I feel the pain you feel and when someone passes away I have to deal with my own demons and try and find a way of dealing with it for all you!
Posted on 9:34pm Tuesday 8th October 2013
I have to start this particular bowel transplant blog with a birthday hug. Who for, well me actually. Why? Well at the precise time I post this blog I was, two years, ago coming out of theatre after my transplant surgery. Who was the first person to remember? No not me but my incredible surgeon who sent me a congratulatory text. You can’t ask for better doctor-patient engagement than that can you? I have just returned from a really interesting trip to the United States. Utah and then California in fact. Utah was a brief stopover to have a meeting and then I was on to California where I had the privilege of giving the key note opening speech at Stanford Medical School’s MedicineX conference. Together with my transplant dietician Marion O’Connor we discussed how the use of digital technologies has transformed patient – doctor engagement within the bowel transplant programme. We discussed how the use of basic technologies starting with email and text moving through to social media, blogging and finally skype clinics (yes any NHS managers reading this – Skype clinics do work and patients love them) lead to better collaboration, better engagement, better compliance and better relationships between patient and doctor but also patient to patient. More on the Stanford experience in a minute. (If you are that inpatient I will let you scroll down now) I wanted to talk about an interesting dynamic that has happened recently in my care and the impact it is still having on me as the patient. As you know I have continued to experience a plethora of symptoms ranging from basic Usain Bolt style runs to the toilet; extreme pain on the right hand side of my stomach; various joints locking at regular intervals and without warning leading to events such as the weekly ritual known as dropping the drinking glasses I am holding because the pain in the hand is so great and finally there is nightly chuck up. In fact I have got so good at the nightly vomiting that I don’t now even wake anyone up. So with those symptoms I was referred to a brilliant gastroenterologist, Dr Satish Keshev. After scopes both up and down (you get the drift), an MRE and a pill capsule test he was certain that there was potential Crohn’s activity. Now as a bowel transplant patient that really is your worst nightmare hearing those words again. However as I am on heavy immunosuppressants the choice of medications available are very limiting. Why? Well because the risk of infection is heighted being a transplant patient. So his view was resect that area as the same time as doing the other surgery. And with that news he asked me to talk to my surgeon and he would do the same. A couple of days later I speak with Anil and the words “there is no way it is Crohn’s” come loud and clear in my ear. I did manage to get the word “but” before he then went on to tell my why it couldn’t be Crohn’s and how he needed more proof. We then went on to discuss what potential surgery was needed. This bit was relatively simple. Remove the gall bladder (stones that can’t be lasered) and connect the transplanted bowel up to the top part of the stomach so that everything drains directly in to the new bowel. Pace maker I hear you cry! Well yes, it is conceivably still on the table but I have heard nothing. In true NHS administration not one single note, email, phone call (now I am being stupid) has happened so who knows. Option B was always the drainage process so that has just become option 1a.
Posted on 5:27pm Wednesday 21st August 2013
I thought that it was time I wrote down a summary of where my life was in bowel transplant land. In doing that I realised that my role as a patient was changing. Was that down to me or down actually to the changing nature of the NHS here in the UK? I will let you decide. A warning this is a long post So with a backdrop of life being so much better than it was prior to my transplant this is my current daily and weekly schedule.
Posted on 5:08pm Thursday 25th July 2013
Wow, so much has happened in my bowel transplant world where to begin? Usually I like to focus on what has been happening to my health from a physical perspective. However I want to devote this post to telling you what it has been like managing basic things such as medications from a patient perspective. Sharing my own frustrating episode surrounding my obtaining my routine anti sickness mediation highlights what is wrong with the current situation in England and why being a long term patient is about so much more than just having ongoing treatment. Crohn’s Disease, bowel transplant – pah it’s got nothing on trying to get a prescription sorted.
Posted on 8:24am Tuesday 2nd July 2013
If I am to be totally honest the last week or so since my last post has been a bit tough in my bowel transplant world. It felt a little like watching my football team QPR last season. Hoping for a run of success but sadly each match ending in defeat and subsequent supporter frustration. However unlike QPR who got relegated, my week did end on a fantastic note with a speech at the global Intestinal Transplant Symposium in Oxford.
Posted on 8:24pm Monday 17th June 2013
Aside from the ups and downs of being a bowel transplant patient these last two weeks have been a welcome change from focusing on my own health challenges. Whilst phosphate levels continue to yoyo and my medical team and I grapple with bile salt levels, bacterial overgrowth, stomach dysmotility and now gastric colic reflux. All these issues in isolation would be fine but the combined effect has not been great. The fact that I was able to attend and participate at two conferences has been a welcome relief. Attending them has also been a challenge. It has led me to reflect on one point. What is the value of a patient? I ask this question, not in the context of the fact that without patient’s healthcare doesn’t exist. That would be silly. No I ask it in relation to the value that patients bring to external events around health. In truth I believe that there should be no event without patients. Patients Included is a type of Kyte mark created by Lucien Engelen. His TedX talk sums the objectives up far better than I can. Behind all of this lies the fact that actually patients bring enormous value to events. As a patient we almost feel like it is an incredible honour to be invited and that we are the token after thought. Actually if we really value the patient then we should be the first thought. Take the organisation for one thing. Most patients if they are asked to speak are still on medications, usually are not as fit and able as others and it takes far more planning for a patient to attend and speak that anyone else. Yet when we are asked we are usually expected to travel on the same schedule as a well person. Travel to and from venues on the same time frame with no thought or consideration for what we have to go through in order to be there. Now I am not on a big crusade here to travel first class everywhere, although that would be lovely. (BA/Virgin etc – yes I would love a little pampering) No what I am saying is that if you truly value the input of a patient then show that you understand. Plan and allow for patients and what they have to go through to attend. A relaxed and less stressed patient will deliver even more value. My conference journey started by attending an event Using Social Media in Healthcare. The key note was given by Dr Mark Newbold the truly inspiring NHS Chief Executive of Heart of England. He talked about his journey in to using social media and the fact that he now posts his CEO diary on his blog. He talked about the value of social media not just as a communication function but as a way of making a difference by being truly interactive. My role was being part of a panel discussion with my #NHSSM colleague Gemma Finnegan. I talked about how to use digital technologies as part of your healthcare toolbox when managing your condition. The main thrust was my belief that using basic technology such as text, email and of course social media changes the way we interact with our healthcare professionals. To me it is obvious. Maybe that is because I am a patient. To those on the other side of the fence the word “fear” seems to engulf them and be a barrier to engagement in this way. From there I was invited to moderate a panel and be a key note speaker at Doctors 2.0 & You in Paris. I am incredibly lucky to be invited to such events. The idea of a few days in the Paris sunshine being mentally stimulated and challenged is phenomenal and the event didn’t disappoint. I had the great privilege of moderating a panel entitled Patient Designed Healthcare. The panel examined where we are today and what the future might hold. The panel consisted of what I can only describe as inspirational e-patients (Kathi Apostolidis, Liza Bernstein) and a former hospital leader now using design-thinking to inspire better staff and patient experiences, Nick Dawson. A constant theme running through all the discussion was use of social media and how to engage and influence. We debated briefly what the term e-patient meant. I prefer to be known as an i-patient (an interactive and informed patient) but that is for another day. We finished the panel with the following question. What is the role of the patient in the future? It was answered brilliantly in one word by Gilles Frydman founder of Smart Patients – “Centre” In other words the patient will be firmly at the centre of all healthcare in the future. I guess the question that springs to my mind is why is that in the future? Why are we not there now? If you value a patient then we should be at the centre. The NHS has this saying “nothing about me without me” A bit of a tick box at the moment if you ask me. My key note presentation took a somewhat different form. Twelve Imodium, antibiotics and two anti-sickness injections later and I was ready to leave my hotel for the session. I had the honour of presenting with one of the world’s leading intestinal transplant and intestinal failure dieticians Marion O’Connor. The fact that Marion treats me is an added bonus. We talked about stripping back all the talk of apps and new technology and used our talk as a conversation between patient and healthcare professional about how we actually interact on a daily basis. What it is really like on the coal face, in the outpatient clinics, on the wards and with day to day interaction. I’m lucky, our relationship and the one I have with Anil Vaidya, and my surgeon is unique. The real question is why is it unique? Why are we all not interacting like this? It would be easy to put all the blame at the door of the doctor. Believe me I still feel that they shoulder much of it through their fear of change. However if a patient is truly interactive and a patient enters their relationship with their doctor in a collaborative way then instantly the dynamic has changed.
Posted on 6:42pm Wednesday 22nd May 2013
The British Medical Journal just came out with a heading that should have all patient’s jumping for joy - Let the patient revolution begin. As one of those patients who talks tirelessly about how important the role of the patient is in healthcare I was definitely one of those smiling when I heard about the article. But then I started to think a little bit more about things. A thought that hadn’t entered my head for a very long time suddenly found itself front and centre. What if a patient just wants to be a patient? Actually what if a patient just needs to be a patient? Is that still ok? In my own bowel transplant journey this week I felt like a patient who needed some help as opposed to an e-patient or the term I always prefer to be described as an i-patient (meaning interactive in all aspects of my health care). I actually felt that it was ok to be passive and turn to my medical team for help and support as opposed to constantly wanting to be part of every decision as well as striving to help find the answers. Having started treatment for the bile mal-absorption I then underwent a CT scan to see if I had developed a hernia at the site of my stoma and where I previously had one. The results came back pretty quick to rule out a returning hernia so that was positive. From CT I then spent the day back at the John Radcliffe Hospital doing a great impression of a blocked drain that was having Dynarod drain cleaners shoved in from both ends to check for blockages. Fortunately I wasn’t awake for most of the day. Sedation in my view is not a luxury but a necessity and fortunately there was no resistance put up by the doctor. Once sedated my day comprised of a colonoscopy and endoscopy with a balloon dilation and biopsies taken for good measure. The purpose of all of this was blockage at the join of where my new transplant bowel is joined to my own bowel. This area is known as the ileo-colonic section. I am still waiting for a formal result from this day’s events but it did leave me not only feeling a little rough and sore but also a tad vulnerable again. I suddenly felt that I needed someone (in my case my surgeon) to take complete charge and help sort things out. That is what he is doing and within 24hrs I had started to receive text messages saying that he was looking in to everything. I am back in Oxford twice next week so should have some answers by then. What this week has brought home is that no matter how interactive or how positive you are, as a patient there are times when you really do simply need to be a patient. I am experiencing some ongoing issues with joint pains – bizarrely my hands, feet and back seem to lock the moment I stretch them out in any way. The suspicion is that my bone density levels are poor and possible effects of the tacromilus anti-rejection medications but we will get to the bottom of it over the coming week or two. No matter what type of patient I am my faith and trust in my medical team has never wavered. The question that I am still grappling with is whether there really is a patient revolution going on? Has technology and especially social media simply made patients more engaged and empowered? Has that has created a completely different dynamic in how healthcare gets delivered? This may well be true as is the undoubted fact that health self-management is gaining enormous traction especially with patients who have long term conditions. In that area I will just tease you a little with a new self-management hub that will launch soon. Watch out for crowdhealth – no website yet but there will be soon and it looks cracking. I’m all in favour of patient power. This slideshare really gives you an insight in to what it is all about. I do believe that patients need to take more active role in how they manage their health but sometimes there is no substitute for just wanting your doctor to look after you. Till next time x
Posted on 5:09pm Monday 13th May 2013
Posted on 8:42am Tuesday 7th May 2013
Posted on 7:18pm Friday 15th March 2013
My journey has a bowel transplant patient has taken me off in a number of directions over the last couple of weeks. Some have been great some not so good but again all paths lad back to The Churchill Hospital in Oxford and the transplant unit and my surrogate family. The route to this particular visit has been interesting though and as I sit in room 11 having just ordered a take away pizza (sorry no free advertising of any pizza chains on this blog that is unless free pizzas are on offer) for some hot food at a decent time I thought that I would tell you about the latest instalment of being a patient, bowel transplant style.
Posted on 3:12pm Monday 25th February 2013
I have tried hard this week to get my head out of bowel transplant mode and in to the space reserved for “rest of my life.” I just figured that with my head still spinning with so many things it was time for a mental clear out, a kind of spring clean of the mind. As I write this I have visions of a mini me with duster and polish sitting inside my head polishing lots of bits until they are all shiny. Just hope mini me doesn’t drop anything, that is if there is anything to actually drop.
Posted on 4:24pm Sunday 10th February 2013
This last week seems to have typified my journey through bowel transplant. When I was told that having a bowel transplant was swapping one set of problems for another I knew what I was being told but never really appreciated what that actually meant. I went in to the surgery knowing the risks and complications but at that time I hadn’t eaten for 3 years and had intestinal failureso for me there was no choice.
Posted on 11:09am Monday 28th January 2013
Sunday, 27 January 2013
Posted on 5:57pm Wednesday 9th January 2013
As the clock chimes midnight it is out with the old and in with the new except as a patient that one chime doesn’t actually make a difference does it? Or am I wrong? The turn of the year gives you a chance to set new goals, make new plans and start up new things but the one thing that doesn’t change is being a patient. Does that mean your mindset has to stay the same though – I think not! My Christmas was a bit like santa’s relationship with chimneys – lots of ups and downs. I picked up what I assume was a virus and ended up back in hospital for a few days. With me a virus seems to always lead to dehydration and with my kidney function going off quicker than a turkey left out of the fridge I soon found myself on antibiotics, a drip and with an abscess on my leg from all my injecting that has now turned in to a lovely great big hole. All of this and I just wanted to be out ahead of celebrations that had been planned. Frustratingly I missed two major deadlines, my daughter’s 13th birthday and my 21st anniversary but I did get out in time to share New Years Eve with my wife. I also managed to be around for my daughter’s bat mitzvah & disco – although not eating for 2 days to ensure I could make it through the disco was an interesting challenge. I then managed to appropriately embarrass her with my speech, which I thought sounded cool, it contained a twitter hashtag, references to facebook and everything else teenagers use these days. Perhaps it was the fact that I have more twitter followers that upset my little lady. I hadn’t really appreciated the effect that my back and forth to hospital was having on the kids until this holiday. I stupidly assumed that they took it all in their stride and that it was almost part of life yet this time it really hit them hard. I saw the odd posts that they put up, heard the reactions on the phone and then saw the look in their eyes and it really made me realise the massive affect this all has on them. I think that some of this was due to the fact that I hadn’t been an inpatient for a few weeks so they got used to having me at home and some of it was the fact that I went for routine bloods and ended up staying in so it was unprepared. Finally there was the time of the year so it was no wonder the kids and my wife got very down over the whole thing. So you see the journey of being a patient or the trials and tribulations of being the loved one of a patient doesn’t alter based on the change of a number. In essence those elements are out of your control, what can change though is what you wish for and what you are going to do to try and make those wishes come true. For 2013 what will I be doing to make my wishes come true? My biggest wish is for stability in our lives and for my wife and kids to have a year free of the upheaval that has been there for so long. What can I do to make these things happen? In simple terms I can make sure that I do everything possible to give them the normality they deserve when the times are good and just hope that when we have a few blips they remember many more good things than bad. To deliver on my wish though involves so many things some in my control and some not. I guess that herein lies so many lessons for so many of us. These are my thoughts for what they are worth. I can’t guarantee that I can follow everyone though so I would welcome your thoughts.
Posted on 6:53pm Monday 24th December 2012
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. 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 10th 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
Posted on 10:22am Monday 17th December 2012
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
Posted on 3:00pm Sunday 2nd December 2012
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. 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 programmes 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
Posted on 8:24am Monday 26th November 2012
Sunday, 25 November 2012Patient/doctor relationship, is it the ultimate trust you can have in someone? I talk a great deal about what it is like for me being a patient and specifically a bowel transplant and inflammatory bowel disease patient. Actually being a patient though isn't just about me the patient it is about finding a doctor then building a relationship like the one that I have with my transplant team and specially with the guy who is at the top of the tree my transplant surgeon Anil Vaidya. You see when you go through chronic long term illness you build up a relationship with your doctor that is quite different to most people who go to hospital. Then when you go through transplant and require long term care that relationship goes up on to an even higher level that you can imagine. It is not like a routine bit of surgery where you can often feel like just a number on a list here you really build a one to one connection and that is as scary as it is fantastic.
Posted on 5:58pm Friday 9th November 2012
Wednesday, 7 November 2012From QPR to patient compliance & a bowel transplant It was never a sending off, I mean not even the home fans around me called for it and then there was the goal. Don't get me started on the goal. I mean not only was he offside once but actually twice - the referee is a w...........onderful guy the QPR fans chanted or something similar. As you could tell I went to football last weekend. After 3 years of no live matches I went to Arsenal to see them play the mighty QPR and yes you guessed it we lost. we could clearly see offside from here :)
Posted on 8:21pm Saturday 6th October 2012
05 Oct 2012 08:54 AM PDT
Posted on 7:43pm Thursday 20th September 2012
Thursday, 20 September 2012
Posted on 9:59am Tuesday 4th September 2012
How do you define normal life? I'm pretty sure that my idea of normal life will be different from yours. When you are recovering from long term illness and major surgery the phrase that keeps popping up is "don't worry you will soon be back to a normal life."
Posted on 9:43pm Monday 20th August 2012
Monday, 20 August 2012
Posted on 3:39pm Friday 27th July 2012
Wednesday, 25 July 20125.41pm The time between blog posts seems to be getting longer. Some will say thank goodness and for those who don't I apologise for my tardiness. In truth I have been all over the place this last week or so both healthwise and also trying to get back to a normal life and develop some new avenues.
Posted on 9:25am Thursday 12th July 2012
Wednesday, 11 July 20125.15pm So much has happened over the last week in my bowel transplant world I am not sure where to start. The beginning is usually a good point I guess.
Posted on 9:27pm Tuesday 3rd July 2012
Friday, 29 June 2012 8.51pm I'm a bit annoyed with myself that it has taken another week to blog, not even any good medical excuses this time just my own bad time management. Mind you some of you may think it is a good thing, me not rambling on too often.
Posted on 11:58am Saturday 23rd June 2012
Friday, 22 June 2012 4pm It has been a bit of a funny week in my bowel transplant world. I went back to Oxford on Wednesday for an MOT but really came away with more of an oil change a few spark plugs replaced as opposed to the full service. What I mean by that is I didn't have a scope and biopsy but did have long discussions with the dietitian and transplant coordinator over changing my enteral feeding regime and trying to tinker with my medication routines. Does that make a bit more sense now? Probably not but humour me anyway.
Posted on 8:01am Tuesday 19th June 2012
Friday, 15 June 2012 10.45am I never knew that walking around with a feeding tube and ruck sack would attract so much attention from passers by. The odd glance or curious look maybe but to have adults staring at your "personal possessions" while you queue at the post office or are out walking the dog is a new occurrence for me. It's a feeding tube I scream, except I don't. In my mind I do but in reality I give a pathetic smile and carry on.
Posted on 9:54pm Thursday 7th June 2012
Thursday, 7 June 20127.21pm I can hear my eldest son making home made pizza so I thought that it would be a good time to get out of the kitchen and let you know what has been happening. On the cooking front I have had the thinnest victoria sandwich cake ever baked for me by my 13 year old son Nathan and I can smell cupcakes in the oven that my daughter has been making. So as you can see the cake update is going very well, the washing up is still a bit dodgy but it must simply be something to do with my kids eyesight as they seem to ignore kitchen surfaces full of cake mixture, cream, icing sugar or anything that resembles a mess. Just as a final cookery round up my wife is now in to baking bread so there is no shortage of food being put in front of me on an hourly basis.
Posted on 7:34am Friday 1st June 2012
After a week of eating and new found optimism in my bowel transplant world things started to go a little wrong again. Late last week the sickness returned and with it the usual concerns. Surely the botox couldn't have worn off that quickly? I mean it had only been a week since my injections and I don't recall seeing people's faces suddenly become all wrinkled again one week after their injections. I know that mine were in to my stomach muscles but surely the same principals apply? No it can't be the botox I kept saying. On the other hand when you really do not know why sickness starts up again that is the natural assumption.
Posted on 10:20pm Tuesday 10th April 2012
Physically I haven't made much progress this week but mentally it seems to be all over the place
Posted on 9:05pm Wednesday 4th April 2012
I thought it would all be sorted once I had the transplant but that seemed to open up a whole lot of new problems
Posted on 9:36pm Wednesday 28th March 2012
When is a biopsy not a biopsy? When it is looked at out of context with the rest of my bowel transplant predicament
Posted on 6:40pm Saturday 24th March 2012
The mental challenge has proved as hard as the physical one and when you have further stomach complications you just need a plan in place to keep your sanity
Posted on 9:00pm Tuesday 20th March 2012
Although everything is going well with the transplant it is the little things that cause problems
Posted on 8:00pm Sunday 11th March 2012
There hasn't been much progress of late so I have posted a few key questions that I would really appreciate getting some feedback on.
Posted on 1:00pm Monday 5th March 2012
For the first time in a long while I found myself very depressed and fed up.....
Posted on 6:40pm Thursday 23rd February 2012
A really rough day yesterday was followed by a full MOT today back at hospital...
Posted on 12:40pm Monday 20th February 2012
Changing the stoma bag should be easy but what do you do when you run out of wipes
Posted on 11:20am Friday 17th February 2012
One of the things we don't talk about is what we look like post op with all the scars. Having never norrmally cared I find myself somewhat self conscious
Posted on 8:30pm Wednesday 15th February 2012
Back on the old feed but still the same reaction what must my kids think?
Posted on 1:00pm Saturday 11th February 2012
Started a new feed, new antibiotics and new medication. A recipe for disaster so you can imagine what happened...