Are Patients from Mars & Health Care Professionals from Venus? - Part 1

[michaelseres]

It has been a little while I know. Sometimes though the patient in me rears its ugly head again and I have to get out of blogger mode and in to being a bowel transplant patient. That is kind of a long winded apology but The Churchill Hospital, Oxford has seem a little too much of me of late.

Now don’t get me wrong I am still doing incredibly well some 16 months on from my small bowel transplant the fine tuning is a constant reminder that being a patient isn’t easy. I think the hardest part has been the constant fluctuations. I can go from no output of any kind at both ends to spending a copious amount of time on the John Terry (remember him – my pet name for my toilet) where output is best described as free flowing. This has generally been put down to bacterial overgrowth problems that I have mentioned on many occasions without the cause really being known. I have been having constant tests to get to the bottom of it all and finally a breakthrough seems to have been found.

Marion O’Connor who you will recall is my dietician and arguably one of the world authorities on nutrition in bowel transplantation suggested I undertake a bile study test known as a SecHat Scan. Apparently in a healthy person you absorb up to 60% of your bile which then helps with all absorption of your food and nutrients. Early indications on my test showed that I am absorbing less than 15% which is deemed as mal-absorption. This coupled with the fact that I am deficient in a number of vitamins and trace elements has resulted in me spending more time back at Oxford than I would like. No offence intended Anil – you know how much I always enjoy chatting to my surgeon.

After bouts as an outpatient I was eventually readmitted for a serious of infusions and stated on a course of tablets to held bind the bile sorts. My phosphate levels had dropped to the point that were told to me as “being on the floor” and my vitamin B and Vitamin D levels were also pretty depleted. So on admission I was started with a phosphate and pabrinex infusionsand then went through a daily blood regime to monitor any improvement.

I think at this point that I need to switch from patient telling a story to a quick side note to patient observing the NHS in action. You will recall that I always feel the best way to work with the NHS is to separate the incredible medical attention and treatment from the ridiculous admin. I arrived on the ward at the designated time and a room was ready. Now I’m a regular in patient – a kind of frequent flyer but with hospitals so the question I want to know is this. Why do the poor doctors and nursing staff then still have to spend ages of their time filling in forms with information on that exists already on the computer database? What can they not simply log on and update the fact that I am an inpatient and then access all my medications etc on line? Am I missing something here? The UK government states that patients will have access to all their records online by 2015. Well if we are getting online access then those records must already exist on computer so why the copious amount of form filling. It defies belief and puts more pressure on already over worked doctors and nurses. You might like a quick read of my NHSSM blog post on this whole subject. It would interesting to hear your views.

Swinging back again to me the patient (hope I didn't lose you on the way) I have been trying very hard over the last few weeks to not lose sight of how far I have come in the last three years. It is quite easy to get all consumed by the daily chore of continually coping with the ups and downs. My surgeon Anil Vaidya is very good at keeping me in the moment. Goal setting for today and not worrying about tomorrow. However if I am totally honest in my quiet moments you cannot help but think about tomorrow. The most frequently asked question in my head centres around rejection. I am acutely aware how powerful my anti-rejection medication Tacrolimus is and the effects they have on the body. When I think of rejection I cannot help thinking about how new a bowel transplant is and how little data there on long term issues.

I think that I am pretty good at blanking that out most of the time but it is amazing how quickly your mind wanders back on to the subject. I suspect that I am no different to so many other transplant patients or patients who cope with long term illnesses. Perhaps that is why I put so much value in to peer to peer support and the benefits that brings. The whole patient to patient sector is the foundation on which I am hoping to build my future workwise. How patients can help other patients. With that in mind I start tomorrow at the School for Social Entrepreneurs. This fellowship course will hopefully provide me with a fantastic environment to grow my passion into something more constructive.

A couple of weeks ago I had my first taste on the phrase that I had believed was consigned to the dark ages “what do patients really know.” I was invited to attend a clinical commissioning group strategy meeting in my area. It was a room of around 150 GPs and primary care practioners. Amazingly I was the only patient in the room. In one of the breakout sessions we got on to discussing how doctors need to invest more in educating patients. It was simply a round table conversation and I spoke about peer to peer interaction and how doctors can actually learn from listening to patients, reading patient blogs and interacting on social media. The moderator and then the GPs around the table looked at me told me that what I knew I was only a patient and then proceeded to tell me that I must be one of those nutty bloggers like mumsnet. Whilst being compared to the highly successful website mumsnet is undoubtedly a compliment (not that it was meant that way) to say I was flabbergasted was an understatement. For once in my life I was silent. I didn’t know whether to rant, to respond or whether that response even deserved a reaction. In my head I could hear myself running up and down the ladder of interference that I had learnt all about at the Centre For Patient Leadership.

For the first time ever I really thought that patients were from Mars and Health Care Professionals from Venus. And that is where I am going to end part one of this blogpost. Having not written for a while I find myself with lots to talk about so please look out for part 2 in the next couple of days.

Till then

x

[sickandsore]

Oh my goodness you really have been through the mill..I totally get your observations re the "professionals" and patients..I have not been through anything like you are going through, however over the years Ive seen many supposed "professionals" about myself (bowel problems predominantly) my daughter (autism, bowel problems, sleep disorder) my mother (multiple bowel operations,heart bypass) and yeah actually I do feel they view us the patients as quite frankly annoying, over reacting imbeciles..i agree they could learn a lot from exposure to sites like this and maybe just attempting to get their heads around the emotional impact of dealing with the symptoms of the conditions that they are supposed to help us treat/control would enhance their manner in which they approach us.

I wish you all the very best and really hope things work out well for you. x

[michaelseres in reply to sickandsore]

So lovely to hear from you and for sharing your story with me. How are you and how is your daughter now. Please send her my best. I really think that we, as patients, are often ignored yet we often contain the most valuable information that they don't use. Please stay in touch and thanks for commenting

[milly68]

I can understand a lot of what you are saying, Michael. I too have had a transplant (liver) and like you take tacrolimus, albeit I also have to take mycophenolate too. You will, sadly, always live with an element of anxiety about rejection; that's just the way it is but I think the constant hospital check ups, even just one or 2 a year, make it difficult to forget. But then again it is such a journey to have travelled, I don't don't think it's one we'd want to forget nor take this chance and opportunity for granted.

I was fortunate in so far as my consultants and doctors kept me fully informed about every detail all the way throughout but then I think my circumstances at that time meant that it was necessary. However, since then, I have had the need to go into hospital for other things and yes, like you, it is sometimes frustrating, however a lot of the paperwork and questions are about assessing you you and how you are functioning at that that particular moment in time as that can vary.

Somewhere for post transplant patients to be able to blog, network and support each other would be useful. Do you know if one exists?

Also, what are the chances of tacrolimus causing problems with the gut - just something I will be querying with my consultants at my next appointment...

Keep strong and hope you manage to get everything sorted out.

Looking forward to part 2, by the way...

[michaelseres in reply to milly68]

Hiya, great to hear from you. So we share a tacrolimus journey. The bigger issue with tac is actually not my gut but my kidneys. They seem to damage them and I am constantly on extra fluids via a button in my tummy to keep my creatinine levels right. I don't think you have to panic on the stomach front - from those us in the bowel transplant club they seem to be ok on the gut.

You are right that a post transplant blog would be fantastic. If you ever wanted to guest blog on mine you are always welcome. Otherwise then we should make it happen together.

Please stay in touch.

Michael x