My bowel transplant journey continues....
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.
The last week has been a pretty uncomfortable one pain wise and it has only been in the last 48hrs that I have actually been able to stand up relatively straight. Being challenged in the height department (no, before you ask I don't suffer with short man syndrome) means that my wife is forever reminding me to stand up straight, I mean it doesn't exactly do my credibility much good when my 12 year old daughter is almost taller than her dad. Managing to stand up bizarrely also coincided with actually going through a couple of days without having an accident. Quite how the two are connected I doubt any medical genius could work it out, mean what has walking around like the hunch back of notre damn got to go with random stool action I have no idea but the timing was the same so that will do for me. It also coincided with a visit to my surgeon for a further check up.
I stood there with my top pulled up under my chin and my surgeon telling how great the scar was looking and how symmetrical my belly now looked. These conversations weren't quite what I had in mind as my life has gone on but now, hey a symmetrical stomach and a wound one of the world's leading surgeons is happy with is nothing to be sneezed at. On the car journey up I also heard that my football team had sacked our manager so all in all it was a good morning. We then got on to the topic of the future and what next. Anil has always been very good and basically telling me that I should go and do anything I want to do, to go and achieve my dreams and live my life and when things go wrong he will sort them out. In reality he has sorted things out and with that comes a confidence like nothing else you can experience. But as I said early it is also really scary. You see the question that entered my head then is what happens when he isn't around? What happens if one day he leaves, he pursues a career elsewhere and he is not there to take my call or give me the pep talk I need? He has been my surgeon, yes my personal surgeon, but he isn't is he and the transplant team are not my personal team. Marion isn't my personal dietician. No they belong to the NHS and the Oxford Transplant Unit and that is very scary.
I hadn't ever thought that they wouldn't be there for me, how dare they want to have a career elsewhere, how dare they potentially go on to greater things. Of course I don't mean that but you catch my drift. You see this whole journey is like no other and it is only when you go through a medical journey that takes you right to the edge that you really appreciate and understand how close and attached you become to those that care for you. They become your second family, the one you literally have trusted with your life, they know you like no one else, even your mum and dad can do. Going right back to that walk to theatre, holding hands with my wife Anil would have been the only other person who could truly have known how scared we were and how that walk could have been the last time we held hands.
So is it is a good thing to have such a trust and confidence in someone who may not be there one day? How do you deal with the whole doctor/patient relationship especially given what you go through together?
For me I guess my whole reason for turning to social media and for building on line relationships is where I find my answer. The world is actually so small and connecting with people is so much easier today than ever before. With technology in healthcare growing daily actually my team can be anywhere in the world and I can still connect with them. I recently watched a video of a brain operation that was tweeted live
http://youtu.be/dxJvbi6tW88 and if this is the future then should I be worried?
Connecting is one thing but could I ever imagine actually being treated by another surgeon. Right now the answer is of course no way. I don't have to even worry about that right now so I guess what I should do is exactly what he would want me to do and try and live my life to the fullest it can possibly be. Now that bit is a challenge I will take on no matter what. Do I still feel fragile most days, absolutely I do. Do I still have pains, worries and concerns, absolutely I do. Will they stop me, of course not; I just now have to tell my brain that it is ok to give things ago and if and when it goes wrong then I have the best team in the world to look out for me - wherever they may be.
Till next time
xx
Monday, 19 November 2012When Mr Armani was joined by Mr Gucci in Bowel Transplant Land
There is an old adage that a week is a long time in politics; well there should be an adage that a day is a long time healthcare especially when you are a patient. I started the week by going back in to hospital for what was supposed to be a minor and routine hernia operation. The only slight complication was that it was at the site of the stoma reversal and that made closing the site potentially more difficult.
Everything had started as a niggle; I constantly felt in discomfort and it sounded like a blocked drain every time I ate. Food would go down and as it hit the hernia site huge gurgling would start and then it was as if the drain would unblock and the contents would flood out. Gurgling became louder and louder and pain got worse and no amount of self plunging seemed to clear things. (I’m not sure that the medical term “self plunging” actually exists in the British Medical Journal but you get my drift). Sitting in the waiting room before going to theatre my surgeon and I chatted about if things went well then maybe I would go home that day. I must remind him not to choose my lottery numbers in future.
I woke up several hours later back on Wytham Ward in real agony, connected to a pain relief pump and with a drain attached to the wound. My initial pride at having the hernia described as “a corker” was soon replaced with the realisation that I couldn’t actually move properly and that the surgery had taken much longer than planned. In addition I had always prided myself on my Armani style zip that went vertically down my stomach. In truth it was just a series of scars all in the same place that have been repeatedly cut out and replaced by the next season’s style of scar. This time though Mr Armani was joined by Mr Gucci a 6 inch horizontal scar across my stomach. The wound had also required a double mesh to be used to try and keep things in place and then the skin was actually glued back in place in the hope that it will stay fixed. So not only do I have Armani and Gucci fashion accessories but I now have an arts and craft store permanently on tap to place with. If anyone is connected to Hobbeycraft then for a small fee I will advertise their wares on my body. Think of it as the new telemedicine advertising.
At home I feel that I have been walking around like quasi modo as it is proving a real challenge to stand up straight. I also picked up an infection at the site of the wound and am on antibiotics. I’m not sure whether it is the new meds, the effects of another anaesthetic or simply my bowel going “for goodness sake when will you leave me alone” but the time spent on the toilet has been huge. It can also be at any time of the day or night and I have found myself either asleep on the loo a 2am, in the shower at 3am and contemplating the meaning of life on many different occasions over a 24hr period. I am thing of putting an office in there and a camp bed then I probably won’t need to leave. Also it has crossed my mind at times to actually throw my food straight down the toilet bowl as it would save a whole lot of aggravation waiting for it to go through my own plumbing works and back out again. Surely cutting out the middle man makes sense. And following my new innovative sponsorship strategy I am a one man focus group for any toilet paper company looking to launch a new luxury brand. Andrex 3 ply are my favourites by the way J
I don’t want to paint a total picture of frustration over the last week especially as has been one monumental breakthrough. Yes folks a fridge that is now in the waiting area on the ward and can be used and accessed by patients 24/7. Up until now the only fridge I have been allowed access to as an inpatient is the one in the kitchen (let’s be clear it is not a kitchen in the sense that you and I know – it is a place where a microwave, fridge and dishwasher exists) which is constantly locked and relies on the complete kindness of nurses to get you access to it on an ad hoc basis. If the nurses are busy which invariably they are then it means getting your own food can be really challenging. This fridge is ground breaking.
This week has seen my usual blood test challenges and attempts at re-siting cannulars. Putting one in a tiny vein in my index finger was interesting to say the least and I have been working on the basis that they last around 24hrs before tissuing. I tend though to take all these things in quite a blasé fashion. In a way taking bloods or sticking in needles to difficult patients is just as hard for the doctor as it is the patient. Some run a mile and some see it as a real personal challenge, I just want to know if one of them would be brave enough to let me have a go at jabbing them. Come on, man up!!
So there you have my week in a nutshell. I made a serious of very short videos whilst in hospital. Here is the first one if you fancy a viewing and the rest will be up on my You Tube Channel.
http://youtu.be/IZG9u0EBCSo Yes I know that I am not President Bartlett or even the legendary news anchor from The NewsRoom but you can’t blame a man for trying. I mean this is reality tv on a shoestring budget. I have to write the script, act the part, be director, producer and editor all rolled in to one. What more do you want from a humble bowel transplant patient.
Till next time
