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
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