05 Oct 2012
The thing about recovering from a bowel transplant is the unpredictability; you are fine and then before you know it you are back in a hospital bed. I woke up feeling like I had the flu; you know that achy feeling, joints hurting and a bad headache. I never get headaches or at least I only get them when QPR lose (all the time at the moment), when I forget to sky plus The Newsroom and when the dog doesn’t stop barking at a squirrel climbing a tree that he has absolutely zero chance of ever catching. With a temperature that would spike I was admitted back to my “other” home the Transplant Ward.
It turned out not to be anything particularly troublesome just a viral infection that wiped me out and required another set of antibiotics. With my blood markers off kilter and my creatinine climbing it meant a stay of over a week.
As you could read from my last post I had been going through a bit of a psychological dip and with this hospitalization on top I found it harder to snap out of this particular blip. On top of it all my picc line burst in two places. It became blocked (which really annoyed me) and then in trying to flush the line clear it burst. I knew deep down the moment it happened that they would not be putting another one in. It is a very real potential source for infection. Boy was I gutted though. It meant that I had to take my anti sickness meds in a different way. This time it was by crushing them and injecting them through my peg/j (feeding tube in my belly). To say they do not have the same effect is an understatement of epic proportions. I knew that I would have to be weaned off them at some stage but this felt like I was going cold turkey and I really don’t like cold turkey (it’s too tough and hard to chew). As I write this I am still taking my anti sickness that way although I am being sick now at random times so if you are reading this Lydia (yes another reveal – Lydia is the intestinal transplant coordinator at The Churchill), can I have the line back please!!
I also knew that 28th September was looming and I was due to have a date with San Francisco. Should I stay or should I go? (Great lyrics for a song by the way if you ever want to use them?)
Ultimately the decision lay with my transplant team and primarily with my surgeon Anil Vaidya. There I said it!! Yes he is the incredible man I have been talking about without revealing an identity. I’m taking the view that if you know me by know then you know the hospital where I had the transplant so figuring out his name does not really require an IQ of Mensa proportions. On the Tuesday before he told me that I should make the trip. He said that he was entirely confident that if I ran in to trouble he could sort it and after all I was going to one of the finest medical institutions in America. To say I was delighted would be an understatement. Perhaps only the news that The Newsroom has been commissioned for another series or that The West Wing is returning would have brought a bigger smile to my face.
So, just over 48hrs later and with the kids safely deposited with family and friends we flew to San Francisco to attend a conference at Stanford University School of Medicine called Medicine X. I was privileged to have been selected as an e-patient scholar and this was my first ever conference I have attended in my capacity as a patient.
The flight was fine although I loved watching people’s faces as I did my meds and connected up my tube to stay hydrated during the flight. It is the look of intrigue mixed with the “should I be worried about him?” that is so fascinating.
Justine and I arrived as Stanford mid afternoon, which was 10pm UK. Usually that would be anti sickness and meds time but I knew I had to adjust my routine whilst there so I held off as long as I could. Time difference doesn’t just play havoc with your body but you also have to work out very carefully what time you take your pills especially the anti rejection ones. I know I can’t miss a dose yet taking them at the wrong times is also not great. Oh the joys of being a patient.
Walking in to the conference was for me a real defining moment in recovery. In less than a year I had gone from bowel transplant to being at Stanford, mind blowing really. The conference itself was attended by a combination of patients, medical professionals, healthcare providers and pioneers of cutting edge technology that was being used or about to be used in healthcare. It was full on leaving my hotel at 6.30am and often not finishing at the conference until 6.30pm but I loved every minute. I knew it would be knackering and I knew I would feel rough at times but I desperately wanted to be there so I also knew I needed to just get on with it.
It was one of the most inspiring, informative, educational and fun experiences I have been lucky enough to have. My brain is still aching from consuming all the information; mind you it hasn’t been properly used for so long I am surprised it remembered what to do. (a bit like the QPR defence, it hasn’t known what to do all season) I listened to other e- patients tell their stories, share their experiences and explain how they have used social media to build communities, gain greater knowledge and really be an integral part of their own healthcare plan. They explained how by using their own experiences they have become a vital ingredient in the overall healthcare policies of hospitals, medical professionals and healthcare providers. Patients are right slap bang in the centre. On top of this I learned about the impact that social media and the digital developments in healthcare. From mobile apps to new websites to new technologies speakers explained how this was all focused around the patient playing a key part in health.
I met some incredible people who will undoubtedly become friends as well and hopefully by sharing my story I was able to provide a small insight in to what I am trying to do and what it has been like going through a bowel transplant.
After the conference we had a couple of days before catching the flight home so rested up and did a typical tourist tour around downtown San Francisco. The best bit was waking up to sunshine each day. It’s amazing how much better you feel with the sun on your back; yes I was careful, loads of sun block, cap at all times although much to the astonishment of my wife I did actually venture downstairs in shorts. I hate showing my legs, not I might add because I hadn’t waxed!!
So with presents bought for the kids it was back to London and yes rain. I’m looking out the window right now and it is pelting. Even the dog is depressed.
If there is one thing that I wanted to convey to it is this. No matter how tough things are as a patient try and live your life as well. None of us know what is around the corner. I would never have gone had my surgeon said no but he didn’t he said yes and I went. Believe me if I can then you can, may be not today and maybe not tomorrow but one day.
Till next time