I was asked recently whether I minded the fact that everyone knew I was a bowel transplant patient and whether that would have a negative effect on work or other daily activities. I've never been afraid or shy about telling people that I had Crohns or was on intravenous feeds as I never wanted to be defined by it and I never wanted to let it stop me doing anything. Now however it is a bit different I actively talk about my bowel transplant and medical history with the aim of using my experiences to try and help. I have always talked passionately about the help that I believe patients can receive by talking to other patients (patient to patient interaction is vital in my opinion) and in order to push that on further and develop on line communities and forums I feel that it is important to be open about my own medical situation.
At the recent Stanford Medicine X conference many e-patients talked to me about their concerns for being too open about sharing their medical history with people. It is one thing being an advocate for change or promoting a cause, it is another telling the world how many times you have to go to the toilet (although it has never bothered me! In fact why am I not sponsored by Andrex yet, where is my agent?? ) Their concerns were whether it would affect them getting a job or potentially being treated differently at work and so for the first time after thinking about this and what my friend said I actually took a step back and wondered whether I was doing the right thing. Where is President Bartlett when I need him? Yes I am still on a one man campaign to get The West Wing back.
Two things then made my mind up for me. Firstly how can I claim to want to share my experiences and fight to help others if I am not prepared to stand up and tell people what has happened to me and secondly just because Im a bowel transplant patient it still doesnt have to stop me doing things I want to do. Of course I have to be extra careful, yes I have some pretty rough times and I suspect there will be more in the future but actually there are plenty of things that I want to achieve in life and just because I am a patient it doesnt have to stop me or anyone else for that matter. In reality sometimes it does get in the way and yes there are things that I cant always do but I went through this transplant to have a shot at a better quality of life and it would be such a waste if I didnt give it a go. I appreciate that isnt the same for everyone and employment legislation makes it tough on employees and employers. In reality I am not employable so I have to get off my backside and try and make things happen. So that was a very long winded way of saying that actually when you have no choice it can be liberating.
The last week or so has generally been relatively stable. Dehydration remains a constant challenge and I am back on daily water via my Mic Key tube. Urine colour is the most common lay mans way of checking whether you are hydrated and I have tended to rely on that a bit too much so my creatinine levels continue to yo yo. The anti rejection meds can also cause kidney damage so the transplant team is constantly monitoring things. Out of the blue my glucose levels also tumbled but we managed to get them back on track but the main issue has been the return of the dreaded sickness. From something that would happen once a week I am now being sick 4 or 5 times out of 7. I assumed that it was down to a change in anti sickness meds after the picc line burst but my surgeon thinks that the botox that was put in to the base of my stomach is now wearing off so next week I will be sedated and have another injection. While I am under I might well ask for a little more to take away the bags under the eyes and perhaps firm up the buttocks hey why not J?
With the anti sickness meds I have moved away from crushing the tablets and bolusing them in to now injecting them IM. It would be fair to say there is more bruising on my legs than a Mike Tyson opponent and at times they really hurt. Hopefully Mr Botox will help reduce my reliance on them. Who said life was a piece of cake? Mind you if it was mine would definitely be a Victoria sponge. Oh yes I fancy some now got any?
Away from the headaches, pains and frustrations I have been able to make some progress on some of my other passions. Like so many my experiences of hospital food leaves a lot to be desired. In the two major hospitals that I have been in one has done a rota to MacDonald's and one to Nandos as the food is so terrible. Nutritionally the standards are lower than those of food supplied in the supermarkets and I am bemused as to how that can be allowed. It is the basic right of every patient to have decent food when they are in hospital. I have been working with the campaign for better standards of food within the NHS and am incredibly proud to be the Patient Voice & Ambassador in the national campaign. You should check out the website and like our facebook page if you dont mind ( http://www.sustainweb.org/hospitalfood/) some of the facts are staggering.
82,192 hospital meals are thrown away every year untouched.
67% of hospital staff would be unhappy to eat the food that is served to patients
So yes change is needed and hopefully I can play a small part in making that happen.
Im also incredibly proud to be on the executive committee of the Oxford Transplant Foundation and a new website and social media strategy is now well underway so check it out very soon.
With The Newsroom and NCIS series finished I am at a bit of a tv void. Catching up on Downton Abbey seems to be the order of the day but I have just heard that Greys Anatomy was talking about bowel transplants and NG tubes so if anyone knows the director and they want a not so handsome extra but an old hand at NG tubes then put my name in the mix. Whilst we are on the subject of looks somehow my kids luckily ended up with my wifes genes. I was lucky enough to have this article (http://www.dailymail.co.uk/health/article-2220633/Crohns-disease-New-transplant-hope-sufferers-tube-fed.html) published in one of the national papers (Sunday Mail) today. They all definitely take after her.
So till next time stay well. My official Olympic Torch Bearer certificate just came through. A reminder that however tough things get there is always hope