Monday, 31 January 2011
Anyhow we were met by the head of transplant surgery for the intestinal unit. He was a lovely surgeon, very kind and he went through everything in great detail. He brought in some members of his team and there were five of us in total in the room.
Basically he said that an intestinal transplant was the only option for me. he explained that there are three types of transplant and that it was most likely that I would need a stomach, pancreas and small intestine transplant. The reason for this is that my stomach isn't emptying properly so there would be no point in giving me an intestinal transplant only to then find that with my stomach not emptying that it couldn't be used. He explained that the operation would take between 8 and 12 hours and that i could expect to be in hospital for around 3 months. The first six to eight weeks would be in intensive care and then on a ward and the last few weeks I would be moved to a patient flat where I got used to normal life again.
The surgeon explained that the first two weeks after surgery would be critical, then I would need to get past the one month mark and then finally past the year. If I had no rejection after one year then there would be every chance that I would cope with the new transplant.
He explained that the whole process would take about a year to recover from but in that time I should be back eating and drinking again as normal.
Apparently there are 5 different things that they look for before deciding whether to proceed. Ideally you should satisfy one of the criteria and from what he can see now I would pass on two categories.
The next stage would be to decide if we want to go ahead and we have plenty of reading matter to go through. If we decide to proceed then i would need to be an in patient for about 10 days whilst they ran a whole series of tests to determine right blood group and all my other bits and pieces so as to ensure that a match could be found. The process from this stage to surgery could be quite quick and they are not expecting me to have to wait months for the surgery.
So we now have a lot of thinking to do. We are due to go back to America at the end of Feb and we now have to think long and hard about how we would cope if I did opt for surgery there. I would be away from home for about 3 months without any real support from family and friends so its a big decision.
I will tell you more when I know but that is it for tonight. Its all a bit scary really and made me focus on how serious the surgery was. Still I know that there are plenty of people out there worse off than me so i shouldn't really grumble.
This afternoon we are off to Oxford. Thanks so much for all your kind good wishes. I will keep you posted when I get back. We are both excited and nervous all in one. I would desperately like to have the transplant here in England for all sorts of reasons but I am not sure that its going to be possible, but lets wait and see. You can google and google forever and you come up with so many different reasons why I should have it here or not as the case may be. At least we will hear things from the horses mouth and we can start to make decisions.
We do have appointments scheduled for America and will start to look at booking that trip soon. We just wanted to see what happens at Oxford first.
Wow, I never expected to have to be in this position, its actually very hard to keep spirits up and stop having too many down times. I know that is also the same for my wife. One minute you feel like life is a bit normal and the next minute you remember this nightmare bubble that you are living in. Oh well at least there is light at the end of a long tunnel.
Will be in touch very soon.
Sunday, 30 January 2011
Nothing much to report on the health front so far. usual start to a day, just wish that i could get used to beginning my day still feeling knackered. Its not much fun and you would think that I would be used to it by now but unfortunately not!
Have got my parents popping round later which will be a deep joy!! usual questions about my health that I have answered a million times oh well I know they care but why does it seem that parents ask those questions that rile you, I wonder if i do that to my kids, I would hope not but I suspect that I do.
Anyhow its the build up to our first tranbsplant meet tomnorrow so I will report back soon with more news.
Saturday, 29 January 2011
I actually look forward to the early afternoon sleep best as i can just about keep going till then but the hour or so that i have after lunch time is wonderful.
I recently found out that i have an appointment at the Radcliffe Hospital in Oxford on Monday afternoon. This will be my first meeting with a transplant team which is both exciting and nervous all in one. Its something that I have known would be coming but somehow when its in the distance its something that you can continue to think about and talk about without it almost feeling real. Hopefully by Monday afternoon we will have an idea of how this all works, what are the pros and cons and hopefully I can then answer all the questions that keep coming my way.
At the same time we have also been asked to go back to New York and see the head of the transplant unit at the Mt Sinai hospital as well as seeing the head guy at Georgetown University Hospital. We should be able to do this trip in early March so that by mid march we are in a position to make a decision as to where we can have the surgery. Of course the UK would be so much easier but from all the research we have been doing it is obvious that perhaps they don't have as much experience as the teams in America. Still we will soon see for ourselves and can make the call.
Of course if we decide that the USA is the way forward then a whole host of complications come up including funding, will I miss the family support etc etc so lets just see.
Am not up to much today, we are seeing friends early evening which will be nice. We haven't tended to make many arrangements over the last few months but for now its all about trying to have as normal life as ever.
With that in mind I am still trying to get some consultancy work whilst I am at home. For those of you who don't know my only really area of expertise is in licensing and merchandising and I have been privileged to have worked on some great projects before. If anyone is interested then www.michaelseres.com gives you a few details. However finding work has not been easy as I cannot really travel to clients so if any of you have any ideas then please shout in my direction.
That's about it for now, see you later.
Friday, 28 January 2011
Aaron, my eldest son has just come back from school and the other two will follow soon, so it will be a full house for tonight's dinner. Will catch up with you a little later
Let me tell you a bit about myself. I suffer from Crohn’s Disease and have done so for thirty years. Crohns in case you don’t know is an incurable inflammatory bowel disease – if you want to know more then look it up but basically it buggers up your intestine causing severe ulceration and blockages. These blockages are usually treated with drugs but it that doesn’t work then surgery is required. Crohn’s causes you to spend half your day on the loo and the other half thinking you need the loo and throw in a very bloated stomach, continual tummy cramps then you get the picture – ya!
I have grown up with Crohns and it has never really bothered me. It’s just been part of my life until these last few months. Up until this last surgery I really felt that having crohns was simply an inconvenience. It was something that required me to take tablets every day and have fairly regular surgery but I always recovered and just got on with things. This time it’s different. Later on I will tell you what life was like growing up with crohns, that is if you are interested.
So why is it different this time – I’ll tell you why, for the first time in my 41 years (yes I really am that old despite seriously youthful and good looks) I feel like a patient and I feel like someone who has a long term incurable disease. I actually feel that I am not going to get back to normality but am just going to have to adjust and cope with life and that is a very different thing to recovering and then just getting going again. For as long as I can remember surgery for me was a way of life, it was something that required hospitalisation but then after a while I got up and got back to normal and forgot about it. This time its different, I have crohns disease and I have had to wake up and get a dose of reality, my life is going to change whether I like it or not.
Last feb (2010) I had my 11th bowel surgery and just assumed I would recover as usual. Unfortunately I didn't and over the coming months it became clear that my bowel (intestine) was not functioning properly. By April I had been put on an intravenious feed called TPN. This stands for total parenteral nutrion and for 14 hours a day I am fed through a machine as my body cannot tollerate me taking food in the normal way. This was supposed to be a short term situation and I had further surgery in September with the aim to sort out any problems in my bowel so that I could go back to a bit of normal life.
Again this didn't happen and from that day until now I have had intestinal failure.
By December 2010 I had spent the best part of 9 months in hospital and we were all going stir crazy. I decided that it was time to get a second opinion and my wife and I went off to New York to meet the team at a world renowned hospital there. After extensive chats, review of my notes and an examination the doctor decided that the only way forward would be to have a small bowel transplant. Wow we were shocked. The doctor explained that he would normally have hoped to have given me a menu of options but unfortunately there was nothing more he could offer.
My wife and I took this diagnosis back to my team in london and expected a difference of opinion. What we actually got was complete agreement and from nowhere we suddenly had two highly eminent medical teams agreeing that I needed a transplant.
So now we are at the start of the journey and I intend to keep you posted as to how it goes. I am going to Radcliffe Hospital in Oxford on monday and then in early march i will be going back to New York to see their transplant team and also to Washington to see the world renowed team at Georgetown University Hospital. At least by mid March we will have seen three top teams and then we can make a decision.
So that's enough about me and my story for today. Will keep you posted with more information soon.