On Friday this blog will end. Why? Well I have been thinking hard about this. The primary purpose of this blog was to record my progress through my treatment for my 3rd kidney transplant and the new protocol of desensitization.
This Friday will mark the 3 month mark since I have had the transplant and for me this is when I feel that I have become a normal transplant patient - the doctors said this occurred at the 6 or 8 week mark. I feel that keeping the blog going indefinitely misses its aim.
I will continue to write a blog but this will become a bit more diverse focusing in the beginning on things like charity work, my london marathon efforts, news and events in the renal field and a "effort to promote healthy living and lifestyle in dialysis and transplant patients."
I will write later in the week where this can be found.I would like to take the opportunity to thank all those that have made it possible to be writing this now, to all those that have supported me and the charity work and wish you all happiness.But for now "live life and then give life"
Tuesday 22 January 2008
Friday 18 January 2008
Thoughts and breaking the emotinal bubble
I went to the beach again in the wind and rain. I spent a couple of hours there just walking and thinking about things. I am finding at the moment that a lot is going on and this is breaking through my self induced "emotional bubble".
Let me try and explain - although I am not sure I completely understand myself. Before the transplant when I was on dialysis I had my protective emotional bubble working, I have developed this over my life time as a self protective system too (I think) prevent me from getting depressed and worried. Basically my mind and emotions can only go to a certain point and then I hit the emotional bubble that I don't let my brain enter - this region is a dangerous zone and would cause myself much sole searching and worrying. This bubble is easy to live in but does tend to keep people at a distance and tends to stop ambition and desire.
Now that I am getting back to "normal" I have to start re-exploring outside the emotional bubble. This is hard - it is almost like you have to recondition your mind and allow emotions and thoughts into your mind that you have not allowed for over 2 years - I realise that this can be difficult for some people around me.
Some people might say why go outside the bubble - well I know that life outside the bubble is more challenging but very necessary to live a normal life. At the moment everything outside the bubble seems to be "concentrated".
I think a good analogy is this. If you eat bland food for a week and then eat food with flavour the taste is so much stronger than when you were used to eating that food. This is what I am finding at the moment, that the challenges and paths I am setting myself at the moment seem to be highly significant and challenging to my emotions. I tell myself that I am less than 3 months from the transplant and all the treatment I went through but my drive to get going and propel my life forward in all directions is strong. It is a weird sensation and actually pretty tiring.
For me it is important to try and explain this as I am sure that many people will go through the same type of thing (and many people will do it). My aim is to try and use this time to establish a good path with a stable, happy mind.
When I was a child in hospital I always remember having this thought - that they can do anything to my body but it is the mind and mental state that is actually the most important thing to oneself.
If I separate myself from the above and look at it as an outsider I find it fascinating that one can condition your brain to operate within a bubble that can make you stay relaxed and happy but not receptive to the emotions, actions, drive and thoughts that occur outside the body. When you operate outside you actually find that you become sad, stressed etc a lot more than when you are in but you also get the good benefits of operating outside the bubble.
I am surprised that I have not written about this before as I actually believe it explains a massive amount about me. Good and bad!!
Let me try and explain - although I am not sure I completely understand myself. Before the transplant when I was on dialysis I had my protective emotional bubble working, I have developed this over my life time as a self protective system too (I think) prevent me from getting depressed and worried. Basically my mind and emotions can only go to a certain point and then I hit the emotional bubble that I don't let my brain enter - this region is a dangerous zone and would cause myself much sole searching and worrying. This bubble is easy to live in but does tend to keep people at a distance and tends to stop ambition and desire.
Now that I am getting back to "normal" I have to start re-exploring outside the emotional bubble. This is hard - it is almost like you have to recondition your mind and allow emotions and thoughts into your mind that you have not allowed for over 2 years - I realise that this can be difficult for some people around me.
Some people might say why go outside the bubble - well I know that life outside the bubble is more challenging but very necessary to live a normal life. At the moment everything outside the bubble seems to be "concentrated".
I think a good analogy is this. If you eat bland food for a week and then eat food with flavour the taste is so much stronger than when you were used to eating that food. This is what I am finding at the moment, that the challenges and paths I am setting myself at the moment seem to be highly significant and challenging to my emotions. I tell myself that I am less than 3 months from the transplant and all the treatment I went through but my drive to get going and propel my life forward in all directions is strong. It is a weird sensation and actually pretty tiring.
For me it is important to try and explain this as I am sure that many people will go through the same type of thing (and many people will do it). My aim is to try and use this time to establish a good path with a stable, happy mind.
When I was a child in hospital I always remember having this thought - that they can do anything to my body but it is the mind and mental state that is actually the most important thing to oneself.
If I separate myself from the above and look at it as an outsider I find it fascinating that one can condition your brain to operate within a bubble that can make you stay relaxed and happy but not receptive to the emotions, actions, drive and thoughts that occur outside the body. When you operate outside you actually find that you become sad, stressed etc a lot more than when you are in but you also get the good benefits of operating outside the bubble.
I am surprised that I have not written about this before as I actually believe it explains a massive amount about me. Good and bad!!
Thursday 17 January 2008
after life
It surprises me that lots of the conversation about the opt out option of organ donation rotates around the idea that people dont want to donate organs because they might need them or that perhaps they are not dead. Do some people expect to be continued to be fed, pumped with oxygen etc even when they are declared clinically dead. Upon burial or cremation do they expect to survive under 10 ft of soil or the cremation process. I guess that if you are not dead when you are dead - having an organ removed will probably be the least of your worries. In my opinion this reason for not donating is not a strong one.
Met up with an old friend last night (he has become a hair dresser or something similar, sorry mate but I promised I would would be honest) it was good to catch up with him and to realise how this blog has been read by people who I did not expect to read it - and wonder how they discovered it. I am wondering how I should keep the blog going, I guess the angle is to try and keep promoting kidney research and donation plus updating on my progress.
Any ideas?
Met up with an old friend last night (he has become a hair dresser or something similar, sorry mate but I promised I would would be honest) it was good to catch up with him and to realise how this blog has been read by people who I did not expect to read it - and wonder how they discovered it. I am wondering how I should keep the blog going, I guess the angle is to try and keep promoting kidney research and donation plus updating on my progress.
Any ideas?
Monday 14 January 2008
Blood tests and press
I felt todays bloods were important - as the previous weeks had begun to show signs of creatinine creeping up which is not what you want. Todays creatinine was back to 123 which is good. I did little exercise on the weekend and thus expected the creatinine to drop if the kidney function was still good. So good news.. I think I go back in a week.
I was contacted by UK transplant to be a spokesperson for the opt in and opt out idea. I am happy to do this but may not be the best as I am still deciding my stance. I do think that a opt out policy makes sense as this means that the 80+% who would donate organs are then covered. (People tend not to think about death when they are well and this is actually the time when you need to think about it for deciding if you want to donate organs upon death. My reservation about the scheme is that your body is your body and does not belong to the state or another individual. I wish that the whole debate is kept away from prime ministers trying to make headlines forcing other parties to oppose or make some type of comment. This type of debate should be handled with more skill than the government can do.
If the opt out system is introduced it will mean that more organs become available and more people can live nearly normal life. But the system must be easy to opt out and have safe guards.
This week I start to train for the marathon which will push my creatinine up.. but I have to start at some point.
I was contacted by UK transplant to be a spokesperson for the opt in and opt out idea. I am happy to do this but may not be the best as I am still deciding my stance. I do think that a opt out policy makes sense as this means that the 80+% who would donate organs are then covered. (People tend not to think about death when they are well and this is actually the time when you need to think about it for deciding if you want to donate organs upon death. My reservation about the scheme is that your body is your body and does not belong to the state or another individual. I wish that the whole debate is kept away from prime ministers trying to make headlines forcing other parties to oppose or make some type of comment. This type of debate should be handled with more skill than the government can do.
If the opt out system is introduced it will mean that more organs become available and more people can live nearly normal life. But the system must be easy to opt out and have safe guards.
This week I start to train for the marathon which will push my creatinine up.. but I have to start at some point.
Sunday 13 January 2008
Organ consent
The press are full of a plan to change the opt in system to a opt out organ donation system. The basic reason for this is that people currently have to opt in and tell their families of their desire to give organs after death - basically many people don't get around to it, they may then have an accident die and their family and the doctors have no evidence that they wanted to donate organs and thus the organs are not used.
The idea is to have a system that presumes people will donate unless they opt out. This to me makes more sense as people who feel strongly that they don't want to donate (which I can understand) will make a point of opting out and the rest will stay opted in and their organs will be used if they die and are suitable.
I do think it a shame that Gordon Brown has tried to steal the limelight on this - it puts bad publicitiy on it straight away. Many of the discussion boards - comment about Gordon Brown rather than the idea which is a shame.
I have been asked by UK Transplant to be a spokesperson for this campaign.
The idea is to have a system that presumes people will donate unless they opt out. This to me makes more sense as people who feel strongly that they don't want to donate (which I can understand) will make a point of opting out and the rest will stay opted in and their organs will be used if they die and are suitable.
I do think it a shame that Gordon Brown has tried to steal the limelight on this - it puts bad publicitiy on it straight away. Many of the discussion boards - comment about Gordon Brown rather than the idea which is a shame.
I have been asked by UK Transplant to be a spokesperson for this campaign.
Saturday 12 January 2008
Old friend
The amount of money people are donating to my charity raising effort is brilliant. Thank you all so much. I had a donation recently from an old school friend which brought back memories from when I had my second transplant at the age of 11. I basically missed the first year of school because I was in hospital. When the transplant did arrive - saving my life - I went back to school. The school had said I should stay back a year because I was behind everyone else - I disagreed and said give me the end of year exams and see how I do. I proved the school wrong and came in the top five for science, maths and english. I think that was the heighest I ever came.
When I got back to school my old primary school friends were amazing and I still remember how I was basically a member of every peer group becuase all my old primary school friends told their new friends that I was to be accepted and what had happened to me. Due to the steroids I had to take and the steroids I still take my face carries fluid and I have largish cheeks. This from time to time instigated people to try and bully me - but this never lasted long as my friends stood up for me. I remember one time when I was playing football on the tennis courts - I was not bad at sport even if I was at the time smaller and less developed than the others. But for some reason one of the other people on the tennis court (who was useless at football) turned on me and started to push me and laugh at me. One of my friends (a very placid and utterly nice guy) got this person by the neck and lifted him up against the fence and said if you ever touch or call "my friend names" I will see that your life is miserable for ever at school. I never had trouble from that guy again and when I see him in the local area he moves away sheepishly. I am still good friends with the guy who stuck up for me.
I heard a song on the radio yesterday and it all most made me cry. I have a lot going on at the moment in my life which is all mostly good. This song brought back good old memories of a gig I went to a few years ago, it also makes me think of future visions of life and emotions, it reminds me of the beach, it reminds me of dancing, it reminds me of the outdoors, it reminds me of wine and cheese, it reminds me of skiing through virgin powder with blue skies and good friends, it reminds me of driving through a desert, it reminds me of a beautiful girl, it reminds me of hitting the perfect golf shot, it reminds me of my old dog (ex) running towards me with a happy face and muddy paws, it reminds me of kicking leaves as a young child with brother and parents. It reminds me of emotions and inspires new (is that not what a song is meant to do?)....
The band is goldfrapp and the song is called A and E. http://www.myspace.com/goldfrapp
If you want to know what makes me almost cry then listen to it.
Bristol City have gone second - will they be in the premiership next year?
When I got back to school my old primary school friends were amazing and I still remember how I was basically a member of every peer group becuase all my old primary school friends told their new friends that I was to be accepted and what had happened to me. Due to the steroids I had to take and the steroids I still take my face carries fluid and I have largish cheeks. This from time to time instigated people to try and bully me - but this never lasted long as my friends stood up for me. I remember one time when I was playing football on the tennis courts - I was not bad at sport even if I was at the time smaller and less developed than the others. But for some reason one of the other people on the tennis court (who was useless at football) turned on me and started to push me and laugh at me. One of my friends (a very placid and utterly nice guy) got this person by the neck and lifted him up against the fence and said if you ever touch or call "my friend names" I will see that your life is miserable for ever at school. I never had trouble from that guy again and when I see him in the local area he moves away sheepishly. I am still good friends with the guy who stuck up for me.
I heard a song on the radio yesterday and it all most made me cry. I have a lot going on at the moment in my life which is all mostly good. This song brought back good old memories of a gig I went to a few years ago, it also makes me think of future visions of life and emotions, it reminds me of the beach, it reminds me of dancing, it reminds me of the outdoors, it reminds me of wine and cheese, it reminds me of skiing through virgin powder with blue skies and good friends, it reminds me of driving through a desert, it reminds me of a beautiful girl, it reminds me of hitting the perfect golf shot, it reminds me of my old dog (ex) running towards me with a happy face and muddy paws, it reminds me of kicking leaves as a young child with brother and parents. It reminds me of emotions and inspires new (is that not what a song is meant to do?)....
The band is goldfrapp and the song is called A and E. http://www.myspace.com/goldfrapp
If you want to know what makes me almost cry then listen to it.
Bristol City have gone second - will they be in the premiership next year?
Friday 11 January 2008
Creatinine jumping around
It has been a week of visiting hospital. Went to routine bloods on Monday and all seemed good. Had a call late on Tuesday to say that they wanted me back on Thursday to check creatinine as this had risen and that I should change my tack levels to reduce. I went back on Thursday and asked them to do urgent bloods - these turned out to be higher again. There was a little bit of confusion of what to do but it was decided that I should either return Friday or Saturday for more blood checks with the prospect of a biopsy and scan and potential hospitilisation.
I went back on today - and fortunately my creatinine had come down a little - the doctor believes the rise is down to more physical activity etc. I go back for more bloods on Monday.
Apart from that the week has been fine - went for a walk with a friend on Tuesday past our old primary school and down into Lyme Regis. Also been watching the Chicken Run series that is based in the local town. I watched it with someone who has good knowledge and personal interest in the river cottage company and brand. I found it an interesting and informative programme, I felt that some of it was actually very funny with some "almost" sketch scenes. It will be interesting to see how over the next six months the amount of sales of free range chickens rises much.
I am looking forward to a hopefully quite weekend in which I am going to do "not much".
I went back on today - and fortunately my creatinine had come down a little - the doctor believes the rise is down to more physical activity etc. I go back for more bloods on Monday.
Apart from that the week has been fine - went for a walk with a friend on Tuesday past our old primary school and down into Lyme Regis. Also been watching the Chicken Run series that is based in the local town. I watched it with someone who has good knowledge and personal interest in the river cottage company and brand. I found it an interesting and informative programme, I felt that some of it was actually very funny with some "almost" sketch scenes. It will be interesting to see how over the next six months the amount of sales of free range chickens rises much.
I am looking forward to a hopefully quite weekend in which I am going to do "not much".
Tuesday 8 January 2008
Weekend
I had a good weekend with lots going on. The football was really good fun - Borough won and I only saw 1 out of the 2 goals but that did not matter. It is the first time I have been out with the "lads" since the transplant. Quite a lot of bear was consumed over the day with much hilarity.
I did find that I was pretty tired by the end of the day and slept well.
I did find that I was pretty tired by the end of the day and slept well.
Friday 4 January 2008
Football Time
I am off to see the football tomorrow. The first time I have gone to a game featuring a premiership team - going to the FA Cup game between Bristol City and Middlesborough
I am really excited about the football and going out in Bristol with friends afterwards. I am then planning to go orienteering on Sunday nr Weston Super Mare. This will be the first event I have been to since the transplant - I am not going to push it but just want to get out into the forest and read a map.
Interestingly I am watching the New Big Brother with a load of young talented people. I hope that this programme is a success and that all the young people watching it recognise that these young people have varied ambitions and skills and that ambition is not just to become a footballer or singer. I will not be watching it but "good" effort Big Brother a nice twist - lets hope it works and shows young people as talented, ambitious people....
I am really excited about the football and going out in Bristol with friends afterwards. I am then planning to go orienteering on Sunday nr Weston Super Mare. This will be the first event I have been to since the transplant - I am not going to push it but just want to get out into the forest and read a map.
Interestingly I am watching the New Big Brother with a load of young talented people. I hope that this programme is a success and that all the young people watching it recognise that these young people have varied ambitions and skills and that ambition is not just to become a footballer or singer. I will not be watching it but "good" effort Big Brother a nice twist - lets hope it works and shows young people as talented, ambitious people....
Wednesday 2 January 2008
Running
Braved it. Did my first run today only 1.6 miles with half running and half walking. I was very pleased with my current level of fitness - I felt pretty strong and my aerobic capacity was good even in the 3c heat.
I did find that my legs got tired after a while which seemed to be the biggest problem - I am also carrying extra weight about 7 kg (12%) increase since the transplant. This does make a difference and I need to convert that to muscle. I would ideally like to be about 70kg rather than 72.5kg.
I may go for a longish walk tomorrow - it is predicted to snow.
I did find that my legs got tired after a while which seemed to be the biggest problem - I am also carrying extra weight about 7 kg (12%) increase since the transplant. This does make a difference and I need to convert that to muscle. I would ideally like to be about 70kg rather than 72.5kg.
I may go for a longish walk tomorrow - it is predicted to snow.
Getting stuff done and keeping the mind occupied
I have spent the morning working out how to set up a charity and trying to get that in motion. It is an interesting idea. I have also been thinking about trying to set up a young persons renal support group that largely uses the internet. I recognise how hard it is for kidney patient groups to cater for all individual and all ages. Often it is the patients who are not members that actually need the support and encouragement.
My aim is to set up a group that promotes positive living and lifestyle taking into consideration health. I also want the group to be more dynamic, using the Internet "community" sites to provide support. I am in the process of contacting a number of people about helping in the initiative. If anyone thinks they can help or has an idea or comment please use this blog comment suggestion or contact me directly. I would like this group to become part of or work with the current kidney patient group but just be a little more focused on the younger generation that have different pressures to people who go into renal failure later in life.
I am debating if I should go for my first run since the transplant, I think I am over my cold and cough. The only problem is that it is cold outside and it is never a good idea to start running when it is freezing as your muscles need a few runs to stretch and recondition helping to prevent injury.
My aim is to set up a group that promotes positive living and lifestyle taking into consideration health. I also want the group to be more dynamic, using the Internet "community" sites to provide support. I am in the process of contacting a number of people about helping in the initiative. If anyone thinks they can help or has an idea or comment please use this blog comment suggestion or contact me directly. I would like this group to become part of or work with the current kidney patient group but just be a little more focused on the younger generation that have different pressures to people who go into renal failure later in life.
I am debating if I should go for my first run since the transplant, I think I am over my cold and cough. The only problem is that it is cold outside and it is never a good idea to start running when it is freezing as your muscles need a few runs to stretch and recondition helping to prevent injury.
Tuesday 1 January 2008
New Year and moving forward.
I am going to start this post with a massive thank you to everyone who has supported and continues to support me. I am not very good at saying thank you - but I am very appreciative of all the support I have had particulary over the last 6 months. This includes the medical staff, my friends, my parents friends and families, my family and anyone else who has just been their. It has been a great help and given me strength to feel that support and to hear and read words of comfort and understanding. So Thank you all and I hope that you all have a brilliant, fantastic 2008.
Is is now 2008 - I wonder what this will bring. It started well standing on the North Cobb wall in Lyme Regis seeing in the New Year with friends. A enjoyable if not slightly weird New Year.
Went for a walk with a group of local family friends - amazing day with great views across the sea and coastline. See photos at end of post. Felt pretty good in myself - and for the first time felt that my legs and lungs had some real power back in them which suggests to me that I can start doing some small amounts of running and gradually build it up over the next month.
Life for me is now starting to change - for the past 2/3 years I have really had to pass time waiting for the treatment and transplant. I am now in the mood to start getting things achieved in all aspects of life and have already made a few decision about the next few months that have been positive. I am still of course mindful that it is early days with the transplant but as my doctor says the kidney (at present) is operating as a normal persons kidney would.
Over the next week I am aiming to get a lot done including working out what needs to be done to set up a charity, getting and raising awareness for the London marathon and things that can be done beyond that.
I am also going to start looking for work. I have been advised not to start teaching again until September but will start doing private tuition in Science and IT. I am also going to look for a job in the local area - ideally part time 3 days a week.
I had a number of text message from my friends who are on dialysis and had to dialyse last night. I was on the beach having a good time, being able to drink (in terms of as much liquid as I wanted) and alcohol without feeling instantly ill and bloated. I did spend a moment thinking about them on the machines and how dialysis does effect your life in a lot of ways - mostly in the restrictions it puts on you. This does change the way you feel about life, about close friends and loved ones - at the moment it is making life for me more vivid and focused in terms of experiences. My last few years on dialysis (I think) has changed me in a lot of ways. It has made me more understanding and more patient - I also feel more relaxed around people.
I have also found that this blog has helped loads - it has helped because people who read it have an understanding of what is going on and where I am up to. This makes it easier to talk about the transplant and treatment. Previously - I have often found that people struggle to know what to say and ask (I have always been pretty open about the treatment I am undergoing etc) and the blog allows me to share that with people who are interested. It has made it a lot easier over the Christmas party period and among my friends. Interesting when I went to the local gathering on Christmas Eve in Lyme - the pub had about 200 people in it of which I probably knew 120 of them. So many friends (who I may not have seen for years) came up to me and knew what was going on and felt easy in what to say. I put this down to 2 things - both due to the Internet. Firstly this blog and secondly facebook. I believe that social sites are revolutionising communities already. They reconnect old and new communities and provide a link between people. I think that most people want to feel and have a support network of friends around them and want to feel that they belong to a community (what ever that is) facebook provides this - it provides news (gossip) on what people are up to. I think that we are just seeing the effect of these community websites are having and truly believe that they will begin to start bringing communities and like minded people together.
Of course their are a number of precautions and risks to community facebooks and people do need to be considerate of others feelings, beliefs and actions but if used wisely then great.
Is is now 2008 - I wonder what this will bring. It started well standing on the North Cobb wall in Lyme Regis seeing in the New Year with friends. A enjoyable if not slightly weird New Year.
Went for a walk with a group of local family friends - amazing day with great views across the sea and coastline. See photos at end of post. Felt pretty good in myself - and for the first time felt that my legs and lungs had some real power back in them which suggests to me that I can start doing some small amounts of running and gradually build it up over the next month.
Life for me is now starting to change - for the past 2/3 years I have really had to pass time waiting for the treatment and transplant. I am now in the mood to start getting things achieved in all aspects of life and have already made a few decision about the next few months that have been positive. I am still of course mindful that it is early days with the transplant but as my doctor says the kidney (at present) is operating as a normal persons kidney would.
Over the next week I am aiming to get a lot done including working out what needs to be done to set up a charity, getting and raising awareness for the London marathon and things that can be done beyond that.
I am also going to start looking for work. I have been advised not to start teaching again until September but will start doing private tuition in Science and IT. I am also going to look for a job in the local area - ideally part time 3 days a week.
I had a number of text message from my friends who are on dialysis and had to dialyse last night. I was on the beach having a good time, being able to drink (in terms of as much liquid as I wanted) and alcohol without feeling instantly ill and bloated. I did spend a moment thinking about them on the machines and how dialysis does effect your life in a lot of ways - mostly in the restrictions it puts on you. This does change the way you feel about life, about close friends and loved ones - at the moment it is making life for me more vivid and focused in terms of experiences. My last few years on dialysis (I think) has changed me in a lot of ways. It has made me more understanding and more patient - I also feel more relaxed around people.
I have also found that this blog has helped loads - it has helped because people who read it have an understanding of what is going on and where I am up to. This makes it easier to talk about the transplant and treatment. Previously - I have often found that people struggle to know what to say and ask (I have always been pretty open about the treatment I am undergoing etc) and the blog allows me to share that with people who are interested. It has made it a lot easier over the Christmas party period and among my friends. Interesting when I went to the local gathering on Christmas Eve in Lyme - the pub had about 200 people in it of which I probably knew 120 of them. So many friends (who I may not have seen for years) came up to me and knew what was going on and felt easy in what to say. I put this down to 2 things - both due to the Internet. Firstly this blog and secondly facebook. I believe that social sites are revolutionising communities already. They reconnect old and new communities and provide a link between people. I think that most people want to feel and have a support network of friends around them and want to feel that they belong to a community (what ever that is) facebook provides this - it provides news (gossip) on what people are up to. I think that we are just seeing the effect of these community websites are having and truly believe that they will begin to start bringing communities and like minded people together.
Of course their are a number of precautions and risks to community facebooks and people do need to be considerate of others feelings, beliefs and actions but if used wisely then great.
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