He has unfortunately got his mum’s genes, so his chest is at least D cup and it was a D cup at eleven and a half and twelve. So, now he is on hormone blockers that has stopped the growth. But it’s there. So he has no option other than to have surgery post eighteen. If that’s what his choice is. If he was my birth child, maybe he could have stopped growing at a B cup or you know, an A cup if hed got there quicker. He wouldn’t have had to have such severe surgery in the future. So him being a foster child has helped in many ways. But then, for him it’s also been a hindrance in that it’s, he’s having to live daily, binding daily. He will not leave the house unless he has a binder on. He will not leave his bedroom unless he has a binder on. And in this weather thirty degrees heat, you know, being binding and wearing coats and jackets, because he still feels like everybody can see his chest, you know.

Oh well, well really for my own benefit to reassure me that my heart is still sound. Although, although I have a lot of hospitalisation and a lot of visits to the hospitals, it’s mostly joints and it’s mostly it’s mostly physical things rather than, you know sort of joints rather than hearts or vascular tests, so I’m always pleased to have, to know that I’m ticking along okay. And I had, I’ve had recent high blood pressure problems so I’m taking medication for that now so I’m more concerned I suppose as I get older of my own health and my own deteriorating health if it is deteriorating because I want to know about that. But it’s also a bit of altruism, I’m also interested in helping teams like you and teams like medics and doing research to give my views and use myself and samples or whatever as good practice for them to do help them research.

Okay, so it’s to…

it’s both, it’s for my own benefit and for the benefit of society in general.

And one of the, some of the questions at the beginning of the test was- it was quite a comprehensive test lasted about an hour. Some of the, some of the questions were, a couple of odd ones, to test whether I could tell the difference between different animals or repeat different words and remember them. So it was very much, very much linked to see what my level of cognitive ability was at the moment and it was pretty high I have to tell you without being arrogant, it was very high. It was in the top 95% for my age so and I do crosswords every day so I, I like, I try to keep myself my cognitive ability, I try to keep it up.

Yeah, memory in terms of giving me a, a string of words which I can still remember and then asking me to repeat them a few minutes or half an hour later, so sort of words like face, purple, lily, church, velvet.

Okay.

You know, a sequence of words which I had to then repeat back. And they asked me to repeat back then and also half an hour later they asked me to sort of, to take say a number, 94 and subtract eight from it each time until I got back down as far as I could, so that was like a mental arithmetic test.

Well the only risk would be data, the escape of data but I don’t see any problem becauseI’m not really too worried about people knowing what my medical condition is. Everybody who treats me and I’ve had sort of 25/30 years of hospital treatment and hospital visits and surgery and all the time people have data on me and they have sort of take, take biopsies and they have, still have bits of my bits of my body and so I find it all, I’m quite unexercised about it so I don’t mind. So it wouldn’t worry me too much about the risk of any of the information being broadcast because it’s, although it’s private, I don’t have anything to hide. I don’t have any worries about people knowing my detail of my physical state and the state of my heart or the state of my lungs, so.

My message would be that stay connected to average people, you know, you, you can learn a lot from them or they can have a, a big input on your studies. And especially, you know, living healthy and like the problem I just told you about seem small but, you know, about litter in the street but if you look at it, it has an impact on our children. So if you stay connected with average people, find out about, you know, different issues or problems that they’re facing, it can direct you towards your research or find a solution to various problems that communities are facing that has an impact on their health and emotional wellbeing.

Did you feel that you were able to ask questions?

Yes, yes well I asked questions anyway, whether they felt comfortable in answering them is a different matter, but I got the impression that they, they were quite interested in the fact that I was interested. So I wanted to ask about the study and about the various technologies that they’re using and they were quite happy to answer those. So it was a two way-, two way interest really.

I think it depends on the person and how much they want to know. The person, the person who’s undergoing the tests and how much they want to know about the, the science and the medical history and medical information. Not everybody’s interested and I was particularly interested so, I’m an engineer so I’m just interested in technology and the world in general and everything I can learn, so. I was quite interested to know about the detail, so I guess some people may not want that much detail or may not be interested or may not be given it. So I think it all very much depends on the individual patient or individual research person who’s doing it.

Have you received feedback from the first time did you, did they send you?

Yeah they sent me just a…

A letter?

summary of the data and it went to the GP as well the first time yes it was just, just confirming that my heart was normal and thanking me for taking part in the tests. It was very useful to have that information, that sort of thing. But not a great detail about the reasons for the test and the reasons for the, or the results, just the fact that everything was normal.

Okay, would you have liked more reasons why they were doing it and…?

Yes very much so, yes I think that’s a good point and one that was obviously was-, was evident in the latest, the latest test because they sent me much more information and they sent me the detail of the, of the results which, some of which I understood some of which I didn’t but I’m sure the doctor would have-, would have called me if there was anything to be concerned about. I think their only concern was there was, all of the valves were normal except the one atrium valve, atrium valve was slightly distended but, but nothing, nothing to worry about.

But as a parent governor you’re presented with various like, for example, like memos or like maybe leaflets that they’ll wanna send to other parents and they ask us to go over it. Is the language understandable you know, Is it friendly, average people can read it or, What do you think of the questions? Are they too invasive? Would people be pushed off by it So we usually as parent governors give them feedback about, you know, yes the terminology is too medical depending on who like, I remember one of the PhD students she wrote for her PhD she wrote like a like I think it’s a healthy, healthy living or life, changes for life or something like one of those.

Yeah, the questionnaire that she did was too medical so we said to her like average people won’t, you know, people that speak English as a second language they won’t understand the terminology so simplify it a bit or for this word instead of using this word this is another word that you can use.

Asking it in simple terms.

Exactly

it’s in simple terms because different people are different levels in their education and understanding.

Exactly.

So keeping it simple you’ll get most people understanding what you’re trying to say.

Yeah well, I had to do it over a certain number of years because to get a comparison of how you’re functioning over a period of time. I suppose two years would not be enough; three years would hardly be very much about it. I suppose five years, you’ve got a broader landscape to see how the actual performance of the kidneys is actually bearing up.