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Patient presentation 1

My dog likes bananas - the renal diet project - (full conference transcript)

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Ian Mathie

He said:

When Ian Cundell rang and asked me to come and talk as a patient here, it was suggested I talk a little bit about what goes on beyond treatment, and how you take life forward. As you have heard, I have had a successful transplant, and it has worked brilliantly from day one. Any other problems I have had have not been to do with my kidney, it has been the underlining cause of my needing a transplant, namely diabetes.

Where do we go from there, and what do people do with their lives, and move on and achieve things? I thought about this for a while, and thought I want to tell you about my dog! Because my dog likes bananas, and it is something that has always fascinated me. You can imagine then there is this dog who, from a comatose snoring situation, can from 400 metres detect the availability of a banana, a piece of cheese, a bit of chocolate, mushrooms, or carrots.We are all renal patients; we all know the implication of these things. The day my kidneys failed and these came off the menu, was the day my dog went into depression. Now any psychologist will tell you that treating depression in humans is difficult enough, treating a dog is far worse! Coupled to that, my very helpful wife who did not want to be mean to me, decided not to buy these things at all. So bananas disappeared from the house. The poor dog could not even share one with someone else. We used to have one every day for lunch.

I had my transplant after a year of CAPD, and we went through hell during that year, because eating is a problem, and I'm sure many of you have faced the same thing. Do you know how to pick out the renal patients in any hospital waiting room, and their helpers? Just go in there and say two words. RENAL DIET! They all flinch. It can become a nightmare and in our house it caused everything from tears of frustration to screaming and almost, but not quite, throwing things. We did survive, and then came the magical phone call. I was in the Nunnery in Roehampton when I got the call, running a course. Nothing to do with the Nunnery, they just happened to have the facility. At two in the morning this telephone, which I had never heard ring, went and I was at the door and gone in eight minutes. We have not looked back since. So we have gone on forwards. I got back to work, I had tried to work through dialysis, and with two other people I actually started a new business.

My own profession is involved with Human Development. We started this new company, which is a sort of compost heap for people really. Human growbags; I, in a sense, help people to develop. The progress of my other conditions and so on meant that I could not participate in matters as fully as I would like to, and it was a bit more sensible to withdraw, although the business is carrying on. Then two years ago I found myself back in the hospital, my kidney was still working beautifully but the other conditions were still causing me problems.

Hospital is so boring! What do you do in hospital, except sit and wait? You gripe about all those little things in life that irritate you. I'm a nosey sort of person, very nosey and of course took great interest in the consultations of the bloke in the bed next to me, who had just had a transplant, and was getting a larger and larger stomach as constipation and the build up of wind took over. For those who have had a transplant, you know that this is the first hurdle to get over. Once your guts start to move again, things start to get back to normal, but his did not. They tried everything, and finally from behind the curtain I heard this young Austrian physician say, "We have all the normal things, maybe now we should try senna pod!"

Well my schoolboy sense of humour was too much for me, so I started this rude rhyme that I posted on the loo door. Entitled 'The Chamber of Vain Hopes and Disappointment'. Of course the girl came out from behind the curtain, and looked at this and read it and tittered, and the next the person did the same, and the whole camel herd came out and did the same. One thing leads to another, and the following morning the Vampires came round as they do to leech your arm, and the phlebotomist said something that had a bit of a rhyme. That provoked another one, and within a few days I was starting to paper the wall of the ward with daft verses.

One of the nurses there who looked after me when I first got my transplant said "Come on, you have to put them into a book. You have to publish them"! There was so many of them it did seem like a good idea, and it was a great way of returning something into the system: To put these together in a way we could sell, and then plough the money back in. So we did! I'm going to inflict one on you! Before I do I want you to go out and buy one of the books as, out of each one sold, £5 goes to the NKF. (Click here for details on how to buy the book - and a sample poem!).

[He recited one of his poems.]

The sad thing is my dog had to put up with this renal diet as well! So imagine his joy when I got a transplant, and came home, and these things could go back on the menu. I started another business, publishers, and that was the first product. It goes on, this business of diet. It has concerned so many of us and it frightens a lot of people off, because trying to get to grips with all these chemicals, and the balances and what they all mean and so on. When you are already taking in the fact your kidneys are packing up and you are ill, and you could die from it. It is very very daunting. The last thing you want is some well-meaning person coming along and saying "You've got to get to get your potassium right and your sodium right, look out for your phosphates, and do not forget the calcium, the proteins, and the fats". What are all these things? It is mind-boggling! We get lots of information sheets, very helpful advice. But for many, many patients I've heard them say how difficult it is.

Earlier this year we had a talk by the Renal Dietician from the Oxford Unit. Something she said inspired me to say, "Wait a minute, you can cheat when you eat, and still stick to the rules, and get the balance right". You need to understand how to do it. Now many people in this room will have cheated, most of us. We will have got it wrong, and we will have got it right. If we pooled our knowledge, both helping ourselves and helping future renal patients, is a very real prospect. This is a self-help organization, so let's do a bit to help us.

So I have moved forward again, and got another project in hand. It took me eight months to persuade dieticians to write the book, I now want you to help to put some of the information into it. We need to know what are the problems that people have faced in managing their diet. Where did you get the most confusion? Where did you get the best success? Have you managed to cheat successfully? There are people who live on culturally varied diets, since we have quite an ethnic population in this country, and it is known that renal disease amongst the Indian population is quite serious, and their diet with spices etc can complicate the matter even further.

How do we explain it? It needs to come out in simple patient friendly terms. So this is where your help comes in please. If you can feed us back some of the information we are looking for, about what puzzles you? What confuses you? Where you have got it right and wrong? We will take all this in and see if we can come up with simple easy to understand explanations of the various different factors, then take it forward to how to make food interesting.

I hated food when I was on dialysis, I was on CAPD, and it was like having a long session in the pub without the alcoholic content. I had a belly full of liquid, and none of the fun of the alcohol. So stuffing food in was a daunting prospect. Trying to eat eight ounces of protein a day was difficult. There must be other ways? Well there are! That's what we want to try and expose. I would like to be in a position at the next conference to come back and offer you another book that does all this. So I am asking for help to get some of the information to go into it.

I saw a transplant lady the other day on Ready Steady Cook, and I thought what an opportunity, and I thought Yes, lets get some of these fancy chefs to show us how to make this restricted diet look interesting and appealing. So we will have a go at getting them involved as well. It is not going to be a recipe book; however there will be a couple in it. We will try to bring food back into a form which is acceptable and so on.

Which brings me back to my dog, and bananas, because he still is able to enjoy bananas - and long may it continue. A bit like in an Alistair Cook letter from America, I seem to have gone round in rather a long circle. We have gone forward, there is life after dialysis and life after transplant. I have found lots to do. Somebody gave me a new life by giving me a kidney. I hope I am using it in some way usefully, and it's nice to be able to share it with people who have had the same problems, and let us try and share that with some of those who have yet to come as kidney patients. Thank You.

Ian will be pleased to hear from you by phone on 01295 77 09 82 or by email via Ian Mathie@aol.com, (use this email link as the message will automatically be titled "Renal Diet" in order for it to be accepted by his email spam filter). Alternatively you can write to him at: 1 Dog Lane, Fenny Compton, Southam, CV47 2YD.

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