I’ve been travelling for the last seven years, in between studying. However, those days might slowly be coming to an end, or at least changing. I’ve been grunting the world; climbing mountains in Canada, hiking trails in South Africa, jumping off bridges in New Zealand, falling out of planes in Australia, and bussing all over America, to mention just a few things.
My blindness has not stopped me, my deafness has failed to prevent this and for the most part my kidney disease has caused no hindrance. Now that could all change. I need a kidney transplant or I will go onto dialysis. If I get a kidney dona immediately, then I could avoid dialysis and be travelling again within a year of the transplant. Dialysis would change the nature of my journeys. backpacking in remote places and territories would be a no go!!!
I first heard about this problem in October 2001 at the start of my five month trip around the southern hemisphere. I finished university and return to my parents in Weston-super-Mare where I had a general medical with a new doctor. It was just a check up; something you do each time you change doctors. My blood pressure was discovered to be rather high. further tests were gradually undertaken and the day I landed in Melbourne, Australia, it was discovered that something was very wrong with my kidneys. I got an email from my Mum telling me ‘You are very ill, have something wrong with your kidneys. Go and check into a hospital. You could die! Love Mum.’ I thought great, what a start to my trip. Naturally I found a hospital after getting rather drunk I should say. Tests were taken and eventually after undergoing a kidney biopsy, it was discovered that my kidneys were severely damaged and my blood pressure was extremely dangerously high. I was put on medication to try and control the blood pressure, told to watch my drinking and continued travelling. I had planned to go back packing around Vietnam for a month but this new development to my health changed this idea. I had longer in New Zealand instead and only a week in Vietnam. All this is in the first book. Therefore, I won’t go into more details.
Once back in England, five months later, I saw a specialist who told me I had roughly three years to live if I did not quit drinking and also if I refused treatment. Obviously, I did both and fives years on I am still sober, but my kidneys have decreased from approximately 38% in March 2002 to around 17-15% in October 2007. I have felt no ill effects except perhaps I feel slightly more tired these days. I travelled around the world in 2004-05 and the only problem I had was some diarrhoea in Southern Africa. I was told the main problem I would have with this kidney condition was getting food poisoning as my body would not be able to take the sudden loss of fluid and my kidneys would go into shock. I would need dialysis immediately – something that is more difficult to get in the developing world. It is near impossible in the bush, jungle or outback.
So you can see it is a potential problem. this has never happened and I have managed to control my blood pressure up until now. I have my own blood pressure machine with speech, it is portable. However, my kidneys have continued to slowly decline. I am now getting to the stage where decisions have to be made and a dona found. A live dona would be the best. for a dona a blood type match is necessary: I am O positive, so the dona would also need to be this blood type. Then that person needs to be basically healthy and not on any medication. Then there has to be what is called a tissue match. I know little about this, but basically under a number of tests the match has to be three out of six tissue matches for a transplant to go ahead. A live dona is the best because it can be done within a year and at mine and the dona’s convenience. Where as a dead dona that comes from a person in a road accident, or some other illness or injury is subject to permission from the dead person’s family. Plus, a tissue match, getting me to the hospital in time and keeping that organ alive. This process is more complex and harder to find a match. After several tests to my body which take about six months, I go on the kidney transplant register. In the mean time my kidneys might transgress to around 10% and I will require dialysis to do the work of my kidneys. This could mean going into hospital three times a week for four hours and being hooked up to a dialysis machine, or I could have a tube put into my abdomen and control it myself and self-regulate. I could do it four times a day with bags of fluid or every night on a smaller machine. You can see at once how dialysis will restrict my movements. The bags of fluid I use myself contain 2 litres (4 pints) of fluid, heavy to carry around. The machine I could use at night again is heavy and it requires bags containing 5 litres (10 pints) of fluid. On this machine I use at night it would mean I could do things in the day, go on day trips and as long as I am home at night and get around nine hours on the machine, it would be fine. I could fly to America, or Europe and take the machine with me. the fluid would be sent to the place where I am residing. On a longer flight to say Australia, I could use the smaller bags on board the plane. However, it will mean planning my destinations months in advance, obtaining extra health insurance, something I have not used on my last few journeys and probably have to stay in hotels or take private rooms in hostels. It would be very difficult to go from places to places city to city unless I plan each stop and get the fluid in advance. I can have stocks of fluid bags at my house and say at a favourite friends or my parents, so I can go visit. I can take my own machine or I can resort to self-regulation four times a day. However, that method means I would have to plan each day around my dialysis. I do not know how dialysis will affect me, it might make me more tired , it might have no affect on my body at all. It is designed to clean my body of toxins.
I am at present planning as many small trips as possible ready for the day when I can no longer travel as before. It might not happen, it might be a short gap in between having a transplant but I just don’t know. I have to be prepared to wait many years for a transplant. Even if I have a kidney transplant and it is successful and I do not reject the organ, I will still need several more transplants throughout my life. I am only 29 and a transplanted kidney has an average life span of nine years according to the experts. Therefore if this is the case then I would require another kidney at around the age of forty or so etc.
All this is a scary prospect, it has come sooner than my family and I expected. My next trip was going to be around India: that is at present on hold, I still intend to go to Australia next year, but the date keeps changing . I have one possible dona at present but the more options I have the better. The person who has offered might not be able to give after all the tests, he might only have one kidney – which is all anybody needs to live on. The tissue match might not be enough and I might reject the organ after transplantation. It is a complicated story, there are not enough live or dead donas. It is not easy asking a family membor or a friend if they would consider offering a kidney. Most people think what will happen to me? How involved will I have to be? Can I live with only one kidney? How much of my time will it involve? What is the operation like? How long will it take? Will I feel ill during or after? What happens if I get kidney problems later on? And many other concerns. It takes a special person to want to give a kidney to someone who needs one. You are giving someone else life by offering.
If I get a kidney and it functions satisfactorally, then I will be able to re-commence my travels as before, if I need dialysis and it is almost certain that I will, then I will have to travel in a different, more conservative way. However, I will not stop living and visiting countries. I will have to plan much more in advance and it will cost a lot more, but it can be done, I have to try it if nothing else.
I tell you this story to explain a little more about this website, my challenge, my victories and my inspiration. I have another challenge to overcome; so do many other people in the world, some with a kidney condition similar to mine. some people have far worse disabilities some have less. We all have battles of our own. I just say and highlight that anything can be tackled if we try, have some help and want too. At present I am feeling sad and disappointed, unsure of the next step and already fed-up of waiting. It will be a long personal war, and the first battle has commenced, but I will survive it and win the war. Wishing everybody out there on the road or wherever, what ever battle they are fighting, literal or personal, visible or not, the best of luck. Tony Giles travel extraordinaire.