Living with HD
By Jim Wade
Why does all the most important things begin with F?
Food, Family, Friends, Fitness, Fistula and Freedom
After recovering from the initial trauma of being diagnosed with renal failure (another F) overcoming the fear, the degrading feeling by having the various groin and neck lines fitted – the neck lines making one feel like Frankenstein’s monster. Finally settling down with the fistula. This does not necessarily work first time and then some six weeks pass before it can usefully be activated and now taking great care that it continues to function and on the theory that the less needles the better I gave up having lignocaine a long time ago.
One of the first lessons learnt was that it was much my responsibility to care for myself especially with the fluid intake and the kinds of food that passes my lips. One memorable occasion I was asked did I know what phosphate is – yes I said it is guano or bird lime. Of course it is, and some Pacific Islands have been stripped of it to provide fertilizer for the farmers. This fertilizer is picked up by the vegetables and why all the vegetable I like are on the forbidden list especially fresh Spinach even saying the word brings back an image of a bed of spinach with a poached egg on top. I am very fortunate as I still pee a bit and so I don’t have to be so careful with the fluid intake, even so I have my own cup (which holds about 150mL) and ration myself on how many cups I have in the day. The Dieticians have been of great help and I feel that I am great challenge to them, for example my latest question is an organic chicken to be treated as a game bird where it is given freedom to run around and the potassium build up the same as pheasant. Just in case I am only sampling the breast. The family are heavily involved in the dietary regime reminding me to take the tablets, especially the phosphate blockers and don’t tempt me by bringing in some of my ex-favourite foods crab, lobster, mussels - oh I could go on for a long time yet.
You get to know how to differentiate between friends and acquaintances very quickly. Friends don’t put a pint glass in your hand and also don’t take offence if you turn your nose up at some of their offerings, they try hard to help to keep to the diet.
Fashion; one of the functions of Hd is remove the excess fluid, this is achieved by weighing and measured to the nearest 100 grams (i.e 3.5 ozs) and any excess weight removed. Therefore if the clothes you are wearing differs from session to session confuses the situation. So fashion has to be very boring with similar weight clothes being worn throughout the year.
Fitness and exercise is all important so I joined the gym soon after I started dialysis and although some times I find it very difficult to drag myself away from the comfort of the couch I know I wouldn’t be doing so well without it. Maintaining the little grey cells is essential as without exercise they atrophy, so reading, struggling with crossword puzzles and undertaking other mental gymnastics is vital.
Free or leisure time are the days when you can go off enjoying yourself and visiting those places you didn’t have time to when working. (Not really true as I would still like to make a tour of the Pacific islands). To this end I have joined the National Trust and the RHS where not only gardens and houses but their restaurants are a treat to visit. Finally with Sheena’s help I try to get away twice a year for a holiday as this gives me something to look forward to and also gives the wife a well earned break.
