Bruce has another week and a half off from work to recover. I think he's doing pretty well considering the major surgery he just had, and the fact that he is doing new dialysis with no help from kidneys. He gets hemodialysis on Mon, Wed, and Friday at a center for 4 hours each day. He has now started to drive himself so that takes some pressure off of me. He got his stitches (staples) out on Monday and he says he can move a little better now. They told him not to put anything on the incision just soap and water. It looks like it's irritated to me and my natural instinct is to put some neosporin or cocoa butter on it so I can't even look at it or it makes me crazy. He is not supposed to lift anything and still can't take a full shower because of the temporary dialysis port, so we are washing his hair in the sink with towels wrapped around his neck...brings me back to my days at the Aveda salon.
The diet: He has felt better by actually sticking to the fluid intake limit. We measured it out as 3 water bottles per day. That is total of all liquids including some foods that are liquid. So he can't have any smoothies, most fruits, soup, etc. He used to drink tons of water so this has been a big adjustment. We bought lots of candy to help him not feel dried out. I don't have time to make recipes everyday and I can't seem to find any info on some samples of things he can eat. Of course there are lists everywhere of food items to avoid and what is ok, but I want an actual example of meals, snacks, etc. Something I don't have to spend hours making and shopping for everyday. He was on this diet before he got on dialysis (last fall) and it was a struggle then too but it seems worse now for some reason. The basics are: No high amounts of sodium, phosphorus and potassium. Which eliminates a lot of foods. He is supposed to meet with a nutritionist this week and I told him to make sure they don't just hand him a list!
I think everyday gets a little better. He is still very tired and doesn't have normal face coloring- he seems very pale. After dialysis he is freezing cold. Last time he wore a sweatshirt and socks and turned on the heat in the car when it's 80 outside. Sometimes he gets nauseous for no apparent reason, but that has been the case with him for almost a year now. He can't eat much which is good considering his options. He meets with Dr. Russo next week at center to talk about everything, but right now we know nothing about his blood levels. He continues to take off fluid that he gained after surgery, so that is good. He hates going to dialysis of course, and is getting very bored but when he tries to do things he ends up feeling bad. I think by next week he will be dying to get back to work.
In 2 weeks he sees surgeon again and will get the sign off to get taken off hold on the transplant list. They put him on temporary hold during his surgery and recovery but he doesn't lose his "place". He has been on transplant list for 1 year and 2.5 months. Maybe one day soon it will happen!
Since by Man Came Death - A Podcast Text
2 years ago
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If Bruce is bored, but awake during dialysis, this is a good time for him to read anything and everything on nutrition and the diet he is on. Familiarizing himself with what raw foods are high in sodium, potassium, etc. will allow him to make the right choices. You will probably find that almost everything pre-packaged is too high in such ingredients. It seems sodium is the favorite flavor enhancer and preservative used by manufacturers of such items. Almost everyone knows that bananas are high potassium, but so are potatoes and others. A good basic nutrition book is a great place to start and he can move on from there. I have found nothing beats the internet for finding great ideas and recipes for special diets. Perhaps if Bruce is up to it and has the time, he can learn to fix a few of his own meals (they will likely be different from what kids would like to eat anyway) and he will learn what he likes. Find out what herbs, spices and alternative seasonings are okay to use to flavor his foods without resorting to salt or potassium. You both will realize the importance of reading food labels down to the last ingredient. If amounts are crucial it would help for Bruce to keep a daily diary of how much sodium and potassium is estimated to be in each item he eats or drinks. If Bruce takes on some of the responsibility for this he may ultimately feel a bit more in control of his situation.
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