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Old 03-04-2008, 09:58 PM   #51
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I'm new here-this is only my second post. I wish I could help with the dietary needs, but anything I could add would only be guessing.
Do know that my prayers are with you. God bless.
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Old 03-05-2008, 01:24 AM   #52
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Dawn- Just saw thins thread, you have my thoughts and prayers. My friends sons kindneys are only working at 4% ( he's only 22)and he is awaiting a transplant. He said that the hardest part of the diet was not the change in foods he could have it was more of the limits and having to count all the grams of everything he put in his mouth. Tell anyone and everyone to get tested, the more people tested the more options you will have. Good Luck and stay positive,you'll make it through this.
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Old 03-05-2008, 05:10 AM   #53
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Unfortunately, the dietician wasn't as helpful for us. She was also called away and didn't come back, and has not called back with answers to questions we had since Friday. I will call the dialysis center today and see if I can talk to her. Thanks for asking about me FM, I'm hanging in there. I get frustrated, scared for Jim and the kids, and worried I'm not doing enough/right things. I know it's part of the process, but I don't like it. :>(
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Old 03-05-2008, 05:14 AM   #54
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Mikki & Smoke King, Thank you for your prayers and words of encouragement. M- I agree with your friend's son, it's a pain to count everything in grams of protien and to watch the potassium!! My prayers are with him also. Dawn :>)
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Old 03-05-2008, 11:10 AM   #55
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Mikki & Smoke King, Thank you for your prayers and words of encouragement. M- I agree with your friend's son, it's a pain to count everything in grams of protien and to watch the potassium!! My prayers are with him also. Dawn :>)
Dawn,
sure it's a pain to count, but after awhile you will beable to eyeball a piece of fruit and come pretty close in how much it weighs and know which one to buy...All new things are time consuming and change well most of us resist it and then we realize it's what we must do and hey, it's easier this way Right now you are caught in the middle, you're worried about your DH and feel helpless, but you are the center piece here..He is going to need you more than ever pretty soon..Don't let the little things do you in..Pick your battles and let the small stuff go..You can do this..Hound that dietitian, and remember there is more than one kidney center, if this one doesn't fit, find one that will. I got lucky not only is mine wonderful, it's close to home, so I don't have a long way to go..Hang in there Dawn, you will make it and so will your DH..
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Old 03-05-2008, 11:41 AM   #56
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Unfortunately, the dietician wasn't as helpful for us. She was also called away and didn't come back, and has not called back with answers to questions we had since Friday. I will call the dialysis center today and see if I can talk to her. Thanks for asking about me FM, I'm hanging in there. I get frustrated, scared for Jim and the kids, and worried I'm not doing enough/right things. I know it's part of the process, but I don't like it. :>(
I'm so sorry to hear this, Dawn. Like Kadesma said, maybe you'll need to check with other centers or whatever hospital your hubby's doctor works out of. You will really need assistance with dietary restrictions because the type of diet the doc wants him on may change over time. (Is he on low sodium, too?) I know you must be really anxious right now but you'll get through this. We'll help you, too.
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Old 03-05-2008, 01:33 PM   #57
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Sending prayers your way Dawn.
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Old 03-05-2008, 04:58 PM   #58
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Thank you Jikoni. Kades and Fisher's Mom, I finally got to talk to the dietician. She is sending me so info and emailing some sites, too. Thank you for your help in the interum.:) I have to check hubby's lunch pail and see what he ate today!! Talk later. Dawn
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Old 03-05-2008, 11:07 PM   #59
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Just catching up with this Dawn. Ask also for the total daily allowance in mg of potassium Jim is allowed so that he can take control of his diet better. There are a lot of items that can catch you out as potassium appears in a lot of items not just fruit and veges. My intake was set to 2700mg/day which meant if I ate a 140g banana, I would ingest 483mg of potassium. It meant that I could eat the banana and still know that I had 1200mg to play with.

Avoid any dried fruit and veges (incl fruit cakes), bananas, mangoes, beans, seafood, Chinese takeaway, packet mashed potato, and the list goes on! In hospital, we were often fed vegetables that had all the nutrients (and taste) boiled out of them, an apple, pear or cup of canned peaches, pears or two fruits.

Like Kadesma, I was on a phosphate-binder, Caltrate, which is often prescribed over here for osteoporosis. I would have to take between four and six Caltrates a day (two after every meal) and it depended on how high my phosphate levels were whether that meant lunch as well as dinner and breakfast. (We talk about phosphate levels over here.)

As Kadesma and I have both said, Jim can eat what he wants in moderation but he just needs to consider the overall impact of each choice and perhaps not have something else that day. Also consider whether he does daily dialysis as per CPD/APD or a few times a week as per haemo as levels are continually building up between sessions.

If the dietician doesn't give you any useful data, and they don't sometimes until you pester them (often it is very basic and general), then I can send you copies of the specific listings of several fruit/veges. It would be snail mail, but it would still get to you by the time before he went onto dialysis!!

As to the neck catheter. The first couple of times I had them inserted (here they are referred to as a Hickman line), my neck ached for weeks but the more I had, the quicker my recovery from the procedure. I've lost count of the amount but at least seven over the years. All were inserted under a mild relaxant or memory blocker so that you remain awake, even if not alert, and were inserted by a radiographer. Sure there can be complications from them but the less time they are there, the less likely that will happen. If he does need to go down that path, get him to tell the person putting it in that he will need to wear a seatbelt and to be mindful of its location if at all possible. (In my case, I also need to point out to (male) radiographers the need to wear a bra as well - they tend to be a bit blinkered as to what they are doing otherwise!!! LOL) Also if he does need to go down this path, you will need access to a hand shower in preference to trying to keep plastic over it when he showers. Much easier with a hand shower to wash your hair - unless of course he is bald and then he can probably ignore that advice!! LOL
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Old 03-05-2008, 11:45 PM   #60
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Just catching up with this Dawn. Ask also for the total daily allowance in mg of potassium Jim is allowed so that he can take control of his diet better. There are a lot of items that can catch you out as potassium appears in a lot of items not just fruit and veges. My intake was set to 2700mg/day which meant if I ate a 140g banana, I would ingest 483mg of potassium. It meant that I could eat the banana and still know that I had 1200mg to play with.

Avoid any dried fruit and veges (incl fruit cakes), bananas, mangoes, beans, seafood, Chinese takeaway, packet mashed potato, and the list goes on! In hospital, we were often fed vegetables that had all the nutrients (and taste) boiled out of them, an apple, pear or cup of canned peaches, pears or two fruits.
I remember the potassium thing bothered my daughter more than anything. The dietitian was so sweet to give me a recipe for "dialyzed potatoes" which as I recall were potatoes boiled forever in 5 changes of water and then mashed. Almost no flavor and of course, no salt. But every once in a while I'd make a huge pile of these and pepper the heck out of them and we'd pretend we were having mashed potatoes.

So much has changed in the last 20+ years, though. What is the port in the neck? Is that for hemodialysis? My daughter had what they called a shunt in her upper leg as her forearm was too small. Then the access for peritoneal dialysis was in her abdomen (duh!) and I can't imagine that has changed. Anyway, there have been so many advances made that I hope makes thins whole process a little smoother.

You will make it through this Dawn. Especially with Bilby and Kadesma to show you the ropes!
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