Prayers and info please!

[DawnT]

Update

Went to kidney Dr. yesterday and had meds changed. Jim's bp has been going up, headaches increasing and kidney pain. Dr. wants Jim to get the vascular ports put in as a backup so when he does have a transplant they don't have to go through the neckif they have a problem. Jim has definately decided to go with home dialysis as he wants to have some semblence of a normal lifestyle; tinkering with motocross bikes, working on the barns, going to the races,.... We now have been told to have him eat 40 - 59 grams of protien a day, low fruit as it is high in potassium so instead of an apple it is a half; no bananas, dried fruit, cantalope, honeydew, oranges. When I read the list, he asked "What fruit can I have?" I also had to tell him no nuts either, you would have thought I cut off his left arm. We go back in May to see how things stand. In the meantime, the kids are being tested as possible donors for thier father.

 

[kadesma]

Went to kidney Dr. yesterday and had meds changed. Jim's bp has been going up, headaches increasing and kidney pain. Dr. wants Jim to get the vascular ports put in as a backup so when he does have a transplant they don't have to go through the neckif they have a problem. Jim has definately decided to go with home dialysis as he wants to have some semblence of a normal lifestyle; tinkering with motocross bikes, working on the barns, going to the races,.... We now have been told to have him eat 40 - 59 grams of protien a day, low fruit as it is high in potassium so instead of an apple it is a half; no bananas, dried fruit, cantalope, honeydew, oranges. When I read the list, he asked "What fruit can I have?" I also had to tell him no nuts either, you would have thought I cut off his left arm. We go back in May to see how things stand. In the meantime, the kids are being tested as possible donors for thier father.

Good let the kids run with this, it is great and makes them a part of it all..That's what families do Now about the phosphorus there is a med that I have to take to keep phosphorus in check when I eat..It is called renagel and all of us on dialysis are using it..I don't need as much on the PD dialysis as on hemo dialysis, but it really helps..doesn't do anything to you just blocks the absorption of phosohorus id cut way down on nuts and especially cheese..Now of course I can have both, but do so in moderation..Find out about this med, it can make things easier for him..Of course he can't make a whole meal of just apples but you know the old saw, everything in moderation..Heed it, it oh so true..

kades

 

[DawnT]

Kades, The Dr. put him on kolax(?) for the potassium. It is supposed to direct it into the bowels instead of the kidneys. Sounds kind of like your med. He needs to take it 3 times a week. Does it sound about the same? He still has pb&j sandwiches for lunch at work as he will not eat lunch meat. What about pineapple, is that high in potassium? Where can I go to find out? The list the doctor gave me doesn't seem very clear. Any help would be greatly appriciated!! ;>) Dawn

 

[kadesma]

Kades, The Dr. put him on kolax(?) for the potassium. It is supposed to direct it into the bowels instead of the kidneys. Sounds kind of like your med. He needs to take it 3 times a week. Does it sound about the same? He still has pb&j sandwiches for lunch at work as he will not eat lunch meat. What about pineapple, is that high in potassium? Where can I go to find out? The list the doctor gave me doesn't seem very clear. Any help would be greatly appriciated!! ;>) Dawn

Dawn,
Had to get out my book. Pineapple for some reason is not listed..but, here are some Ideas for you (0 to100 mg.)
Low potassium fruits, these are 1/2 cup servings or I'll give a size:
applesauce, bluberries, cranberries -1 cup. grape juice, papaya, peach or pear nectar, canned pears, Japanese persimmon,
Med potassium fruits (101 to 200mg)
small apple apricot nectar
berries, cherries
canned figs
fruit coctail, grapes 15
gooseberries
1/2 grapefruit or juice
lemon juice
mango/papaya
passion fruit1-2
small peach
med. plum
2 Tab. raisins
2-1/2 inch tangerines
1-c. watermelon, be careful though if liquids are restricted.
High potassium fruit (201-350mg)
fresh apricots
dried apricots
avocado pears
bittermelon
dates 1/4 c.
durian, 1 med.
dried figs,2
guava
kiwi,1/2 med.
loquats
melon 1/8 of a small
nectarine, 2 inch
pomelo
small oange or juice
pomegranite
fresh med. pear
10z. pumpkin seeds
very high potassium ( content varies)
Banana,
breadfruit
durian
kabocha
platain
prunes
prune juice
taro root.
Hope this helps you a little will try to find out about the pineapple for you..
Can also help with the veggies too if you need it.

kades

 

[kadesma]

Good let the kids run with this, it is great and makes them a part of it all..That's what families do Now about the phosohorus there is a med that I have to take to keep potassium in check when I eat..It is called renagel and all of us on dialysis are using it..I don't need as much on the PD dialysis as on hemo dialysis, but it really helps..doesn't do anything to you just blocks the absorption of phosphorus..I did cut way down on nuts and especially cheese..Now of course I can have both, but do so in moderation..Find out about this med, it can make things easier for him..Of course he can't make a whole meal of just apples but you know the old saw, everything in moderation..Heed it, it oh so true..

kades

 

[DawnT]

Thanks Kades!

Thank you, Kades. Jim was so very happy to see pears tonight I thought he would cry. Where can I get that book you got the ino from? You have once again proven to be a life, and sanity, saver. By the wasy, His mother, 68 years young, wants to see if she can be a donor.
Dawn

 

[Fisher's Mom]

I'm glad you have some information now. There should be a dietician associated with your hospital or dialysis center that can provide you with recipes and suggestions for getting the most enjoyment from hubby's new diet. Here's a site that has the protein, sodium, potassium and phosphorus values for a lot of different foods.
Renal Failure Diet Care Guide Information
HTH, girlfriend!

 

[DawnT]

Thank you Fisher's Mom!! You guys don't know how much of a life saver you are to me at this time in my insanity! I mean Life. LOL Thanks again, Dawn :>}

 

[kadesma]

Dawn the book I have was given to me by the dietitian at the center.I'd contact the center you will be using and ask for help from them. Explain you want to get started NOW not wait...If they are anything like the ones I'm working with they will bend over backwards to help you.
kadesma

 

[Fisher's Mom]

Kadesma is right, Dawn. The dietitians are really unsung heroes in the whole renal disease arena. They are awesome, always willing to help, will usually return phone calls immediately, and have so much information. They know how much it means to someone who's facing a tough health problem to just have a meal they like! You can't really say to your nephrologist "My hubby is really depressed about not being able to eat his favorite fruits". You'll get a blank stare. But a dietitian will understand and bend over backwards to try to find foods and recipes that will help fill the void.

So how are you feeling, Dawn? This is a lot for you to handle. Just remember that there are people here you can vent to or cry on or rejoice with. We've all got your back.

 

[smoke king]

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.

 

[mikki]

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.

 

[DawnT]

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. :>(

 

[DawnT]

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 :>)

 

[kadesma]

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..
kades

 

[Fisher's Mom]

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.

 

[Jikoni]

Sending prayers your way Dawn.

 

[DawnT]

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

 

[Bilby]

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

 

[Fisher's Mom]

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!