NEW TO SITE AND DIALYSIS

[gundomom]

Hello,

My very good friend (John) just had his second kidney removed due to Kidney Cancer. He was just released from the hospital a few days ago. My best friend is his life companion and caretaker. The doctors gave my friends almost no information on how to take care of him, what to eat, what to expect with dialysis, etc. They are really lost and looking for help. John was told by friends who are trying to help him that he should severely limit his meat and grain intake. John's girlfriend and caretaker thinks he should eat more protein, and not just a few pieces of fish each week. John does not have to worry about his weight. In fact we feel he's dangerously thin after his surgery. He also had his bladder and prostate removed. He's been battling kidney and bladder cancer for about 8 years. I would really appreciate any help or tips this community can provide. My friend is not inclined to join an on-line group and post questions. So I will pass on the information I get from this group. Thank you in advance for any and all help you can provide. Thank you.

[ddwebangel]

First let me say how sorry I am for your friend having it so tough. You are an angel to help and you have come to the right place. Now if the doctors are not being helpful find another. Your friend has to be on dialysis because with no kidneys all the toxins will just build up in his body & he will die. He needs protein. Protein helps red blood cells & gives you energy. Fish, turkey, chicken, broccoli, cauliflower to name a few. Peanut butter is also a good source of protein. There are also protein bars & cookies that are good but also good if you are a diabetic. Need to watch his potassium, phosphorus levels. He really needs to see a dietitian. Watch how much fluid he in takes. And that includes fruits & vegies that are considered water foods. Frozen grapes help me when I am thirsty. He should try to do some exercise even if just walking. Watch liquid intake & no salt. But the number one important thing he needs is doctors that will help him. Everyone is different but we are all the same-fighting a chronic illness. We all have felt alone & hopeless at times & this is the place to vent, hear other stories & not feel alone. We can give suggestions that might help. What I say at the end of my posts is to STAY STRONG & YOU ARE NOT ALONE. Hope I helped & there are many others out there who will offer suggestions & let you know the sick person & caregivers are not alone. You & your friends are in my prayers🙏❤️

[sarasue2 in reply to ddwebangel]

Look in the phone book for a dialyis center call and ask if they have a kidney educator on staff or no where you can reach on. Start there and they will advise you on who and what to see. Sounds like you need a new kidney doctor to start and they can tell you who they would recommend. Went through this five years ago and was scared out of my mind but was able to get off dialyis. Now going through it with my husband and it has changed a great deal and the educator was a God send. Not good to take advice from people who have't lived through it.

[KidneyCoach NKF Ambassador in reply to ddwebangel]

Remember "limit" *not* "E"liminate foods, salt etc. One doesn't need to eliminate anything from the diet (except perhaps starfruit) just exercise moderation and caution especially if doing in-center dialysis. I've been doing nocturnal/extended home hemodialysis for 15 years and have virtually no limitations. I can and do eat avocados, tomatoes, yogurt, cheese, nuts, ice cream, chili, chocolate and more. I also don't have any real fluid limits, just use moderation. With those doing 12 hrs or less per week of treatment then yes limitations are important and remember to take your binders if required (I've only taken binders for maybe 2-3 months in 15 years). Dialysis process tends to remove protein from the body which is why patients often feel so hungry or get the munchies during or after treatment. Be sure to ask dietitian your daily protein goal and try to meet that goal. Protein sources are eggs, chicken, turkey, beef, pork, fish. Beans with rice provide a complete protein but beans are a higher phosphorus food so be cautious with that. Foods like broccoli are higher in potassium along with tomatoes and protein so watch portion sizes. kidneyschool.org is a great place for information. Blessings

[mhawk123]

Does anyone have the problem of draining better when sitting up on PD and when lying down the alarm comes on? I am trying to get positioned right to be able to sleep and drain good. I got new machine yesterday and still having the same problem....

[KidneyCoach NKF Ambassador]

The best place for information online would be kidneyschool.org They have wonderful little modules of questions and and answers to help educate about chronic kidney disease, failure, dialysis, diet, accesses and more. Give it a look. Also National Kidney Foundation, AAKP and others can offer assistance. Lastly have the nephrologist refer him to a kidney education counselor or dietitian. Blessings