I get confused about certain foods on a PD diet. My nephrologist said I could eat cottage cheese without any restriction. Today, I read in a NKF article that cottage cheese is not a good choice (i always questioned my doctor b/c regular cottage cheese is a bit high in sodium, and is dairy, so I told the clinic's renal dietician and she didn't really say "yea" or "nay" about eating cottage cheese any time). The dietician also recommended Activia yogurt. After eating one or two of the small containers of it daily, I started having major bowel issues, but did not initially associate it with the Activia (yogurt is supposed to be good...right?). Since I have stopped eating it for about 4 days, I do not have the cramping and "I always feel like going potty" feeling. What a relief.
I see how ppl become quite frustrated with eating. I read the other day that eggplant isn't good for anyone to eat, yet I used to cook an eggplant casserole from DaVita that was for CKD patients.
I have gained more weight than I want since being on PD. Not exercising, I am sure, is part of the problem. I had both hips replaced (2016/2017) and truthfully, I get tired pretty quickly just doing housework, grocery shopping, etc. I feel like eating nothing. I bought some baby carrots and celery this week to have something to munch on and for fiber. So much of what I want to eat is full of carbs and/or phosphorus. Drinking water is fine with me. I don't miss fruit juices and I had quit drinking any kind of soda long before the CKD diagnosis (my illness was caught very late.....Stage 4 - GFR of 23). I felt good for staving off dialysis for 3 years!
I really started this post to ask about the cottage cheese, but I got carried away. I've had a rough time (financial issues: car, air compressor, car again x 3) the last few months. I guess I've been down -- which doesn't help motivate me to exercise!
Today I started thinking I am tired of jumping thru the Transplant Hospital hoops and may not want to get transplanted.
It's exhausting trekking this journey on my own. I don't have ANY family support and very little support from relatively new friends I made at a church. I am not feeling like a victim or sorry for myself. I guess this illness has brought out some of the depression issues I've fought with for decades.
But, cottage cheese is the topic.
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TaffyTwoshoes27
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Hi my name is Dave i was on dialyses for 7 years 3 on PD 4 on hemo cottage cheese is very high in sodium and a few other problems i had where phosphorus and potassium i was given binders to help at every meal i was on a Renal diet very challenging but if you follow it it works i also googled all nutritional facts for the food i ate it realy helped good luck stay💪 Keep the faith🙏 If you have more questions ill try to answer them for you
Sure. What would you like to know? I will be 64 in 13 days. I was diagnosed with Stage IV CKD in 2013 after being very sick and losing 60 lbs unintentionally. For 5 months, an Emory University educated internist overlooked my GFR of 23 and did not diagnose my kidney failure. She only prescribed blood pressure medication. She did not tell me to seek a renal dietician so I was eating potatoes and too much protein -- all of which made me more sick. I started PD in Jan 2016. I was approved for transplant in 2015. My blood type is the most common: O+
Hi have you had your transplant yet? My reason for CKD is ive been type1 diabetc for 36 years and the long term use of insuling damaged my kidneys😬 when i was diagnosed i my GFR was 12% had to start PD WRIGHT AWAY i have a long and amazing story🙏🙏
I wish I could provide more information on PD but it will not be my choice of dialysis so once I made that decision I stopped researching. The weight gain can be from the method of dialysis since you are retaining fluid with PD. I also asked my RD about diet changes when on PD and her issues were that PD offers the least amount of meal plan changes than any other modality.
Since you have already taken the training for PD did the staff talk about the food options available with any form of PD? I ask because when I spoke to the staff and techs at the center I was told that I had to maintain my CKD diet while on PD for at least six months. They also told me that I would have to curtail all but the rudimentary exercise program because of the frequency of PD (manual).
Cottage cheese was on the list my RD said I could have but it's not on my list of favorites, but then neither are Brussel sprouts or lima beans. Have you posted this in the Kidney Dialysis community? There are a number of folks there on PD and you might get some ideas from them in that community. Sorry I couldn't help more.
Thanks for your replies. I thought that I posted to everyone, so I assumed it went to the community. I haven't done a lot of posting myself, mostly I have answered questions.
My renal nurse says that weight gain is more prevalent in PD patients because of the dextrose in the dialysate and you are correct about the exercise limitations. My nephrologist said to walk 20 minutes a day and that would be enough. I have slacked off on even walking my dog lately simply because of being tired. I did a lot of research on the PD diet, peritoneal dialysis, and chronic kidney disease from the DaVita and other websites. I do my own research on the net. I'm also on a Closed Facebook group with other PD patients.
I will admit my #1 issue is that I hate cooking. I have always hated cooking and I do the best I can on my renal diet with the limited amount of cooking that I can tolerate. I've considered taking cooking classes because maybe my hatred of it is just because I feel so clumsy doing it. I grew up in a family where everybody wanted to cook, and I was the only one to clean the kitchen (Cinderella!).
Like a lot of people, I have good days and bad. As I said earlier, I recently had my second, 2-year evaluation and got a lot of negative feedback from my transplant team. There were multiple requests for tests that have already been done; my portal records were not up to date even though I continue to keep my coordinator advised of all of the tests, vaccines and so forth that have occurred in the last 2 years. I don't know about anybody else on the board, but my team acts as though they would prefer I just forget being on the transplant list. I don't like the hypocrisies of that I must be compliant with their wishes, but when I ask them to update my records and give them information, nothing is done.
I'm a nice person; i believe I have value; I have been extremely compliant; my nephrologist has nothing but good things to say about me to the Transplant Nephrologist; but when I go to these evaluations I always feel quite down afterwards. They're requiring letters from a psychiatrist; they're requiring extensive, expensive dental work; they're requiring that I apply for assistance from the Georgia Transplant Foundation to get dental assistance, and there are so many restrictions to accomplish that single task that its becoming overwhelming. Doing this by myself does seem quite daunting and my transplant team has been of little assistance to me. My nephrologist is quite perplexed because he said that I help to pay their salaries by having my transplant listed with Piedmont Hospital instead of Emory University.
Piedmont Hospital has a support group, but getting to the busiest part of the Atlanta area is a struggle for me. The traffic is horrible; I have to pay for parking; and they are not very well attended meetings.
I hope to figure it out when I feel less discouraged by the process. My nephrologist says that it's all a game and you must play their game. I was never good at playing games with people. My forte in playing games consisted of softball, volleyball, kickball, euchre and others. I guess I just need to get into the game.
I don't want to get into another issue but if I'm off base let me know. Have you looked into hemodialysis? I only ask because that can lead to HHD and with that more frequent dialysis. With that comes an almost normal meal plan, more energy for exercise and other activities and a return to a more normal lifestyle. When I decided against PD, I looked into HD and then HHD. I'm sorry if it sounds like I'm pushing it but with all of your concerns HHD could alleviate most of them. Sorry if I went too far off course.
I remember your posting about home hemo dialysis in the past. When I researched it because of your post, I was concerned that my environment may not be hygienically in line with that modality. I have a dog and a cat, and sometimes cannot keep them out of my room.
The whole concept of exchanging blood is very scary to me. However, I did talk to my nephrologist about it. I feel that I would want to have a partner or at least someone close in proximity to my home that would be a good resource for helping me through that journey. Unfortunately, I do not have that luxury. Even though I know you can do HHD without a partner, I feel that I would be more comfortable having someone near.
When I first spoke to a renal nurse about the available modalities in 2013, HHD was not an option for me because I live alone. Since then, I read your post and understand now that hhd could work.
I have an appointment with my nephrologist next week, so I may ask him again about my options and whether being on hhd would make me feel better than I do right now.
I have two dogs and neither one would be an issue during my dialysis time. I'm not a fan of needles so when I discovered that the buttonhole technique eliminates that fear and that I can return to an almost normal meal plan it seems like the obvious choice for me.
I am sorry that the transplant physician is making you feel sad. Possibly talk to your neurologist about this as he/ she may have someone in mind who is a better communication match. It is not uncommon.
This is your body and health, you have the right to be comfortable and your team should be a team; working together!
Since I lost 60 lb unintentionally not knowing that I was in CKD, stage 4, I have gained that weight back since being on PD. My nephrologist said that my BMI is still within the hospital's acceptable range for a transplant. I believe I lost so much weight before being diagnosed with CKD, Stage 4, that I weighed about the same that I did when I was 14 years old, and I was 57 at the time. I am now working to get the weight off. I believe some of my stress eating triggers unfortunately lie in the carbohydrate and sugar categories. Whether I decide to go forward with a transplant or not, I intend to work on curbing the sugar and carb intake and losing the weight.
I don't know much about cottage cheese. But boy, Activia, that sends me to the restroom right away. Sorry to hear about all your transplant center headaches. I find it very frustrating dealing with them as well. One center messed up every single bill and I had to call them multiple times to clear up issues. They were also so unclear on instructions that it took so long to move through their process with all the various testings and scheduling.
I don't have much advise on cottage cheese. But I do hear ya on some of the other struggles.
It is nice to know that someone else understands some of these issues. I get discouraged when a renal dietitian had no clue whatsoever that the symptoms I was telling her about for over a month could have been related to the Activia she suggested. I, through research on Google, finally found that Activia does have those negative side effects on certain people. I even had an appointment with a gastroenterologist and HE did not suspect that the Activia was causing the adverse effects. He wanted to do a colonoscopy, but since I had had one less than a year ago, he could not schedule one and hope that Medicare would pay for it. Instead, I am having an EGD next week. I guess it is all about the tests and how much money they can make off of patients. I have a family history of esophageal cancer, so I am going forward with the EGD for precautionary reasons.
I also read in the results from my recent 2-year evaluation that the abdominal sonogram picked up what they believed to be colonic diverticulosis. It boggles my mind that no one from the transplant hospital nor any of my Physicians have brought that to my attention. You really do need to be your own best advocate when it comes to this and other diseases. I called my gastroenterologist when I saw the indication of the diverticulosis, but they gave me absolutely no information or remedies to assist with the adverse effects of that.
I live in Florida and we have an unsalted cottage cheese on the grocery shelves. It still has phosphorus because it is dairy and cottage cheese has sodium naturally, but the salt added t cottage cheese is for taste. It has a sweet flavor, but I do not eat it more than once a month because of the potassium and phosphorus. I like it with fresh fruit, but more fruit than cottage cheese. I bought a paper back book that lists the ingredients in one serving of food, and I check it out when I'm not sure. I must confess that I check it out after I have eaten it though, but over time I have kept my kidneys at stage 4. So just do your best.
I understand your frustration with the diet and life.
As far as the externals with your car, etc. they will pass as things break and get fixed - if it is not one thing it is another.
You have come to the right place here as the community will offer plenty of support.
As far as your family, not an easy trick; is there one person or a close friend that you are able to explain your disease to and ask for support? Give it some thought.
As far as church members, you are new there and they don't know you- to ask for support is hard for them. I would set up a meeting with your clergy and begin there. It's their job.
Another tbought is calling the 800 number at the NKF and asking for them to match you with a peer mentor to help.
Activia? It has different effects on everyone and contains a lot of sugar. Two in a day is a lot.
Speak to your dietician about possibly switching to a Greek Yogurt. Ativia has one.
Also if it would be okay for you to add Cream of Wheat ( yellow box) or a bit of Grapenuts to your diet.
Both are good sources of iron and help with digestion.
Cottage cheese is high in sodium. Breakstone. Puts out a low sodium version which has about 220mg as opposed to the 400mg or more in regular and even low fat.
Give your doctor or renal dietician a call and check it out with them.
Raw red and green peppers dipped in a bit of hummus ( Joseph's is lowest in sodium) makes a good snack and helps the digestion. Ask.
I also find that eating more steamed cabbage, cauliflower and onion has helped.
Most importantly make sure that you do eat daily and drink the amount of water recommended by your doctor / dietician. You don't need to risk dehydration.
Right now the world is frustrating - call your doctor or Davita Center for some support and reach out.
The transplant is up to you, but taking your name off a list with so much going on is cutting things before they happen.
Life is complex at times it but very much worth living. Look for one good thing, one good deed and one good word in each day.
Know we are all here for you and in our prayers.
Try to stay positive, call your medical team and feel free to reach out..one of us will always reach back.
Life is complex at times it but very much worth living. Look for one good thing, one good deed and one good word in each day... Bet, those words, even though they were for someone else, were just the reminder I needed to end my day. Thanks
I contacted NKF a couple yrs ago and did have a mentor for a while. It is a great program but sometimes you are coupled with someone that has a totally different experience than you and it isn't as effective as you felt it would be. In any event, that was my experience. I tried it on 2 different occasions for about 6 months at a time.
Thank you for your support and your prayers. I am simply trying to take it one day at a time.
I wish that life was simple but unfortunately it is not.
I am hearing you about your mentor experiences and saddened that they were not able to provide you with the support that you needed.
Unfortunately, people in charge do their best to match folks with similar needs and personalities; it may look okay on paper, but when the two contact it is not the best match. Human Nature.
Take a breath. Either way, go one day at a time. Look for the better in each day, eat healthily and go to your medical team when you feel that support is needed; that's what they are getting paid for.
Know that you are in my prayers and here ; feel free to reach out at any time!
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