Dialysis : Hello Just looking for some advice... - Kidney Disease

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Jk2023 profile image
29 Replies

Hello

Just looking for some advice as we are completely stumped over the lack of information my mam has been giving....

My mam starts dialysis 3 times a week starting tomorrow she also has diabetes and we are so confused as to what she can eat after her dialysis the dietician we spoke to was completely useless and mentioned foods that are not suitable for diabetes even though we told her multiple times she was still going over the same thing!! My mams kidney specialist said she needs to limit her salt and sodium which again I've googled and some places say she can have it and other places say she can't. It would be very much appreciated if anyone has any meal ideas till we get sorted on what she can and can't eat thank you

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Jk2023
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29 Replies
jodaer profile image
jodaer

OK, first off quit googling. The preferred diet for diabetes and the preferred diet for CKD are nothing alike. Your mam will have to decide which she will eat for. It's pretty difficult to eat for both, but it can be done. As far as sodium listen to her doctor. CKD patients should eat for THEIR labs, not everyone else's.

Jk2023 profile image
Jk2023 in reply to jodaer

It's just so confusing if we had more time we would of looked more into it but we didn't even know she had kidney problems till recently even though she had kidney problems in 2021 which we didn't know about as the doctors failed to mention it to us then was told she needed to start emergency diaylisis through a line in her neck till she eventually gets her fistula she's had her fluid cut down to a liter a day so it's thinking of stuff to make her that doesn't come from her liquid restriction! I'm sure we will get the hang of it eventually.

jodaer profile image
jodaer in reply to Jk2023

It is confusing but you'll figure it out. How old is your mam? Are you in the UK or the US or somewhere else?

Jk2023 profile image
Jk2023 in reply to jodaer

My mam is 56 we are in the UK

Mgt8 profile image
Mgt8

Hi,

Yes, I was forever told what not to eat but not what to eat...

I have always found the mayoclinic website good for advice on food for a kidney diet and I would imagine they have info on diabetes foods as well.

Hope this helps...

Mgt

Jk2023 profile image
Jk2023 in reply to Mgt8

I know then they wonder why people are so confused on what to eat I've ordered a few books from amazon but again half the stuff in the book I've never heard of in my life😂 I will have a look on mayoclinic thank you:)

Darlenia profile image
Darlenia

Hi. So very sorry that your mom experienced kidney failure; sadly diabetes is the leading cause for that situation. Diets are often modified once dialysis enters the picture - dialysis removes toxins that natural kidneys no longer can so diets change accordingly. Your mom's labs will show what is now in range or out of range now. Generally, the "renal" diet becomes a "dialysis" diet. Sadly, we had the same experience you had with our dietician. She directed my hubby, a T2D, to eat high sugar, high carb foods like rice, bread, noodles etc. (Often, it's the "white" foods that are the culprits.) She seemed totally unaware that high glucose narrows and stiffens the blood (including filtration) vessels, collapsing organs in the process. We took our concerns to our family doctor and nephrologist. Both immediately urged my hubby to keep his primary focus on curbing his sugars and carbs. Needless to say, he's very motivated to do so - he doesn't want diabetes to also take his heart, eyesight, limbs, including his relatively new kidney transplant. (His diabetes clearly wants to now shut down his bladder.) So, we quickly learned to substitute cauliflower rice instead of regular rice, to replace pasta with sliced, diced, or spiralized zucchini, to use kohlrabi for potatoes, etc. We are label readers. Now, please ignore this information if your mom's primary reason for her kidney failure isn't diabetes. And it's always important to double check with medical doctors any questions you may have or information you've been given. From one caregiver to another, you're a wonderful person to be concerned - your mom needs you to guide and support her on this journey. It's such a difficult road to walk, it's very loving of you to make it as easy and smooth for her possible. May we all be so lucky to have a great caregiver in our corner when that time comes. Hugs.

Jk2023 profile image
Jk2023 in reply to Darlenia

Thank you so much we didn't even think of those as a alternative it's made it a lot easier to think of a nice meal to make her after diaylisis. I've been told salmon prawns tuna skinless chicken etc but then I've been told to limit protein it's all confusing. Its crazy how many health conditions diabetes causes. I'm pleased your hubby got a new kidney I hope he feels a lot better :) I'm hoping to give my mam mine in the future if I'm a match my mam also has 2 sons who want to get tested and my husband aswell so hopefully fingers crossed one of us is and she isn't on diaylisis for to long. Aw thank you :) I just want her to not have to worry about anything she has enough worry and anxiety about starting diaylisis she hasn't really had a lot of time to get her head around it it all happened so so fast.

Darlenia profile image
Darlenia in reply to Jk2023

It's truly heartwarming to see you paying attention to your mom. Such a blessing. For your mom, she's now on dialysis; the diet changes dramatically then and diet options generally expand. Your mom will very likely need a lot more protein to increase iron levels and prevent anemia, etc. You might notice that your mother complains of feeling "cold" - that's a sign her iron levels are low. Besides "fins and feathers", I quickly reintroduced lean meats back into my hubby's life when he was on dialysis. Over time, as far as diabetes is concerned, we adjusted our mindsets and began cooking dinners with a protein and two or more veggies (no potatoes) on the side. Or we stir fry shrimp (or something else) and veggies together. Fruit can be very sweet, so we select low sugar berry type fruit; mixing strawberries and blueberries together, right now rhubarb is in season and we enjoy it sweetened with "Swerve", a great sugar substitute for this. Swerve also serves well for baking/cooking. Baking is difficult since so many cakes and cookies require flour; I substitute almond or coconut flour where possible. Thankfully, keto ice cream is available now - including sugar free pudding, as well as low carb breads and buns. In our stores in the US, all shelf products come with labels - we simply simply read the nutrition list and immediately know whether or not it's good for hubby. The key thing is to stay away from processed items and to buy fresh products. (Your smartphone will let you know what's in a fruit or veggie, etc.) And, trust me, fresh foods are far tastier than manufactured items. Simply keep your eye on the nutrition labels and on your mom's labs and you're good to go. You will catch on to everything quickly. It soon becomes a way of life. With such a supportive family behind her, I'm sure your mom will do very well - including perhaps receiving that new kidney! (Please note that if that happens, the immunosuppressants will ramp up her diabetes even more. So what you do now will help you in the future with that issue.) Take it a day at a time, you'll soon figure out a nice, healthy lifestyle for your mom. It likely will also benefit you, just make sure you are also aware of your own labs. I got so wrapped up eliminating not only sugar and carbs from the meals I planned for hubby but also sodium because his labs. Then, I passed out in public - discovered I was desperately low in sodium! It's a caregiver's warning - we often forget about ourselves. So be mindful of labs in all aspects - yours and your mom's. Onward and forward - have faith, you've got this!

Jk2023 profile image
Jk2023

Thank you so much for food ideas :) I feel less stressed about it. what sort of things do you make your hubby for breakfast ? She normally likes her spready cheese on toast but will probably have to substitute that for something else. Thats awful were you ok? You definitely forget to look after yourself when looking after a loved one I'm currently half way through my pregnancy so will have to be careful to make sure that doesn't happen.

Darlenia profile image
Darlenia in reply to Jk2023

When my hubby was on dialysis, he often had eggs for breakfast. I occasionally served them on bread - keto (low carb) bread is available here in Aldi, Wal-Mart, and other grocery stores. Your mom can likely continue to have cheese on her bread - the lower sodium cheese are preferred since she has that restriction. If necessary, simply heat it for a few seconds to make it "spready". My hubby also had keto cereal for breakfast occasionally. It's in the larger grocery stores. Simply check the labels on everything to make sure they work for your mom. You'll find that you won't be able to eliminate some things entirely; just do the best you can. In the meantime, definitely don't ignore your own bodily needs. That baby you're carrying needs you to stay healthy too. Cheers to good eating for everyone!

Oscar_25 profile image
Oscar_25

Try the DASH diet. It limits sodium, checks your phosphates and phosphorous levels. Ask your dietician about such diets. Also read labels on food containers .

Suzyk9 profile image
Suzyk9

Hi! I am a Dialysis Clinic Manager/Nurse! You need to ask fo an appointment with the Renal Dietician where your Mum dialyses! They should be able to give you recipe books etc to help with the diet! When you are on dialysis you no longer need to restrict protein intake! You do however need to restrict sodium (salt) intake as too much salt will put the blood pressure up. You need to stop having high potassium foods such as bananas, chocolate, nuts, oranges, strawberries. Do not drink coffee as high in potassium. There are other foods also high in potassium so get a list from your dialysis centre. You also need to avoid foods high in phosphate which are cheese and other diary products. Again get a diet sheet from the clinic! It is very difficult when starting dialysis to get used to the changes to the diet but by doing so it will help in the long run. Fluid restriction is important too. This will include fluids such as gravy and soup not just water/tea etc. The dialysis nurses in the clinic should also be able to help your Mum with any diet queries too. Also go on the internet and look for Kidney Care UK as they have a lot of useful information for dialysis patients. Hope this helps. X

Bassetmommer profile image
BassetmommerNKF Ambassador

I am going to add that prepping food once a week for the week is a great benefit. I make a huge container of lettuce that I wash and then put paper towels in layers to keep it from getting mushy. I prep cukes. green and red peppers and rasishes when in season. All in little baggies. Sometime onion as well. Want a quick super? Egg white omlette with peppers and onions. Try wilted lettuce with chicken. Put a bed of leaf lettuces on the plate with oil and vinegar and garlic powder on it and then put the chicken on top and let it melt the lettuce. Yummy. Oatmeal is my go-to breakfast instead of processed cereals. I add fruit in season and then frozen fruit other times. I use natural quick oats and not the package kind with sugar. Herbs can make a blah meal much better, and you can eat the same thing and change up the flavor with herbs. Natural is best. Watch the labels for additives and salt in the stuff you buy. Do not buy flavored salts. Don't add salt to foods or cook with it. There is salt in almost everything. After a while of not eating salt, you won't miss it. If you like pasta, and who doesn't, try to find the best quality brand you can. We discovered that cheap pasta raises glucose levels more than the quality kind.

Someone said to stop Googling... I disagree. Check the nutritional value of foods with multiple sites. I then use a food app (MyFITNESSPAL) to log food and then I know what the levels are in my personal library.

Try to get your Mum to a renal dietician who knows about diabetes. It can be tricky, but totally doable to have both healthy and low carb meals. Also learn about potassium levels and what to watch out for. And we are here to answer any questions.

jodaer profile image
jodaer in reply to Bassetmommer

Just to clarify it was me that said stop googling. I was referring to what you can and can't eat with CKD. I agree that you should find out what is in food. Look at the FDA web site below. It tells you everything that is in food and even has some brands.

fdc.nal.usda.gov/fdc-app.ht...

Jk2023 profile image
Jk2023

Thank you everyone really appreciate the help :) I'm sure we will get the hang of it eventually I've been adding stuff to my asda basket online since 7 this smorning 😂 reading everything it's hard to get the hang of and ordered a load of fresh meat from our butchers today to so just need to think of stuff to have with it.

Jk2023 profile image
Jk2023

Is it normal for blood pressure to drop during diaylisis?

Dana66CKD profile image
Dana66CKD in reply to Jk2023

It can happen. Had a bout or two of low bp during session. Got nurses attention quickly and she adjusted. Felt better soon after. It's a gawd-awful feeling when bp drops suddenly and drastically. That was years ago in hospital, but was also much more fragile then, recovering from septicemia. Hope your loved one has good outcome 🙏

RonZone profile image
RonZone in reply to Jk2023

My blood pressure dropped over the first few months of starting Peritoneal Dialysis from the 140's down to 100, but now it's slowly creeping back up into the 130's. Not sure why. Going to ask my Neph about it tomorrow.

Darlenia profile image
Darlenia in reply to Jk2023

Oh Yes...it often drops blood pressure and dialysis can also change labs rather dramatically. My hubby had sky high blood pressure and he was immediately hospitalized and put on emergency dialysis. His blood pressure dropped like a rock. Nothing else worked.

As kidneys fail, water/toxins are no longer removed and this increases blood pressure - often leading to heart attacks an strokes and taking lives prematurely.

Ziggydoodah profile image
Ziggydoodah in reply to Jk2023

I have been on Haemodialysis for over a year and based in the UK. Unfortunately I can't advise you regarding the foods your mum should be eating etc as I'm not diabetic. What I can say, is your mums blood pressure will probably drop when she first starts dialysis. If she feels nauseous or just doesn't feel right, she MUST infirm a nurse. This us known as crashing and nobody seems to warn you about it. They might quickly refer to it in passing but most newbies crash for a few weeks at the start. Please tell her to tell them as soon as she feels unwell. She should not feel embarrassed as everyone experiences it. Also make sure she has something to occupy herself for four hours or she will be demented!! Nothing about dialysis is straightforward. It's like one step forward and ten back. You sound like a lively supportive daughter and believe me, your mum will need you. She will start to grieve for the life, she has left behind. However there is light at the end of the tunnel!! I really hope everything goes well. Also regarding dieticians in the NHS..I would research everything they tell you. I have not found their advice accurate. If i can be of any help, let me know. Wishing you both all the best x

Ziggydoodah profile image
Ziggydoodah in reply to Ziggydoodah

Excuse the spelling. Trying to do too many things at once 😳😳

There was a renal Dietician at the Fresenius center I went to for hemo. She had some really nice color handouts that she gave to patients. I was end stage at the time and I was given limits on the amount of sodium, phosphorus, and potassium that I was allowed. I remember my wife and I going through the grocery stores reading labels trying to find foods that were within range. It was a daunting task to say the least.

Jk2023 profile image
Jk2023 in reply to

I know it's so stressful trying to find the right stuff I'm sure it will be like second nature eventually

KidneyCoach profile image
KidneyCoachNKF Ambassador

It is an easy read. It's only available on kindle. The updated and revised edition is expected at end of year.I'm in my 22nd year of dialysis. Clinics vary here from providers on what is or isn't allowed (food or drink), heating blankets, phones, ice.

I've found most dietitians and social workers are fairly overloaded and often just spend as little time as possible.

Take a deep breath. You have our support. You are not alone.

Also check out kidneyschool.org

Better than going to dialysis corporations sites as this really has no agenda other than to educate.

Blessings

Blue red
Jk2023 profile image
Jk2023

Thank you everyone :) she seems to be okay she said she felt really strange everything went white then she was brought back round by a Dr she felt fine after she needs to go back in tomorrow I only thought it was 3 days a week but she's been told 4 days a week for the first week don't know if that's a normal thing ? She's also on blood pressure tablets which she was never told to stop taking but mentioned it to Dr today who took it off her also her potassium tablets and her sodium bicarbonate have been stopped to.

Ziggydoodah profile image
Ziggydoodah in reply to Jk2023

They can regulate her potassium and bicarbonate levels on the machine.

Jk2023 profile image
Jk2023

My mam has ended up with sepsis in her diayalsis neck line ! Was scarey she took bad on Thursday during diaylisis shivering feeling poorly etc high temp nurse took blood during diaylisis and sent her home a few hours later she was unresponsive at home can't believe she was sent home like that without waiting on results

bestmom24 profile image
bestmom24

She needs to watch her potassium and phosphorous. Of course, being diabetic she will also need to watch her sugars and carbs. as for salt, if her BP is high then yes, salt matters.

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