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[Bingo88]

Good morning Everyone. I have been on Healthunlocked for 3 years because in the same week nearly 4 years ago I found out I needed a pacemaker for low heart rate and also had severe copd. Which really worried me. But it was found out only when I was 43 that I was born with my 1 kidney being very small and not working very well. Now 25 years later I am now down to egfr of 16. And just happened to find this group in the A to z list of support groups this morning. Enjoying reading through the posts and advice. Hope you all have a good day. Brian

[madonbrew]

Hi Brian, There are lots of very knowledgeable people on this site, so hopefully someone will be along soon!

I have had ckd for 12 years or so now but have two kidneys and my egfr has somehow improved a bit over the yearsfrom 33 to 48. I'm not really sure how that's happened because I'm rubbish at looking after my diet. ...actually, people at my church prayed for my kidneys one evening and it's since then, so I do know!

Sorry to hear you're down to egfr 16. Hopefully someone will be along soon! Are you under a nephrologist?

[Bingo88 in reply to madonbrew]

Good morning. I am under one at the hospital but only seen him once. So pleased your doing so well. Brian

[Beachgirl32]

welcome Brian . I’m sure the pacemaker you have help you out. . How are you feeling with an efgr of 16 when I was at 16 I still felt ok some do sone don’t . Are you able to get on the transplant list? Again wanted to welcome you .

[Bingo88 in reply to Beachgirl32]

Thanks for the welcome. Yes I feel OK at present. Sometimes I can have a good night's sleep and then after having breakfast I can drop off to sleep again. I have other health problems and I am a retired person so the doctor said that it would be Dialysis or death eventually. Never mentioned transplant. Hope your keeping well. Brian

[Beachgirl32]

you may want to ask if your health problems prevent transplant you are at the right number to be put on that transplant list your efgr has to be 20 or under you can even get on the list if you are not on dialysis . I am 67 on the list a lot of people on here hav had a transplant in their 69 and 70 my transplant center age cut off is 71 some don’t have cut off. My kidney disease is polycystic kidney which is inherited . I have been on pd dialysis since February I do it all myself at home while I sleep.

[Bingo88 in reply to Beachgirl32]

I have another outpatients appointment in October so will ask. My Brother who is 61 said he would give me a kidney. But I also have a pacemaker and also have severe copd. And I am overweight. Obviously just getting out of breath if rushing too much on the flat means gym exercise I think would be pointless. Hills I just can't do now unless I stop 3 or 4 times to get my breath. I am still pretty ok going upto the 1st floor via the stairs Brian

[Beachgirl32 in reply to Bingo88]

I know someone who had a pacemaker they were still able to get a transplant not sure about copd I do know overweight you can not they would make you lose weight even the donor can not be overweight I had one person who wanted to donate but she was told she was to much overweight . You will know when it time for dialysis when your breath is labor when you want to take many naps . When you have edema these are signs of toxin build up .I did not go on dialysis until 8 percent . I was walking one to two mile at 10 percent but notice at 8 percent it was hard for me to do a mile .

[Bingo88 in reply to Beachgirl32]

Yes as I said it's difficult for me to walk that far with copd. So it's difficult to just loose weight by cutting down because I have cut down on my meals and food I eat

[Bassetmommer NKF Ambassador]

HI Bingo,

Welcome to our friendly group. Lots of great information and support here. Not sure if the Doctors have told you but with some diet changes you might be able to manage to put off dialysis until later. There is a lot of information on renal diet, and they do work. But I will wait to see if you are interested.

I was diagnosed way back, 17 years ago with CKD. Did little about it because at that time, there was little out there like meds or renal diets. Then in 2018. I was told I would be on dialysis in six months. Still not on it. Changed up my diet to be more whole foods, no processed foods, no salt, low fat ( for my weight) and low potassium AND...low carb. Sounds like not much left to eat. But there is. I love veggies and I love to cook. I have tons of ideas, willing to share.

You should see if a transplant is viable. I would not be surprised if the pacemaker would preclude you from getting one. Now is the time to learn about dialysis options so you can be prepared when the time comes. The thing about dialysis to keep in mind is that it is a permanent treatment, and you have to be committed to it. You can do a some of them at home and one in center. But they do not stop your life, then make life possible.

Ask any questions you have. We are here for you.

[Bingo88 in reply to Bassetmommer]

Thanks for your welcome Bassetmommer. Yes I would be interested in learning more about what to and not to eat. Technically I had trouble getting the app connected to get all my blood results to see how all my different levels are. So I rang the Kidney dietitian who said because of my other health problems she thought it best to refer me to another department to help with my weight management. Still waiting for an appointment. asked about my Pottassium and Phosphate levels and was told they were OK. I have another blood test on Tuesday. I have tried to do research myself on foods. But we are all individual. I like tomatoes which I was told I was ok with them because my potassium levels are ok at present. But would appreciate any help. Thank you. Brian

[Bassetmommer NKF Ambassador in reply to Bingo88]

ARRGGGHHHHHH you have no idea how being put off to another dietician made me mad. This was EXACTLY what they told me way back. They were totally focused on my weight and not the CKD. I am a MASTER of diets because I have tried so many for weight loss. I have tried Weight Watchers twice and gained weight each time. I worked with a certified dietician who went over my food journal back then and said she could not understand why I was not losing weight. Well, it's because we are not all the same. A renal diet is not the same as weight loss diets. It is much more complicated and tricky.

After seeing a renal dietician, I went on a renal diet in 2018 and lost 50 pounds which I kept off for the most part. It was so easy. Renal meant low protein, only chicken and turkey and some limited fish...NO RED MEAT, no tomatoes or tomatoes products because I did have high potassium, no potatoes, limited legumes like lentils, no bananas, no melons except watermelon, and limited of certain veggies that were high in potassium like Brussel sprouts. Be careful to manage your potassium because at a low GFR, it can change very quickly. Mine bounces differently with each lab. It was up to 5.7 at one point and it turned out to be a medication I was on, more than the food I was eating. Went off the med and it is 5.2.

What I did eat was veggies, salads and low carbs. I am diabetic, but I discovered certain foods raised my carbs, and stayed away from them. I learned to add herbs to things to replace salt. I was a pretzel eater and that had to stop. Potato chips or crisps as you call them are terrible as well as French Fries or Chips as you call them. Stay away from processed foods at all cost. Canned and frozen products have additives and salt. Learn to make meals and freeze leftovers. Sausages, or bangers, are bad as well as bacon. Canned soups are out.....way too much salt. Limiting your salt will be good for your heart. A trick for the sensation and taste of salt is to use vinegar. I was surprised with that but now have a spray bottle with balsamic vinegar in it I use on all sorts of food. I use low fat butter which taste like butter and has no additives. I use olive oil for my other fats. The purer the better. NO margarine.... terrible stuff. I switched to almond milk creamer for my coffee. I do eat cheese, but I watch it... I use it as my protein when I make a veggie dish. Dairy protein can be hard on the kidneys, so I limit any milk, ice cream or cheeses. EGGS... oh they are great for you. If you want to cut the fat and calories, and still make great eggs, use egg whites more than whole eggs. For example, a 3 egg omelet, I use two egg whites and one whole egg. Add veggies such as peppers and onions and you have a great meal. Fruits are apples and cherries. Strawberries and blue berries are good too but I do not like them. The way to make a sandwich really sing is to add apple slices to it. So low salt turkey, a thin slice of red onion, and then apple slices on your choice of bread with low fat mayo ( Hellman's makes a good low fat product that tastes good but is only 35 calories.....YUMMY! I use a tortilla product that is low carb, low salt and high fiber. It had only 50 calories per wrap. This also makes great egg wraps where I put scrambled eggs like above in them with a bit of low fat cream cheese like Laughing Cow. Super.

Stay hydrated with water. Limit tea and coffee as they are diuretics and can dehydrate you and stress the kidneys as well as the caffeine is not good for blood pressure.

This is a good place to start. If you have any questions, I love to talk food.

[Bingo88 in reply to Bassetmommer]

Thanks so much for all that information

[MissArtist]

Hello Brian I wish you well with your journey on keeping your kidney functioning - are you on dialysis? You probably should be ... I am a cancer and kidney failure patient for 4 years, I am on dialysis for life as I am not a transplant candidate if you are you must get a transplant if at all possible.... lots of good info and renal diet tips to help kidney function.

[Bingo88 in reply to MissArtist]

No Dialysis at present. Just had a visit from the kidney education department and left me with a folder telling me about my 2 options for Dialysis. My kidney disease was only found out when I was 43 years old. After investigating they found my left kidney had never fully grown from when I was born and 24 years ago it was only working to 25%. Obviously I had not been aware I was putting strain on my 1 good kidney for 43 plus years. So sorry to hear you are not able to go on the transplant list. Its a worry living with conditions that will not get any better. As I said in other replies I also have a pacemaker and severe copd. These 2 conditions were diagnosed in the same week which obviously was a big shock to the system. Hope you keep as well as possible. Brian

[MissArtist in reply to Bingo88]

Thank you Brian and same to you.......