Any initial advice while I wait for my r... - Early CKD Support

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Any initial advice while I wait for my referral?

LeGrandFrizz
LeGrandFrizz

Hi, I'm new to the forum!

I am waiting for a referral to a specialist regarding my gradually decreasing egfr. I spoke to my GP today and he says that it is likely I won't see anyone for several months now, due to the lockdown. I have had a scan and it came back clear, so I am guessing I may have some kind of kidney disease.

My egfr counts have reduced over the following years from:

72 -2007

66- 2012

63 -2015

56 - 2019

55 - 2020

I feel a bit confused and worried about it as I don't really know what to expect and wondering if there is anything I can do with my lifestyle in the meantime? I am drinking more water, eating less salt and taking more exercise. I have given up alcohol - but the GP told me today I don't need to do this.

I am female, 44 years old - disposition leans towards being a fairly anxious person and it had already been a very stressful year, even before Covid reared it's ugly head! I have read that stress can have an effect?

Any advice on what I can expect/do would be gratefully received!

41 Replies
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I am age 78 and diagnosed at CKD 3b, 4 years ago. My eGFR had been declining for years. My Doctor gave me a diet appropriate for me based on blood work. I am restricted on sodium, phosphorus and potassium to certain amounts. Some might be restricted differently. The progression has slowed down. You have come to a good forum for support and information.

Thank you orangecity41 - I think it will be reassuring to see a specialist and get specific advice. I feel like I am in limbo at the moment with no real clue of what is causing this or what I should be doing.

You are welcome LeGrand Frizz. Once you get to a specialist and a treatment plan specifically for you, things should get better.

Can you please advise declining progress of your gfr

I know this is worrying - when I was told I had CKD - I was totally shocked and worried - this forum helped me a lot and by doing a little reasearch yourself- Although having said that be aware you can read far too much into things which makes your stress levels worse. I was told had CKD about two years ago - I was at the time 57 and considered myself very fit - I think my reading was around 57. Bottom line - after stressing out, thinking I was going to be on dialysis soon, even maybe having to have a kidney transplant- may even die, I then calmed myself down and- basically changed my diet. I also got Lee Hulls book which was very helpfull. I cut out Alcohol - well almost - still enjoyed the odd tipple. Cut out red meat and eat mostly meat substitute such as Quorn - oh and I did still have fish at least once a week - maybe the odd piece of chicken, drank at least 10 pints of water a day. Results were- my efgr went up to 63 or thereabouts - to be honest as I am writing this I am aware I cant remember the exact numbers- as I dont think about them anymore- don't get me wrong - I am not saying I don't care anymore - but I just dont stress about it - as we all know- stress is so bad for your health. I found cutting out red meat also meant I was low on zinc so I had to take zinc supplements. Here is another link to someone elses post that may help you - and see just by diet alone you can increase your efgr readings. Good luck !

healthunlocked.com/early-ck...

LeGrandFrizz
LeGrandFrizz in reply to Hul1

Thank you Hul1 - that is really helpful. It is reassuring to see that it is possible to raise your egfr reading. I will definitely buy the Lee Hulls book. Did you get any medical advice on what you should be eating specifically?

I have been in a dilemma over eating meat because my iron levels are very low due to fibroids (pitfall of being a woman in my forties). I have been taking supplements but am now unsure over how much red meat (if any) I should be eating. A lot of green veg contains phosphorous, which also seems to be a no for kidneys. The iron supplements have brought my levels up gradually but it is a very slow process indeed. There have been knock-on effects from the low iron, including hair loss.

I am fit and well apart from the kidneys - I found out about them by chance when I got some routine blood tests for the fibroids.

I'm going for a blood and urine test this afternoon. It will be interesting to see if my increased water consumption and lack of alcohol has had any effect.

Hul1
Hul1 in reply to LeGrandFrizz

When I was told I had CKD- basically I was told loose a few pounds- and eat sensibly that was it. A lot of doctors here in the UK do not like this labeling CKD just because your levels have dropped below 60 (that's when they first tell you you have CKD - well certainly above the age of 50. I never got told to stop eating any foods including those high in Phososphoros or Potassium, I did however cut out Avocados ( which I love and I am eating again now) and cut down on Potatoes. I was not told to cut these foods out- only through reading I decided to not eat them - "because I thought everyone labled with CKD was not supposed to eat that kind of stuff"- I was wrong. Right now my diet is not as good as what it has been recently - ( too much choclolate - and I love my bagels! You might want to tell your Gpabout the supplements you are taking too. -

Good luck with your results!

LeGrandFrizz
LeGrandFrizz in reply to Hul1

Thanks Hul1 - it's interesting to hear the advice you received. When I spoke to my GP yesterday he had very much the same advice. He didn't suggest cutting back on anything and even said a bit of booze would be fine! I am taking an iron supplement which I can't really do without and the doctor knows about, also a multivitamin. I hope the multivit won't be a problem - I feel like I need all the help I can get nutritionally!

Hul1
Hul1 in reply to LeGrandFrizz

No Worries- I see Rickhow has commented on your post - He is a great contributor to this forum - and he helped me alot with his posts when I first jumped on here - so if I can add also - listen to this guy he talks sense and ...he will help you make sense of it all.

It is easy for all of us to relate our situations and tell you not to worry, etc. But of course if you are anything like me, no matter what advice I receive, even if I know it is true and reliable, I will worry. GFR will decline as we age. Although your numbers, for your age, seems to be a more than usual decline. You mentioned your scan came back clear. So that is good. At least you can be confident there is no tumor, nor stones, no blockage, etc. Stress can contribute to decline. But you posted numbers for several years, so that is not likely the major cause. Without knowing your medications, your complete blood tests, it is hard to advise. Medications can cause decline. Supplements can cause decline. It is even possible that one kidney, not both, are in decline. Dehydration before a test, alcohol use, so many things can cause decline. Thyroid irregularities will cause a decline. But I assume your regular doctor checked your thyroid, urine, etc. It will be helpful to see the kidney doctor. But I have found they don't do much more than your regular doctor can. They do blood and urine tests, scans, and in the end advise diet restrictions. But there is no magic pill. They might spot a harmful medication you take, that your doctor does not recognize as harmful.

Is your blood pressure normal or increasingly worse.? Many bp medications hard kidney, while others help. Cholesterol medications can harm kidneys. Keep us informed.

LeGrandFrizz
LeGrandFrizz in reply to RickHow

I have checked my multi vitamin and found that it contains vitamin A and K - I think neither of which are supposed to be good for kidneys? I will have to stop taking it for the time being. This is a shame because it has lots of other vitamins which are very beneficial.

RickHow
RickHow in reply to LeGrandFrizz

I take a multi vitamin every day. Yes you will hear that "this" vitamin, or "that" vitamin is good, or bad. But first of all don't just take that as 100% true. Your body needs vitamins. Now, it will all depend on your blood test results , urine results, what one's you need more of or less of, or if a daily vitamin is sufficient. And read your label on your vitamins. Most list a lot of vitamins as content, but when you look at how much of your daily requirements, the one a day vitamin does not contain excessive nor harmful amounts. When you meet with the kidney doctor they will advise you. Your appointment is sooner rather than later. Don't make a lot of drastic changes without seeing the kidney doctor first. You might think it wise to drop the vitamin because it contains A or K. BUT you might be eliminating some other needed vitamin, contained in that daily vitatmin, that your body needs badly. I don't see how you can do yourself any harm just taking a one a day vitamin. Don't self medicate. Wait for the doctor.

LeGrandFrizz
LeGrandFrizz in reply to RickHow

Thank you - sensible advice.

Thanks RickHow. I am wondering if I should stop taking my multivitamin for now? I don't think an iron supplement could cause problems - and my gp is aware of that one. I don't take any other medications.

I am not overweight and am active with good blood pressure and cholesterol - no thyroid problems either.

Just got back from a very ghostly quiet hospital (it's a small one with no a&e) - very strange not to have to wait ages for my number to come up!

Will post my results when I have them.

Hi LeGrandFrizz! Welcome to the forum! Well, if in fact your kidneys are somewhat in a weakened state, there are some diet and exercise changes you can make (if you haven’t already done these). Drinking more water daily is definitely a good one. That can help to improve your GFR. But as well as limiting or omitting high sodium foods from your diet, you should also limit foods that are high in potassium and phosphorus, along with limiting your intake of protein.

I’m not saying to shut these down completely, just limit them. Many people here tend to lean toward a plant-based diet plan more often, as vegetarian diets tend to go easier on the kidneys. A high fibre diet plan is good for those with CKD (well, good for anyone, really).

Another tip with regard to exercise is, nothing overly strenuous, as this can cause creatinine to go up when the muscles release proteins into the bloodstream. Especially weight-lifting. This is a no-no. Lol! Walking is what is usually recommended as more kidney-friendly. Also, try to keep away from anti inflammatory meds (even over-the-counter brands such as Advil, Motrin and Aleve). For pain relief, Tylenol would be a better choice providing you have no liver issues or allergies to acetaminophen.

There are some websites that you can visit also that you may find helpful like DaVita.com for diet plans, healthy CKD food lists and recipes, and another I’ve heard mentioned here is kidneyschool.org.

It’s really never too soon to make the changes to our lifestyle that may help to slow down any progression of the disease. The idea on this journey, is to put off the ultimate result, which for most people is the “D” word (dialysis). If you can manage to make these changes to your lifestyle, even at this early stage, you’ll be better off.

As far as stress goes, I would say, yes, it can impact kidney disease, much as it can affect the body in many different negative ways. Always speak with your doctor regarding any questions or concerns you may have as she / he can steer you better using the results of your bloodwork. And also request a referral to a renal dietician (even over the telephone) as they are more knowledgeable and can be beneficial to you.

And also, no smoking, or drinking (you’ve already done that), limit caffeine, chocolate, nuts, seeds, and whole grains. Also, with regard to medications, try to discuss with your doctor any prescribed drugs that contain steroids or certain antibiotics. Sometimes these can do damage to the kidneys as well.

Sorry this post is rather long, but I hope it helps you. And once again, welcome to the forum! Please keep us posted on how you come along. We’re always here for you! All my best! God bless. 😊👍🙏

Hi Sammi_Munk - thank you for such a warm welcome and the very helpful advice!

I would be happy to change to a mainly plant based diet. My worry is how to manage my low iron levels while doing that. Many of the green veg that contains iron also contains phosphorous. It makes things very complicated. I will have a look at the DaVita website.

Regarding exercise - I have taken up jogging over the last couple of months. I really enjoy it and find it has a fantastic effect on my mental health. Do you think between 30 mins to an hour of jogging is too much and would it be classed as heavy exercise? I would be so sad to give it up.

Thank you once again for taking the time to give me some really helpful advice. I am very happy to have found this board!

Hi again! Well, from the research that I’ve done online, walking is usually what is suggested. I think the rationale is, the harder the heart gets pumping, the more creatine it pumps into the bloodstream, which in turn raises creatinine levels as well.

I’m not sure if your doctor would be able to arrange a telephone consultation for you in order to better advise you on this. I do understand though. It would be sad to give jogging up. I personally don’t believe that you would have to give it up completely, but maybe just drop it down to 2 or 3 times a week and walk on the other days in between. As I say, only a doctor could answer that with a true degree of certainty. Or, you may be able ask a physiotherapist. This is something they may be able to help you with as well.

I can’t jog because of some light bone and joint issues, but when I walk, I tend to automatically walk with some degree of speed in order to feel as though I’m getting a little workout. It does feel great, but I always have to remind myself to slow it down.

Regarding the low iron issues, it’s true that many vegetables that are higher in iron are also higher in phosphorus, but from what I’ve read recently, the phosphorus (with regard to beans, anyway) also contain phytic acid, which apparently binds most of the phosphorus, preventing it from being absorbed into your system. Once again, I guess this would be a question that would be better answered by your doctor. I certainly don’t have a medical degree! Lol!

Also, if your iron is really low, perhaps iron supplements might be a better choice. But iron supplements do need to be taken with some form of vitamin C (like orange, cranberry or tomato juices) in order for your body to have an easier time absorbing it. Without the vitamin C, it’s like you’ve done nothing at all. Believe me, I’ve been there! Lol! And, from what I’ve read lately, this is also true with vegetables and legumes (beans, lentils) that are high in iron as well.

You’re so right. It can be very complicated! It’s all a part of the journey, I guess. And you’re also right about this forum. I feel so blessed to have found it also. You’re going find plenty of very wise and helpful advice here, as I have. We don’t try to diagnose anything, but we have our experiences to share and hopefully, provide some ease, help and support when things get us down.

Well, I look forward to reading more of your posts! I hope this helps a little. All my best to you! God bless. 😊👍🙏

Thanks Sammi_N_Munk. I will keep doing what I have been doing with the running for the time being but will cut down to three times a week. I love walking so no problem to also do that.

I wish I could see a doctor sooner so I could be clearer on what I need to do!

Yeah. This is quite a crazy time to try and get proper medical help, isn’t it? I’m not sure but, I’ve heard that some doctors will do telephone consultations. Do you know if your family physician might offer that option? If so, hopefully, she / he could advise you on an appropriate exercise regimen, and direct you to a renal dietician for some diet suggestions.

I hope things work out to your expectations. Keep me posted and do take care of yourself! All my best! God bless. 😊👍

I'm in the UK. We see a GP for basic help and get referred to specialists for more detailed advice and treatment. I spoke to my GP a couple of days ago and he was only able to give a very general opinion. When I asked him about diet, all he would say is eat a healthy balanced diet - he didn't advice cutting anything out though he did say he could see my potassium levels were fine and there should be no problem drinking orange juice with my iron supplement. He told me it would be at least a couple of months before I see someone as all 'non essential' referrals have been put on hold for the time being - which I completely understand.

It will be interesting to see my blood test results. If they have gone down I think I might begin to feel a bit more anxious. I'm really hoping my increased water consumption has helped.

Thanks for all the advice - you have been very helpful!

So, the most important thing I can tell you is that every kidney patient is different than another. The kidneys are complicated organs, and why and how each of us is impacted are different. I would recommend that you start reading kidney diet books, and learning about the kidneys and how they work. Are you Diabetic? Do you have High Blood Pressure? Are you anemic? Do you exercise and are you over weight? Do you drink enough fluids? These are all things that may or may not effect the kidneys, plus what kind of diet you are following. Do you consume high sodium foods, high protein, fast food daily, high potassium and or phosphorus? These are all dietary issues that may or may not effect the kidneys. With all that said only a doctor can give you actual medical advice, but it doesn't mean you can't become a knowledgeable patient.

Thanks HealthBuddyMelissa - I have ordered two books by Lee Hull - one is an overview on kidney disease and the other is recipes. I'm hoping they will answer some of my questions. At the moment it's a bit frustrating as at every meal I'll remember something I 'shouldn't' eat!

Very true, HealthBuddyMelissa,

The key points are that all of us are different and our bodies respond differently to foods, medications, supplements and combinations.

The first line of discussion should be with the attending physicians to put together an action plan best for each patient including the communication of all lab and test results.

Thanks for reiterating this.

Bet

Agreed!

Agree Health Buddy, that we have different reasons for CKD and our treatments may be different, and knowledge is important.

It is frustrating, but you will learn and you really need to learn to eat according to your labs. If your labs are normal, except for eGFR then you may only need to limit sodium, depending on any other health conditions you may have. For example, I am not Diabetic nor do I have High Blood Pressure, so I was recommended to only limit Sodium intake. As for Protein I basically watch my urine for foamy or bubbly urine. If my urine is foamy or bubbly that means I am spilling protein into my urine. In other words I consumed more than my body needed and it was spilled into my urine. This is not a perfect method, but it was my only symptom for many years, and it was over looked as a kidney problem.

I can relate to the foamy urine also. I’m actually going through that right now (I’ve been bad in these recent months) so I’ve lessened my protein intake to 4 egg whites a day with plenty of veggies, and I’m drinking more water in an effort to flush it out a little quicker. I’m hoping it works. I’ve also been getting headaches lately as well. Oh well. 😊👍

The headaches can be from dehydration or even possibly toxins accumulating in the body. Of course it could be a host of other things too, such as high blood pressure, tired, allergies, sinuses, a pulled muscle, stress, etc.

Yeah. This is all true. And honestly, almost everything you mentioned could very well apply to me. My doctor’s have always told me that I’m dehydrated. The trouble with that is I feel as though I drink quite a bit. And, my diet is so bland, I have very little desire to drink as much as I probably should. But I don’t feel like I’m dehydrated. Also, I worry about my edema getting worse. My creatinine is high which, from the research I’ve been doing, is caused by high creatinine so I’m working to bring it down. I’ve been drinking as much as I can without worsening the fluid retention. Still have a lot of work to do. Lol.

Thank you so much Melissa, for your help. I appreciate it. 😊👍

Thanks - that's really useful to know - especially about the protein. Do you mind me asking what your egfr is and if you managed to raise it at all? Also, Do you drink alcohol?

I have no other health conditions - blood pressure fine, not diabetic etc.

I'll read the books and try not to worry too much in the mean time.

I would have to check for sure, but when my kidney first failed I would say I was probably stage 4, and I didn't go to doctor right away for reasons I won't go into. So, I was probably close to stage 5 honestly, I was just above stage 4 at stage 3 when I first went. Now I maintain stage 3 egfr 49-59. I would love to get back to stage 2 but doctor is doubtful due to scar tissue on my kidney. I do not drink alcohol.

Welcome LeGrandFizz!

You have joined a wonderful community of knowledgeable, compassionate and supportive people.

As I look below, you have received numerous caring answers and support.

The words kidney issue can be frightening and perplexing as to why and what to do when you first hear them.

I would ask your GP or Consultant about your GFR and it's fluctuations. Every case is different but it can be attended to. Unfortunately, there is no cure for kidney issues but stopping progression of the issue is what can be done.

The strongest first line support must be through a medical team who communicates openly and plainly with both you and each other is very important.

Remember that you can always seek a second opinion if you feel that your GP or Consultant are not pointing you in the proper direction or taking the time to answer questions or explain clearly.

I would print out your lab results prior to visits and check off any areas that flag and make them a point of discussion before leaving the office.

In any case, limiting sodium, and avoiding processed foods such as canned soups, bacon and cold cuts are a good idea as well as red meats. Limiting dairy and choosing well are important.

Fresh or fresh frozen vegetables are still the healthiest, salads as well as fresh fruits such as strawberries, blueberries and apples. This applies in many areas of life.

The members below have given you some great suggestions, but diet should be based on labs as each person is different. If you can get to see the dietician in your local hospital or make an appointment to see one, I feel that a plan can be offered which is best for you.

In the case of iron, fortified cereals such as Cream of Wheat and a touch of Grapenuts were recommended to me by my nephrologist as I am a plant based eater.

I won't tell you not to be stressed at this time as it is one of the most uncertain ones in all of our lives, but I will tell you to carefully evaluate what you can and can't control in your life as stress is part of it and not good for anyone in high doses.

Things will all work out in time.

Please feel free to reach out to any of us at any time as we will always reach back.

Stay strong and safe.

Bet

Thank you for the helpful advice Bet117! My GP has made it clear that he has given me all the advice he can and I now have to wait to see a specialist, which will be at least a couple of months. In the meantime, I need to work out what are the best moderate adjustments I can make for myself without any further medical guidance. Your advice, and the others on the board has been very useful.

Out of interest, do you add milk to your fortified cereal or do you use a plant based milk substitute? For breakfast I have been eating porridge made with water, berries and honey with a small splash of milk. I think I should switch to a more iron rich cereal, as you suggest.

I'm 66 and crash landed at 8% now 24 % over a year. No diet as it was an injury caused by medication. I find I get tired but am ok. So try not to worry too much and I do have the odd glass of wine or 2 .And No bananas, grapes and baked beans. If you need vitamins then you'll be prescribed them I take Ad-cal and injections of B12 the vitamins might be useless as described by Dr Tukeman on the BBC your buying expensive pee. Just a thought ! x

Thanks Medway-lady. I have noticed that a lot of people say they have an initial time of panic/gloom and then they become more relaxed. I'm still trying to get my head around it and have no proper information, which is not helping!

Just everything is so weird at the moment but to be honest life has changed a bit but over the year its not been so bad. I was given huge doses of steroids at first to see if it improved things but it didn't. And make sure you drink a couple of pints a day of water or squash etc as it did help me. I can do 2 kilometres in 12 minutes on the trainer and do a bit of weights and that helps as well.

Hello medway-lady. Forgive me for being somewhat of a “butt-in-sky” but, I just wanted to suggest to you to consult with your medical care team on the weight-lifting. You may have done so already, and if that is the case, then I apologize to you for bothering you with this, but according to some online research that I’ve done, weight-lifting is a no-no. The type of exercise that is usually suggested for CKD patients is less strenuous, like walking. They say that this is because the muscles release creatine into the blood causing the creatinine levels to go up. I guess it would be best to check with your nephrologist to be sure. As you say, everyone is different. 😊👍

I did ask and not going mad, its light weights not the stuff body builders do and my Nephrologist was really pleased as this time last year I could not shower on my own and we had a seat for me. I usually do 15 minutes on the trainer but have worked up slowly to this over months. I did a lung fitness course last year and my nephrologist did say that he thought lung health was really important. I do walk but under shielding the home gym became much more important. Thank you though, it is a valid thing to think about, I also have Rheumatoid so have to keep moving or do seise up. Its a balancing act really.x All my bloods are good except for the eGFR as was really healthy until a medical mistake was made so I don't have any disease but do have 25% kidney death and the eGFR is thought not to go higher and no medication either. I they not to be bitter though.

Yeah, I can also relate to the arthritic stuff. I have osteoarthritis and chronic gout. So I get it, believe me. And you’re absolutely right that the exercise is important for proper lung function. I can also relate to the shower stuff as well. I sometimes have to sit too. I’m glad though that the exercising has been helping you through. It helps me too.

With regard to eGFR, I’ve always been told that keeping well hydrated with a good daily water intake is supposed to improve that. It is a number that fluctuates, but drinking water and flushing the kidneys is supposed to be helpful with that. Check with your doctor on how much fluid per day is the right amount for you. I’m told it can be different for everyone.

Do keep well, dear. All my best to you, and much continued success along your journey. God bless. 🙏😊👍

I have just downloaded MyFitnessPal - it looks like it could be quite useful for tracking nutrition (though no phosphorous count) a does anyone find this or other diet trackers useful?

Just had a conversation with my GP - my blood and urine tests are back.

My eGFR has gone down from 55 to 53 since January. My albumin level has gone down from 54 in January to 'below' 3'. The eGFR score is a shock - I felt a bit off colour last week (I think I had a mild bout of food poisoning), I'm wondering if that could have an effect? He said that the albumin level was good news and I'm glad it has gone down but the internet tells me low albumin levels can also be an issue?

He is going to send the full test results over. I am going to see if my husbands private health cover from work might cover seeing someone privately. I am getting to the point now where I am almost scared to eat anything for fear it might be the wrong thing.

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