Hello - I have been off line for a few months as I have been in hospital (UK)
All the worry and stress from ckd. 4 diagnosis finally did it for me. I have managed to get my gfr up from 16 to 21 but the last appointment with nephrologist was useless - she didn't have any figures to work from because the two area hospitals won't talk to each other via their systems so she just said I was stable. I am now having to see a private nephrologist to interpret the figures to see how I am really doing.I always have 2 weetabix and blueberries for breakfast - followed by 2 spoons of chia pudding and mid morning some flax seed. I have a slice of rye bread with cheese for lunch with a glass of prune juice 2 dates and 1 fig. For tea I have salad - no other proteins. Is this diet too limited - I suffer with bad constipation as well and this diet helps. Our health system is broken and you really feel that you are by yourself. Also is a creatinine level of 420 bad - I can't get any answers.
Thanks for reading.
Written by
fartikins
To view profiles and participate in discussions please or .
Hi fartikins. I’m sorry you’re struggling so bad with this. I completely understand. My GFR was 22 in June of this year. Above, I’ve pasted a link that you might find helpful in answering your creatinine levels. Hope this helps. You’re in my thoughts and prayers. 💕🙏
Sorry to hear you are having these problems. It is horrible when you are let down by medical staff. They really should have your results to hand when speaking with you. Pleased to hear you have now found a nephrologist who can help you.
I have been through kidney failure and went on dialysis when my egfr was at 5%. Luckily have since had a transplant. The mayo clinic website is a good resource for all things kidney related and have lots of great ideas re food and nutrition at various stages of being a kidney patient. I found that drinking plenty of water helped me to feel better when my kidneys were failing too.
At one stage I found a private nutritionalist who helped with deciding which foods were best. She helped to personalise my diet according to other issues I also had.
On healthunlocked there are lots of people with similar experiences; also kidney charities have groups that can help when we need to discuss things.
Some hospitals have peer supporters, patients who have been through similar experiences when we need to talk. I have used each of these at some time or other and have often found hidden gems of advice. Hoping these ideas help.
Morning Fartikins.I am in Scotland and have been on dialysis for 7 months. I read your post and this could easily have been me, this time last year. I think family and medical staff underestimate, mental health in Kidney Disease. Your body is under a lot of stress so its inevitable, you will feel depressed. Have you downloaded the Patientview app? I have had it for 5 years and its been invaluable. It means YOU have access to YOUR test results. I know the NHS is chaos just now, however its an absolute disgrace, the way you are being treated. You are at a very stressful point, in your illness. You do not need the incompetent doctors. How are your potassium levels etc. I would research your levels etc and then workout your diet based on them. Fight for your health and the rite to have a doctir who knows what they are doing. Take it one day at a time it is overwhelming but you are stronger than you think. All the best. Hope you are keeping warm 😁 x
Noooooo ☹☹☹...i did not know this. I tend to just go straight to my results and not read anything else. I love patientview. At our dialysis unit, we get our bloods done on the first Thursday of the month. On Saturday a patient was asking about their potassium level results. The nurse said they had no results through yet and wasn't expecting them to be available until Wednesday. I actually had my new results on Patientview by Friday morning...17 hours after my bloods had been taken! Why do they have to change things!! Thanks for letting me know!.
Hello - thank you for all your helpful replies. My GP does not even have patient view so I cannot even check my results that way. I get offered a blood test every 6 months and get refused if I ask for one in between appointments. They say it is because of cost so I cannot check my own results. It has got me down so much - I have chronic insomnia . I am lucky if I get 5 hours sleep along with depression. I haven't been out for 6 months because I can't even put one foot in front of the other. The house has become my prison. I live my life in constant regret of what could have been. My GP knew for ages my GFR was going down but nothing was said - this was found during my diabetes check. The NHS has killed me.
Good grief, that is an absolute disgrace. The care from your medical professionals is appalling. You should be getting blood tests done at least once a month at this stage. I too was let down by my GP at the beginning. Back and forth getting tests done and no feedback. It was only because a locum noticed my results and phoned me to ask, why I hadn't been referred to a renal consultant. At the beginning I put my full trust in my doctors. Unfortunately experience has since taught me, be proactive in your own health. Insist on being seen. I thought Patientview was available to all rensl patients. I just went to the website and registered? I also think you need your haemoglobin levels checked. I was extremely low and nothing was done, until I complained to the dialysis nurse. She was shocked when she looked at my resukts and even thought I might need a blood transfusion. I had no energy and everything was an effort. Are you taking vitamin D? This will affect your mood and energy levels. I am so sorry this is happening to you. If I lived beside you, I would be dragging you to your GP and not leaving until they took action. Your treatment makes me so angry.
Thanks for your reply. I am now going to have to pay to see a private nephrologist to interpret my figures for me. The standard of care in the UK is appalling if you have a chronic illness. I have even heard that the old and infirm and very ill people are queuing up for an hour outside the GP,s for an appointment as you can't get through on the phone. It is about minus 8 degrees as well. Nurses strike tomorrow so the queue outside of A and E will get longer. Fancy having to Q outside the emergency room in the cold to be triaged before you can even get inside to sit on the floor - yes there are no chairs but loads of big foreign security men to keep ill people from stepping out of line - I really hate this country now.
fartikins, firstly let me say how sorry I am that you are being put through needless trauma on top of your health -there is no excuse for the lacks in your treatment.
Secondly, I believe from my own experience that it's not only your country discriminating against public patients. The world seems to be returning to only private patients receiving reasonable health care.
Thank goodness this website exists and we can communicate with each other.
Hello - thanks for your reply - all the best consultants are leaving the NHS and going private. You are left with medics who don't understand what you are talking about and they are all locums being paid a fortune to provide the cover. We really are a 3rd world country now when it comes to healthcare. Our nurses are all out on strike as well just to add to the burden. Just don't get sick in this country unless you find your way in from overseas.
When I have my bloods done I have the results the same day about 8 or 9 o'clock in the night on patient view. But now that changing over to patient knows best I don't know when I ve seeing them. I am stage 4 kidney function @21%
First of all, good for you for reaching out for help and support here and improving your Gfr. You are absolutely not alone. I can totally relate to the depression and feeling overwhelmed by the CKD diagnosis and everything that comes with it - medical help (or lack thereof), diet, understanding the numbers (so many numbers!) and feeling like you are rudderless in a sea of information. I am still unable to get an appt with a nephrologist, so that's great that you were able to find one, albeit a private one. Right now, I am just trying to figure out my food, so I found a nutritionist that is helping me navigate this based upon my numbers. I read so much on what and what not to eat, my head was spinning. This has helped me stay focused, along with this forum for additional help. I meet with her after every blood test to adjust the diet accordingly. Although I am still totally consumed and overwhelmed, I feel like I just need to trust that eating right (and drinking plenty of water) along with daily exercise is putting me on the right track. I am working on climbing out of the panic and depression and starting to find my footing back in life. Baby steps, but steps going forward, nonetheless. 🙏
I wish I could reach out and hug you. What a shit situation the NHS has become. Healthcare in the US isn't always the best but damn. I hate you have to deal with this on top of a chronic condition. Do you have any results from recent bloods? Can you go to Google and look up the result from that one test? I think there's a website called "labtestonline" or something like it that will help understand what the results mean. See if this helps: labtestsonline.org.uk/
First of all, you're not eating enough food. You need more fruit and veggies and carbs. I would almost bet you're anemic which can easily also contribute to your lack of energy and dark feelings. Since diet is the one thing we can control, everyone jumps on it and tightens up. Relax. You're eating like you're a fasting monk. And, I didn't hear anything about drinking water. Water is one of the prime issues in resolving constipation. And eat your prunes instead of just drinking juice. You need the fiber.
Sorry about the poor medical treatment. None of us have much control over that. But, we do have control over how we handle it. Use your anger to advocate for yourself rather than give up or just complain. Everybody seems to forget that mental health issues are just as important as diet and lab results when we're dealing with chronic kidney issues.
Lab work is important but can vary greatly from time to time as you well know. For now, go online and learn how to interpret your results as best you can. Then, you can adjust your diet accordingly. For example, if potassium is high find out what food you have to limit. Getting busy trying to help ourselves gets us stronger and helps keep those helpless feelings at bay.
I've had good kidney doctors and a few bad ones. I had anxiety and was panicky when my GFR dropped to 23. But, I took more control over how I handled things and have eventually gotten back to GFR 33. Its hard to know what to attribute the gain to, but I'm happier now and eating more of the foods that I used to enjoy but in very careful manner.
Thank you so much for your reply. I guess i do not eat much to try and keep my gfr in a reasonable state. Also I have no appetite - perhaps I am not doing myself any favours here with that attitude.
Rather than keeping your GFR in a reasonable state, best to keep YOU in reasonable state. Eat more, enjoy some foods. Its a numbers game. My GFR went down when I was on plant food diet?? Go figure. But, other issues caused the decline. Try to keep yourself happy. We're all still here. We can enjoy some part of the day. I'm betting on you
I watch a utube channel called Dadvicetv His name is James Fabin he has CKD and has lots of good information on kidneys and diet He talks about constipation and he uses Benefiber that helps also I’ve heard where psyllium husk helps constipation
Fartikins, re depression associated with CKD: I think you’ve made a good start reaching out for help on this forum; it shows you are looking for solutions and dealing with the isolation of ill health.
Depression (and pain) can be a matter of eliminating physical causes before attributing blame on the sufferer. I understand that negative habits and thoughts can be a self-fulfilling circle but being permanently dragged under by illness, food malabsorption, sleep lacks/disruptions, constant mistreatment/ignorance/negligence from people supposed to help you and even something as basic as lack of sunlight, can guarantee a person never making it out.
Perhaps light therapy could be of help? I’ve read that inhabitants of countries with less sunlight/long periods of darkness have a higher rate of depression, and the right intensity light lamps can make a difference.
On a minor(?) level, do you suffer from the cold? I do and wear thermals and even a dressing gown over day-clothes when unwell at home in winter. (It really does make a difference moving in the morning.) I know this may sound extreme to some but when you’re feeling ill and not moving as much, being cold can be another contributory factor to physical and mental difficulties.
Must admit, I make a point of watching comedy shows to give myself a lift.
No one can know everything you are going through, Fatikins, and hopefully you will find the right way for yourself.
Thanks for your reply - it is so hard to cope with the depression yet alone with the ckd. I am just blaming myself for all these happenings and I can't help going back and wishing I had done things better.
Depression can cause you to blame yourself and ruminate over the past, it's not the real you. Please be kind to yourself.
You are a human being and worthy with all your human failings and wonders.
Have you looked into getting a therapy light?
Just remembered about colour therapy where you place your favourite colour (or a favourite picture/landscape) right in front of you to look at. Would that be an option for you?
Please take care, fartikins. Sending you all my best wishes.
Hello - thanks so much for your reply. The depression is awful and I find myself blaming me for everything that has gone wrong. I could have stopped this kidney problem but hindsight is a wonderful thing and so are my gp,s who could have let me know earlier about my declining gfr - thanks covid.......
Yes its really third world now. I love looking at a picture of a daring beach rescue in Whitby - I bet I won't be seeing that again. My favourite colour is lilac.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
I am New Here and Need Some Help
Do I need a second opinion?
