Anxious over ckd

Hi. I am new here and just need some reassurance with how to handle this disease without constant worry and anxiety. I am at stage 3a and GFR is 52. Initially my renal numbers were normal but after receiving contrast, and two days later an increase in diuretics my GFR went from 65 to 40. It rebounded up to 55 and has been up and down since. I find I am anxious at the end of every day. More so if I am tired. Have fatigue, and swelling in hands and face, and due to malnutrition initially I have lost over 50 percent of my hair. Doctor says it will not grow back. Has anyone else experience hair loss. Also what are some coping tips to living with ckd without worries for the future. Thank you so very much for any advice, and wishing you all the best in living with ckd!

25 Replies

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  • It is a shocking way to learn your kidneys are in trouble I was shocked being told I have CKD the chronic bit means long term in this case so try not to look at it as a death sentence.Improve your fluid intake and keep protein foods down....eat a healthy diet.I am doing this as I cannot take the pills i have been told to take.As I see it none of us lives forever and we just need to step back and look at this as something we can live with if we take care.My hair has got very thin but I don't worry I just tie it back !!I hope this helps...try to stay positive and contact me whenever you want .

  • Thank you so much Freddyfrog for your kind advice. It is helpful to hear from others with Ckd and how they are coping. Wishing you the best.

  • Hi

    I do not understand some of your symptoms but i can assure you the best therepy is to keep calm.

    There are people out there with GFR below 15 and still surviving! I have read reports on here where people with stage 3 have been that way for 15years +.

    Change your diet, go vegitarian or keep animal protien to less than 60g per day.

    Eat fresh foods, cut out all ready meals and pre prepared foods in supermarkets etc

    Exercise lightly for 30 mins per day

    Cut out Salt and Sugar and avoid saturated fats.

    I have cut out alcahol and chocolate completely.

    Drink bottled water with low mineral content especially potasium and sodium levels. 1 - 2ltrs per day minimum.

    Avoid anything that increases BP - cafine sugar drinks etc, avoid high or whole grain foods as these are harder to digest and hold BP higher/longer whilst you body does so.

    I have improved my GFR and after 1 year doing this, i am almost out of immediate danger with a GFR of 60.

    I hope this helps, you have to completely change your lifestyle and outlook and you can survive this!

    Good luck. God bless.

  • Thank you CDH1. Your advice is much appreciated! Wow a GFR of 60! Great news! I have changed my lifestyle, now need to just learn to be calm. Wishing you GFRs over 60! Good luck!

  • @CDH1 What a lovely and practical message. Thank you for sharing your knowledge.

  • contrast will cause drop in kidney function & also diuretics my husbands renal consultants refused to give him any until he was near dialysis!

    his hair has gone thinner but he is 61 & he was in stage 3 for many years over 15 that we know of just try to stay calm & look after yourself eat a normal healthy diet unless told otherwise cut out salt if you can & keep yourself hydrated my husband still enjoys a glass of whiskey daily even though on dialysis 6 years!

  • Thank you for your response. My doctors have elected to keep me on the same diuretic only at half the dose. I use it as one of my BP medications. Wishing you and your husband the best.

  • do not take many diuretics at the sama time, some doctors want to bring the patient to death bed

    i have 5 years of ckd problem n my story is too long to write here last 16 th i had a big enconter but came back to life .

    my email id is wikibad@gmail.com , pl write me back my mail box i ll give all details how to be on your safe foods etc

    wush u good luck

  • Thank you for your response. Good luck to you also.

  • i hear ya with the anxieties of CKD...i found out i had it a year ago. my GFR presently is at 36, but went as low as 26, then up to 42, then in the middle....nerve-wracking. i also have been HIV for 35 years so this new addition was not welcome. i went crazy researching...attending "kidney smart classes", going to alternative medicine, acupuncture, radical diet change, and finally, a psychologist to help me cope. i reached a new place...the "fuck it place", as it's gonna go the way it's gonna go and i am alive and intend to live. i eat sensibly, but do not deprive myself anymore...and i drink "suplena", a kidney friendly shake loaded in nutrition for those with CKD. i refuse to allow this diagnosis to "own me".....faith helps also, as in God. i will NEVER do dialysis, so when my time comes, it comes.

  • Thank you Doretta. I like your new place! Your attitude that ckd will not "own you"! God Bless.

  • hi keep protein low avoid high fat food

    keep good levels of water intake ..2 ltrs

    daily...keep weight not heavy...to much weight gives kidneys more work..and most of all keep positive..all the best chris

  • Thank you Chris! I know the best thing is to keep positive. I am trying but often fail at it and get worried and anxious and do know worrying will not change anything.

  • This is not a suggestion directly related to the CKD: have you considered some form of coaching, counselling or mindfulness training for the anxiety and so on? As a general worry-pot (even before the renal situation), I have found meditation and mindfulness practice extremely useful. (In Traditional Chinese Medicine, there is a notion that excessive worry and brain exhaustion taxes the kidney meridian. All in all, learning to control stress responses and panic are handy life skills.) Also, I find having an arsenal of practical strategies fosters a sense of some control in an otherwise unpredictable situation. This is where coaching or counselling might help. Have you had a frank conversation with your doctor/ consultant? Every now and then I bring up the future and healthcare management. Even though none of us can really know what our tomorrows will hold, I take solace from the idea that we can work with our thoughts and actions today. Good luck!

  • Thank you for your suggestion. Had some councelling with social worker and somewhat helpful. Hearing from people like you who have CKD seem to be the most helpful. Need to find my arsenal of practical strategies! I also was a worry wart before diagnosed with ckd and must admit a control freak! Unfortunately there is no control over the progress of this disease.

  • Grams 70

    I think your hair loss could be related to your stress and anxiety about your health. Firstly, diuretics are a double edged sword: they help manage the oedema, but put strain on the kidneys. Avoid salty foods and drinks ( fizzy drinks contain salt) and processed foods. Avoid foods like soups, stews, gravy as they all are high in salt and fluid. Secondly, stage 3a is not a life sentence -try to eat a sensible balanced diet, take gentle exercise regularly.

    Finally, relax! I've been on dialysis for 26 years. I'm far from dead: I work, have a life and self care at home. Look after yourself, listen to your doctors and dieticians and enjoy life! Once your condition is more stable, there are things you can try to reverse your hair loss. Your doctor will be able to advise you. Take care.

  • Thank you for your kind advice. I believe it is related to my stress and diet. I think you are a very strong lady being so positive and enjoying life despite being on dialysis. Hope I can be strong and change my attitude.

  • Good morning, I am also new to this site, but have been impressed with how much I have learned from those that are so willing to share and respond. I have a GFR that was in the 30s...it has gotten higher, but still below what is considered 'normal'. My doctor says that for my age (70), weight, etc....that my numbers are low, but not alarming...needs to be monitored. You shared that you have been experiencing 'hair loss' and I was having a terrible time with hair loss, prior to being diagnosed. It was almost like I was on chemo...when I brushed my hair, or even put my fingers through my hair...scared me to death. Just want to report, that my hair HAS grown back and is just as thick as it was prior to going through whatever it was that brought me to a diagnosis of stage 3 ckd....I am working on my weight and have started swimming every day...it was a wake up call, for sure. Hope you are okay and that you get the assurance and information you need to get a grip on this often scary diagnosis....the more I read, the better I feel. Take care and keep coming back to this site, it is very helpful...

  • Thank you joannneflagg! You are the first person that I have heard from that had hair loss. I am hoping in time mine will also grow back even though my doctor said it probably will not. Thank you for sharing! It took me some time before I posted on here but everyone has been kind, helpful and supportive!

  • Grams70...support is such an important part of maintaining a healthy life. It is not easy for me to reach out, but on this site, it just seems that so many are so very nice! Grams70, I was hit with so many different issues all in one year, so the hair loss could have been a result of so many things, CKD, medications, high blood pressure and many more. Has your hair loss slowed down, do you have any further indications as to what is going on that is causing the loss. Stay strong, stay determined, stay healthy...sometimes we must just hold onto those thoughts and let our bodies catch up with us...take care!

  • Thank you so much for your kind support joanneflagg! I am also 70 and also was shocked as to what evolved concerning my health. Up to the time of having this acute injury I thought I was fine. But in actually I really wasn't! In looking back now over four years ago my GFR was at 57 and one reading of 54 and also had a previous kidney insult but was never informed by any of the doctors! So I did not change my life style. Overweight, had high blood pressure but always in 130 to 140 range, and not too active. I went into panic mode when I found out had ckd! Became stressed and anxious and lost my appetite and lost weight quickly. So am sure that all contributed to my hair loss. Unfortunately I continue to lose it. Soon time for wig shopping!

    I am so pleased you wrote and offered support! Sometimes you feel alone in this battle and it is nice to communicate with others who are experiencing the same issues of dealing with ckd! Your encouragement is much appreciated! You also stay strong and healthy! Take care too!

  • hi grams 70.do not worry..50 egfr lasted me over 40 years.eat low fat diet low red meat .keep fit your be ok..take care chris

  • Thanks Chris! This site provides so much support! Sometimes is difficult to find it in the everyday world. Diagnosed in August and at times having a hard time adjusting to all the changes especially diet. You take care too!

  • drink at least one litre of water every day , avoid pottasium rich foods , law sodium,and less proteins , never eat red meat, eat green apple every day ,guava and pine apple once a week also good.Dont eat plantain.

    try to maintain your 52 GFR.

    if u are adviced to take frusermide or lasix do so , it will not allow cratinine to gather in periperal blood , it will be flushed out.

    Do not allow your super EGO TO FADE AWAY,

    LONG LIVE DEAR FRIEND.

    as FAR AS I KNOW HAIR LOSS HAS NOTHING TO DO WITH ckd . may your drugs are interacting with skin,

    Go to link Davita ckd - glomerular filtration rate formula .

    hope u will write me back

  • Hi Kithsirid

    I am drinking water and have cut down on meat and protein. Thank you for your information. Yes my hair loss continues but I feel it is due to my anxiety and stress. I am trying to accept this ckd and trying to make the best of the situation. Best wishes for you too!

    Grams70

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