Time is running out..

Disaster struck, just came out of the emergency room to have my self checked out for having shortness of breath and dizziness, blood test shows my creatine level has raised up to low 300s and my gfr is 21. drop from 40 4 weeks ago,,,now I'm stage 4 ,,xrays show some water build up on right lung area,,, and my consult with kidney doctor is 10days away,,,need to call my pcp to rush that appointment, ,,such a fast drop in kidney function, ,,er doctors says probably months away from dialysis, I'm ,,beyond belief, ,,was told about ckd stage 3b 5 weeks ago,,,,,,,now failing fast...

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  • Just fouND out ,my blood levels 2 wks ago was early stage 3,, this was my third test in 3 wks,,1st test 170 with 40gfr .2nd test 190 with 36gfr. 3rd 1.27 with 65gfr,,,then today stage 4 at the ER 308 with 21gfr,,,,pcp couldnt understand the reason for the spike in numbers,,got an appointment with a nephrologist tomorrow, ,,Has anyone had this type of experience with their ckd .Will i go back to stage 3a , with these strange symtoms i only take liprinol htzt for blood pressure, 40mg,,showing some of the symtoms, weakness, shortness of brea5, especially doing simple task,,rt. Flank pain, bad breath, dry mouth,,high blood with pills for 1 wk,,,then now low blood for 5 days now,,stop taking meds for blood preasure, Any and all reps greatly appreciated,,,,MOST IMPORTANT WHAT IMPORTANT QUESTIONS I NEED TO ASK nephrologist, ,,thanks

  • Firstly, I am so sorry you are going through this. I know this is overwhelming and scary. Please remember there are lots of people on here who are living productive happy lives on dialysis, so if it comes to that know that there is life after dialysis.

    That being said, I'm not a doctor and have not experienced your conditions, however, I am concerned to hear you went off blood pressure medicine. I hope you discussed this with your doctor or medical professional. I do understand your concern as your symptoms along with the low blood pressure could mean it is not the right dosage. My doctor did tell me that after going on blood pressure meds I would see a decrease in Kidney function, but not a drastic one although any medication can affect the kidneys this way.

    Make sure to review all medications and supplements with your doctor. Aspirin and ibuprofen can do a lot of damage to the kidneys so stay clear of those. Tylenol is the preferred pain killer of choice, but Review that with your doctor.

    In the meantime, make sure to cut out all caffeine, lower your salt intake and drink water. Do some mild exercise and meditation to help relax. I remember feeling extreme panic when I found out I had chronic kidney disease. These things have helped me cope better.

    I would also ask your doctor if it could be some kind of infection. Infections can cause the GFR to drop a lot. Mine dropped 10 points when I had shingles.i had similar symptoms to yours and ended up in the emergency room thinking I was having a heart attack. Shingles popped up a few weeks later. After I was better, my GFR went back up.

    Also, ask about doing a kidney biopsy to determine if it is indeed kidney disease causing this drop in gfr. I believe that is the most accurate way to determine if you have ckd and what type it is. You can also ask to have a urine test to determine if you have blood or protein in your urine which are also determining factors for kidney disease.

    Hopefully you are at the doctor now as I see this was posted 14 hours ago. Please keep us posted on how you are doing.

    Sending you blessings and positive healing energy.

  • Saw my nephrologist and he thinks the big drop is because I'm starving, myself,,,was advised to eat 3 healthy meals a day,drink 3 quarts water,daily,,,,take blood test in 4 days,,,see him in 6 days,,,to see results of renal function blood tests,,,hanging in there on this roller coaster ride,,,thanks for the reply

  • So glad you got in to see him. That is interesting. I had the the reverse issue. I was drinking so much water my doctor told me I was drowning myself and flushing out all the nutrients. It is a roller coaster ride! Nutrition is so important, but it can be overwhelming as you can't eat this and should eat that...I can understand where you might have skipped meals and it makes sense the body can't function properly without the correct amount of calories and proper food. I think it was mentioned, but check out Davita.com for meal plans for kidney patients. Healing thoughts for your new blood tests. :)

  • Thanks,,,my doctor stated 3 healthy meals,,,I asked him what do I eat,,he suggested look online ,told him I don't cook,I requested renal dietitian, he agreed,afterwards he decided against dietician for now since they il put on a pre dialysis,,diet,,,I ask if I have to use my blood test to determine what to eat,,,he say my blood test results were ok ,no restrictions, potassium and sodium was fine,,eat anything,,and I had low blood pressure, ,,

  • So the thing is, I got the same instructions from my doctor, but when they say eat anything, what they should be saying is eat the recommended daily allowences for foods. Most Americans (not sue where you live) eat too much salt, the saturated fats, sugar and high red meat protein diets.

    It is true, though, what the doctor said, as the programs are dietician programs are set up for late stage kidney patients. The doctors are not schooled in nutrition and can offer little advice. I work with a holistic doctor who told me to stay away from all oils except olive, coconut and macademia for cooking and olive oil and flax oil for salad dressings etc. These oils are high in Omega 3 which is good and other oils are high in Omega 6 which can cause inflamation.

    Maybe you might try learning to cook. Davita.com has some recipes though I don't think they are always the healthiest, it's a good place to start. davita.com/recipes/

    You might also consider cooking classes. This guy teaches online at your own pace. He's really good and funny too. webcookingclasses.com/

    Mostly, I eat fresh foods, lots of salads and fresh fruit. Cut back on processed and fast foods. After your taste buds change, you will notice processed foods are way too salty and sweet anyway and don't really taste good anymore. Your bank account will thank you as well and you'll have a lot more energy.

    There is so much great information on the internet, and so many great recipes. If you don't have a Pinterest account, you might consider getting one. I just type in "recipes for kidney disease" and a bunch of websites and recipes came up. Then you can save those and have easy access to them. pinterest.com/search/pins/?...[]=recipes%20for%20kidney%20disease%7Ctyped

    Start experimenting. Pretty soon, you might even find it fun. I'm enjoying food a lot more now that I'm eating more fresh meals.

    I remind myself that I am my own master and I

  • I hope you get some answers and reassurance from your medical team. I'm wishing you all the best.

  • Thank u,,,doc thinks I'm starving my kidneys, ,so 3 squares,,3 quarts water daily,,blood test in 4 days,,,to check results, thanks for responding

  • Your doing right to hurry your appointment with the specialist. As your in the US I'm not sure how these things work, but water in the lungs is never good, and needs to be dealt with to avoid strain on your heart. CKD is a fickle beast, changes can happen unexpectedly, depending on what caused the failure in the first place.

    You will adapt, and be able to work out what kind of dialysis is right for you, but in the mean time, hang in there and good luck..

  • Lung x-ray negative, ER doctor told me she saw something in xrays, ,but my nephrologist look at the xrays and it was clear as was the xray report,, was told that I was starving my kidneys because of my diet, tell to eat three healthy squares and drink 3 gallons of water a day, and to be retested in 4 days and I see him in 6, thanks for the reply

  • LarryGee, worrying as this must be, do try and stay positive. If they can sort the lung problem out quickly and rule out any other cause of the sudden drop in eGFR and rise in Creatinine (inflammation in the body can adversely affect kidney function), then with a bit of luck and a following wind perhaps you kidney function will improve or at least stabilise. Meanwhile, avoid all salt, drink plenty of water and reduce your intake of protein. Lots of good luck wishes and do come back and let us know how you get on.

  • Was told I'm starving mt kidneys,,instructed to eat 3 healthy meals and 3 quarts of water a day, blood tested in 4 days and we'll see doctor and 6, my nephrologist did not see anything in the X-ray it was clear, the report was clear to, no fluids,

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