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Newly diagnosed and terrified

Hello. I'm looking for some comfort because what I read on the internet about kidney disease is very bad. I had blood in the urine from the glomeruli of the kidneys in 2011 but we monitored it and I was doing very well things were quiet. Now suddenly it started to rise my creatinine and the percentage of my kidneys working is low as my nephrologist told me. I think I'm in stage 3 kidney disease. I'm doing tests all the time and I'm afraid that every time I go for blood tests my creatinine will be more and more up and I can't handle it all.I'm so scared it's progressing fast.I always shudder at illnesses and now something so serious is happening to me,it's a nightmare.I thought I was doing fine,I don't know what this new kidney problem is.Can can someone give me some advice to get courage for my disease? What would you say to someone who has just been diagnosed with kidney disease and is panicking? I am very sad and scared, I feel like my life is over and I am worried about my family how will I leave them

  1. Hi , my heart goes out to you. A new diagnosis can be really scary and nerve-wracking. There's a lot of information out there, which can be helpful at times, but also overwhelming. I think many people here can relate to your feelings and worries. I hope they'll chime in to share some words of encouragement as well or things they would have liked to know when first diagnosed.

    I also want to pass along a few articles, which you might be interested in:,, & Please know that the community is here for you! If you ever want to vent or are looking for any particular information, we're here 💚 Sending gentle hugs, Minel (Team Member)

    1. thank you

    2. I have a little bit of blood in my urine that the kidney doctor don't seemed to b concerned about. I have over active bladder so there are times they need some urine and I'm just not ready at the moment. I'm on no med for now for my OAB. I'm on medication for high cholesterol and kidney doc put me on a low dose high blood pressure med. I don't really have problems with my BP that docs are concerned about. Mine is never like 130/80. Mine fluctuates from like 110 to 145 as the High numbers. Low is 70 to 80 for low numbers. I've had 2 iron therapy infusions already iron is alot better. But I'm still weak and always tired

  2. Hi , I’m sorry to hear what your going through, I can understand it’s a difficult and stressful time for you right now and honestly what you feeling is totally understandable and first I would like to say there’s nothing wrong with feeling like your out of control, you can always get that back. My advice would be doing the test to check your stage, asking the doctors every question you can even the one sitting in the back of your mind and from there plan your treatment accordingly with the doctors as every stage of kidney disease is different but please do confirm aged the test if it’s stage 3 and you can plan your diet, lifestyle accordingly. It’s a big change for me it was learn to live and
    change my path

    Unfortunately kidney disease is a tough and long term condition it does change your life drastically but your life isn’t over it’s just a different path and extremely overwhelming and yes it will be hard journey but sitting down with your family who will be your support system is important and mostly important don’t stay silent if you need something or need help please do ask your support system or doctors. Please do advocate for yourself because kidney disease might feel like the end of the world but it is not you keep fighting. I thought it was the head of world for me at 16 years and now I’m 30 this year I just fighting for myself you can too.

    I’m thinking of you and please do keep us update on your journey.

    Thanks Sabad (team member)

    1. Hello again!Thank youvery much for the support!I feel likey doctor is not answering all my questions and that he is in a hurry. The condition of my kidneys has changed. That is, either the kidney disease I had got worse or some new nephritis appeared. I have written a lot of questions that I want him to answer and if he doesn't does it, I don't know, maybe the solution is to find another doctor.

    2. her doctor keeps repeating about her diet, sorry about typos

  3. Hello , I am so sorry you are going through this, but I understand. I will be 66 next month and I have a list of chronic illnesses. The last one was chronic kidney disease. Every time I get a new diagnosis, I think this is the end. I know how you feel -I go into panic mode immediately. I also searched the internet and thought the end was near.

    The first thing I want to say to you is to take a deep breath and take baby steps. The first thing is what you can do to improve this situation. I don't know about your diet, are you eating healthy, do you exercise, etc. Get a dietician if you have to. I "was" also a 3, but within 6 months my numbers have improved. When you go to the doctor write a long list of questions. I have so much to tell you, but this would turn into a book.

    I do want to share this with you. CKD is not a death sentence. My father will be 90 in March. He has been stage 4 for over 10 years. He still drives gets up every day and goes walking twice a day.

    I have a cousin who is stage 5 and has been on dialysis for 26 years. My youngest son is also stage 5 and does at-home dialysis. He has a full-time job and 3 kids, but doing very well.

    I just want to end with that having CKD does change your life. We have to make better lifestyle changes. It's normal to be terrified, but you are not alone.

    Have you seen a kidney doctor yet? We are here for you. Diane (Team Member)

    1. I will visit mykifney doctor tomorrow with my new lab tests!

  4. Thank your from myheart for your encouragement and your very inspirational messsage.I hope everyhing goes excellent with your health.I willl try to take care of mine more than before woth healthy eating and some exercice

    1. Hello , Let us know how the appointment goes tomorrow. We are all right there with you. know I will be waiting to hear from you. Diane (Team Member)

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