recently diagnosed

[Lehigh]

was just (last week) told by my doctor that my kidney numbers have dropped form 52 to 38 and that I am now in kidney failure. I am crushed by this news and don’t know how to cope. In addition to the kidney diagnosis I suffer from anxiety which only exacerbates the situation. I want to feel better, but I am tired, my ankles are swollen, I can’t think about anything but this situation. I don’t want to die (maybe somewhat dramatic), but I can’t live like this ! How do you manage the medical with the mental?

[wheezoids21]

Hi there Lehigh, Dont worry, at 38 youre not yet in kidney failure. It isnt termed failure until you get down to 15, which youre a ways off from yet. What was the time frame between 52 and 38? It could take years, if at all, for your kidneys to fail totally. Of course i dont know your full story, or what condition has caused this and im not a dr either. As for anxiety, the dr can prescribe you medication to help, and also counselling. It's not easy, and can be totally overwhelming at times, but there is help if you ask. X

[Bassetmommer NKF Ambassador]

Kidney failure is just that.... not working and you are far from that. Your kidneys are impaired. At this stage there is so much you can do to protect the remaining function of your kidneys, but it is up to you to get educated. There is a ton of materials out there on diet, exercise, medications and lifestyles that are beneficial to kidney function. I am sorry you are not dealing with this, but to be honest, having a pity party at this point is a waste of your energy. Find out what caused the decline. Most often it is something like a medication you are on, over the counter drugs like ibuprofen and others, blood pressure and diabetes not in control..... then change your life.

BTW, I have been at stage 4-5 (GFR between 18-13) for over four years and still ticking. Doesn't slow me down.

[Turtlepad513]

it can be scary, overwhelming, stressful, and anxiety producing when you are first diagnosed. I know it was for me. Please know you are not alone, and it doesn’t have to be the end of your story. There are things you can do, changes in diet, exercise, and other lifestyle changes can make a big difference. Small incremental changes can help you more easily stick to the changes.

It sucks to not feel good. I have found that doing things that bring me joy and definitely finding a supportive community has been a saving grace. It need not be family, it can be trusted friends, a social group, or in my case, a church family. whoever it is, they are the people you know you can call and they will stick by you.

The other options are reaching out to NKF’s Peer Mentor Program or a mental health counselor. Seeking help is not a weakness, learning how to manage a progressive chronic health condition like kidney disease is not easy.

[Beachgirl32]

Anxiety can bring you don’t cause you worry over everything small and big. But as other said doesn’t seem like you are in kidney failure yet you are not in late stage with those numbers. I’m in stage five been in it almost a year and still feel ok. But I know dialysis is around the corner for me.But I try to focus on positive.A lot has to do with our mind set . With your swollen feet did your doctor put you on lasix that would help with that. When my eGFR was 38 I was feeling pretty good . Yes check on diet and exercise like walking swimming can help with h bringing eGFR up sometimes or at least maintaining the number. Your doctor should not of told you that you are in kidney failure he should of told you that there are different stages leading to kidney failure next time you go write down questions you have, why did you say I’m in kidney failure when that doesn’t start until 15 percent is there anything I can do to bring my numbers up. That will depend a lot what cause your kidney disease.

[Hidden]

Hello Lehigh, my name is Larry. As wheezoids21 said, we don't know your whole story but can ask some questions and give some advice. Have you been or just start taking any NSAID drugs such as Aleve or Motrin (Ibuprofen)? They can bring your numbers down fairly rapidly over a period of months. Are you taking any ACE inhibitors like Lisinipril? That can cause swelling in the legs and feet. Again, how long was the period between the 52 and 38 readings?

[PecanSandie]

Has your doctor made any suggestions about what you should do next?

[RoxanneKidney]

My numbers have been from high 30s to high 50s. If you have changed your diet etc. Fo it now. That is a big factor. I have protein loss too and some sort of salt sentivity thing going. Hang in there and take control of everything you can.

[WYOAnne NKF Ambassador]

It's not a death sentence...you have impaired kidneys. Now you need to learn all you can about your kidneys, and their function. Knowledge helps so much with the fear that we all have experienced when we were first diagnosed. Start by going to the NKF website and learn all you can kidney.org

Davita has kidney classes you can sign up for - it's free.

Many on this site have been able to stabilize their CKD with diet. You have to watch your sodium (salt), potassium, phosphorus and protein. NKF does have a recipe app that helps. kidney.org/myfoodcoach

I am 23+ years post-transplant and have a great life.

Take care.

[6V53]

My best advice is make sure you continue to as much as you can... Family, fun, work etc, but when you need the rest or a break choose not to feel guilty. This disease is not laziness, it is a disease.

[KidneyCoach NKF Ambassador]

Best now to educate yourself. Þhis can help remove fear and worry and is very empowering. Check out Kidneyschool.org

National Kidney Foundation

American Kidney Fund

American Association for kidney patients

and finally read this via digital app

Hope this help

43 years ckd, 21 years dialysis

Face with blue, red

[barbara55109]

Here is a post I made a year ago with tips on finding a therapist. Mine helped me greatly.

In addition to the often seen plea of “how do I find a renal dietician” I’ve noticed some seeking help finding a therapist. Talking through our thoughts and feelings as we learn to accept/acknowledge/manage our situations can help ease the depression and anxiety that often accompany chronic health conditions. While EVERY therapist says they can help patients with depression and anxiety, there are therapists that specialize in helping people cope with medical illnesses. In the US, most health insurance plans cover mental health treatment. Your first stop should be your insurance plan to find out what therapists are in and out of your network. Get the entire list, not just the first person the member help desk gives you. There are several online search engines that can help narrow your search. Psychology Today and Good Therapy let you search by different key words. There are many different types of therapy. I suggest you look for therapists that specialize in Acceptance and Commitment (ACT), Mindfulness-Based, Solutions Based therapy. I personally did not find Cognitive Behavioral Therapy helpful, but many others do. There are also professional organizations for different types of therapy. Since I knew I wanted an ACT therapist I searched the member list of their professional organization for local therapists. Look for therapists who facilitate group programs for people with chronic pain or cancer. Read the descriptions provided on provider profiles. Look for key words like chronic illness, chronic pain and health psychology. If you find a few options, then make appointments to see 2 or 3 to find a person who is a good fit. Frankly, I’ll suffer through appointments with a surgeon who has terrible bedside manner if they are the best cutter in town, but therapy is different. Therapy isn’t helpful if you don’t find a therapist you can connect with. Hmm, drafting this I realize there is a need for a more indepth article to help CKD people find a therapist... Best wishes

[HisLittleOne]

I recommend that you watch videos from Dadvice on YouTube. He was in much more dangerous territory with his kidneys and was recommended to begin dialysis immediately by doctors but instead he went on a strict protocol to improve his kidney function and now many years later he is living a healthy life with stage 3 kidney function and is doing great! So don’t panic and think the worst…things can get better with some education and lifestyle changes. He has lots of helpful resources and information with kidney specialists talking in his programs to give reliable medical guidance for CKD patients. His channel has helped calm my anxiety and given me real help when I first learned about my kidney test results (that I panicked about initially four years ago).

(youtube.com/c/DADVICETV)

[zengirl64]

I feel for you in this awful situation. I'm putting positive intentions out to the universe that you find the help, answers, direction, and support that you need.

I know that feeling of "That's it, I'm done with all of this." It is so daunting and overwhelming. We carry on and persevere because we are survivors. Sometimes you have to just allow yourself a bit of time to experience the pain, sadness, anxiety, or fear.

I usually do this for a day or two and then I get back to surviving. I also see a good therapist once a week, as well as, accepting the support of family and friends.

I hope that you can find some peace in living with this.

[Vcr1406]

If your doctor told you that you are in kidney failure, you need another doctor. You are far from kidney failure. I understand your concern, but there are ways you can help yourself to keep your gfr from declining further. Remember the kidney function blood test is just a snapshot of your kidney function at a specific point in time. Were you fasting when the latest test was run? Were you hydrated? What meds were you taking that could have caused a decline in gfr? Try not to worry and do what you can to help yourself. The rest us up to God. Take care.