Just starting...

[SpookJay]

Idk how to go about this, so Im just going to lay it out there. Im 28 and was just told last Friday I have CKD. The ER I went to the last couple of months had been taking blood samples and they post it all on a website. Before going home, the doctor causally told me I have CKD. I had no idea what it was and started to google it when I got home. I had been dealing with what I thought was high blood pressure and anxiety. Every time I got to the ER though, they would tell me Im fine. So I finally got insurance from my new job at the beginning of the month. Went in Friday to work, still in training, and ended up calling EMS. My BP was high at first, but went down while they were there. Decided to see a family doctor. He gave me anti-anxiety meds. Took them, the panic attack pill made me feel really off. Went to the ER and found out. Sorry that was kinda everywhere. So, the more I found out about CKD, the more down I felt. I didnt feel well, cause the panic pill lasted for two days. Made me sleep alot. Didnt eat right either, because after researching that almost everything effects your kidneys. I was scared to eat. Looked at my test results and found my GFR is at 60/59. One of the test showed 59. Sunday, I felt faint and disoriented when walking in the grocery store with my girl. Felt off Monday, had started taking iron pills encase I was becoming anemic. Would feel okay for a while and then the haziness and headache would return. Tuesday, today, suppose to go back to work. Get in the shower, all the sudden I am breathing, but it feels like Im only catching the last part of my breath. Headache and feeling extremely cold follow after. I lay down and give up on going in. I got an appointment Thursday to see a doctor, hopefully get a better idea how to get a few more years out of this vessel. My questions, am I crazy? Am I causing myself this disorientation and headaches or do people have problems at this level. I know there are others with it worse and a week ago I was normal and active. I am scared... the tasting metal in your mouth, dialysis, just pain. Constant fatigue, not being able to provide. I know Im more then likely blowing this out of proportion. I just never been around anyone that had this issue. Not sure what to expect. Im afraid ill lose my job because its all in my head. I really was excited about working there. Was stuck in a office job where no one cared about me and my new job. The VPs were in the lobby when EMS came, even told me my health came first. I probably wont finish training like I should and have no idea if I will lose my job because of it. Was suppose to start my actual schedule on Friday. Ty to anyone that reads this. Sorry for unloading, just not sure where else to turn. For everyone here, I hope the best for all of you. I know our bodies break down, some are luckier then others. This just seems like a rough way to have to go out.

[SpookJay]

Sorry for the dialysis tag, first post and when I try to remove it. The website says the post was flagged as inappropriate. Guessing something wrong with the coding of the site.

[Rosemary201]

Hi SpookJay.

Take a deep breath. I think you'll feel better when you realize that you among millions. I certainly did. Everybody is different. However, my GFR is 35 & I feel fine.

I have IgA & high blood pressure... all of it is pretty silent for me.

I work full time & a full time parent as well.

It's all very doable. Don't lose your job over this. 😉

I'm glad you found this forum

I'm new to it too... but it's a nice resource.

I hope u feel better in & out.

[SpookJay in reply to Rosemary201]

Ty, I guess its just me then. Need to toughen up a bit. I appreciate the kind words.

[Hidden]

Welcome. You're not alone. You've done well to find this site so fast. A lot of great people here will let you know which end is up and how to deal with all of your issues.

Let me start by giving you some websites to help you start this journey. The more you learn the better equipped you will be to handle anything with CKD. By the way, your GFR of 59/60 is indicative of very early stages and not something that will end badly for you. There is not a cure but there are lots of things to do that help slow it down and make yourself as healthy as can be.

American Association of Kidney Patients aakp.org

National Kidney Foundation kidney.org

Davita.com

Kidneysmart.com

Come back anytime with questions and you'll easily find someone to answer or guide you to the answers.

[SpookJay in reply to Hidden]

Ty, I feel better just knowing there is support.

[Kathryn471 in reply to Hidden]

What do you think of kidney buzz ? I had to unsubscribe. Thank You.

[Hidden in reply to Kathryn471]

Hi,

I like Kidney Buzz because they list many current articles that impact people with CKD and it also has a stark and very real impact when you read them. I didn't include it in the initial list I provided because there is so much more they had to learn first. Just my opinion but the site is a good one. Why did you have to unsubscribe? I don't need to know if the reasons were personal. Just my curiosity.

[Charlene_Coxhead]

Hi Spookjay

Let me start by saying don't panic. With a gfr of 59 you should definitely be symptom free. You have to look at it that you have over 50% function in your kidney which is really good most people have lower than they expect.

The internet can be scary but look at this:-

A GFR of 60 or higher is in the normal range. A GFR below 60 may mean you have kidney disease. A GFR of 15 or lower may mean kidney failure.

To me and I'm know doctor your symptoms do not marry with CKD. I think you need to go back and work out what's causing the anxiety and rather than the doctor giving you a pill which has made you worse you need to speak to some one to get the route of it.

Regarding your diet as long as you eat a well balanced diet everything in moderation you will be fine. Stop smoking if you do and reduce caffeine intake but that the same even if you don't have ckd.

I found out my renal function was 22% 15 years ago as I had begun to feel unwell. Now it's 7%, I have my fistula ready to start dialysis but don't have a date and coping day to day.

Please stop worrying I know it's hard but your glass really is over half full. People after they've had a transplant can only ever hope their function gets to that.

Don't ever feel alone bet really go back to the doctor

Charlene

[gowusu]

HI spookJay

You sound so much like me when i was diagnosed ckd stage 3a. Egfr was 58 last year September. I actually feel bad telling you not to worry. I was sick worried myself😂 I read anything online talking about ckd. But to assure you of so much help from this forum, you must understand that you are at the right place. Try and relax. You can live with the condition for a long time. Eat healthy kidney friendly diet and exercise more. Keep your blood pressure in control. I wish you all the best. Sending prayers your way. Cheers!!!

[Julesboz]

Hi, sorry you've just got this news. I was diagnosed with stage 3 CKD a few months ago and I don't have any of the risk factors. My GFR is 53. I just wanted to reassure you a bit. I like you freaked out a bit when I found out and did loads of research, but since then I've spoken to several people with the condition and doctors and have completely calmed down. My doctor told me that they see hundreds of people in their practise every single week who now fall into the CKD diagnosis and the only reason is that it's screened for now. In the past we would have been blissfully ignorant of it. AND the vast majority of people who have early stage CKD never progress to dialysis stage. I've looked at my past blood tests and it turns out that I've actually had it for over 10 years but no-one ever told me and my GFR has only dropped from 60 to 53 in that time, so I really wouldn't panic!

However I would say that it's a good thing to be aware of. Now you know you need to look after yourself. Try to eat healthily, real food not too much processed as processed tends to have lots of salt and phosphates. Exercise, keep your weight to a good level and, above all, relax!

In answer to your other questions about symptoms. Should we be having symptoms at this stage? Most doctors will tell you no, but I've spoken to another one who told me that you are prone to anaemia with CKD (especially if you're female). I've actually had anaemia recently so I'm putting that down to CKD, whether I'm right or not I don't know. I also have water retention in my feet and other people I've spoken to all say their doctors say they shouldn't have symptoms at stage 3 but they do, although they tend to be mild. People aren't robots, so some people will and some people won't, is my view. If you are getting chest pains, weakness, tiredness, metallic taste in the mouth and breathlessness, it could be anxiety but I'd also get yourself checked for anaemia as they are very common symptoms for anaemia. I certainly felt absolutely dreadful when I was anaemic! Bear in mind I'm not a doctor, just someone who's been through this, but I'd certainly discuss this with your doctor.k

Anyway, good luck and really don't worry

[Zazzel]

So much good advice on here and so many wonderful people who care. I want to tell you not to worry, but telling a worrier not to worry is like telling someone who is thirsty they can't drink. I'm an expert worrier so I get it. I would guess the reactions you had were all caused by anxiety. From my experience with anxiety meds, and I have been on and off plenty in my 50 years, I can say that they affect everyone differently, but they always made me sick for the first week of taking them. Clonozopan, which is prescribed for panic, was the least troublesome, but will make you tired. So, when you discuss staying on antanxiety meds with your doctor, you need to be aware that going on and off meds like Zoloft, Prozac, Valium etc will leave you feeling crappy. You need to get on it and get through the initial sick feeling as your body adjusts, then stay on it. If you decide to go off, you need to taper off of it or you will have withdrawal.

Mr. Kidney is correct, worry stems from feeling out of control, so the websites he gave you will give you power and knowledge and that will help calm the fear. There is nothing unusual or wrong with your reaction. I completely had a meltdown when I found out and I was at your stage. Keeping your job is the best thing you can do because it will make you feel normal and forget about yourself as you learn new things and meet new people. Sounds like you have some great bosses.

In the meantime, while learning more about CKD, there are some things you can do to help with your anxiety about this. Exercise, prayer ( if you believe in a higher being), meditation and yoga.

Here is an excellent free youtube hypnosis video which has helped me over and over when I get anxious about my condition.

youtu.be/UyYCL5oDtmo(Not working as expected?)

Here is a link to an amazing yoga instructor. This might be something you and your girlfiend can do together.

youtu.be/Enz98dDXQfY(Not working as expected?)

We are here for you.

Sending you healing thoughts and many blessings!

[ddwebangel]

Hi Spookjay. What everyone has said here is good advice. But watch what you read on the Internet. It can overwhelm you & may not apply to you. Everyone is different so talk to your doctor(s). If you don't have a nephrologist(kidney dr) I would get one. Try to get your anxiety under control & your BP. Hypertention is one cause of CKD. Watch your protein intake. I am anemic all the time but found by eating vitamin C gummies helps get more oxygen in your blood. You are not alone remember that. We all are with you. Stay strong girl.

[coaching]

Hi Spookay, you are in the right place here, feel free to unload. We are all here to hear you out and you have had excellent advice from members. You are probably researching too much on renal failure and this is turn is causing the anxiety and panic attacks and you are becoming symptomatic. Please try and relax and focus on what is important to you.

Hope that helps and all the best.

[Rosemary201]

Ha ha. Thank you 😍