Stage 5 CKD with no warning

[WTFHappened]

I'm in stage 5 CKD & new here. A month ago I did not know I had Kidney disease at all! Doctors do not know why it hit me so fast. Both my kids, plus a family friend, have offered to be living donors. I was in hospital for week, now home. I feel awful. They've adjusted my BP MEDS, but no other treatment. What more can be done to help me feel better so I don't lose my job?

[tas1kubra]

Hello WTFHappened

I am so sorry that you are going through this. Believe me, many of us (even though we skip minor details about our bodies) had no idea that we had kidney disease. To me, the worst part is the shock and digesting the news.

First things first, it is great that you have a living donor. In worst case you have a very strong ground to rely on, so please do not put your body additional stress. Your body is already trying to manage this disease, which is believe me is very hard once you find out the importance of a kidney to a body.

As second, is it possible that this is an acute situation, rather than chronic disease? I am no expert, but I believe the approach changes accordingly. Have you visited a doctor before? Have you had any symptoms? What was your reason of your visit to hospital?

I assume it is risky to do a biopsy on the kidneys if your levels are too low. But please elaborate your situation a bit more. What is your Creatinine level? eGFR? Have you given 24-hour urine test? Do you have protein leakage in your urine? What is your blood pressure? Or do you have diabetes?

Various things effect our kidney throughout time. It is expected to kidneys lose capacity in their functioning with age. But Stage 5 is named as ESRD, as I am sure you have already known, but this level is decided according to your eGFR values. So please share more about your situation.

By the way, there is no treatment for this disease. They only try to treat side effects that comes with this disease. So that's quite normal. As I said, give yourself time to adjust this news, you have at least transplantation option. And believe me many people suffer from this disease.

[honeybug in reply to tas1kubra]

Brilliant reply tas1kubra.

I only found out about my stage 3a CKD in January 2022. I asked for my December 2021 lab results delayed doing lab work due to pandemic. Autoimmune disease destroyed thyroid and caused insulin severe diabetes stage 3a CKD nonalcoholic fatty liver disease/NAFLD and abnormal blood cells resulting in anemia.

In office visits have resumed here across the pond with mask wearing protocols.

You’ve taught me several things in your reply.

Thank you for sharing.

I pray that you will be as healthy as can be for all your life.

Love and prayers.

EJ 🤗♥️🥰🙏🕊🌿🌸🦋

[tas1kubra in reply to honeybug]

Thank you for your kindest words honeybug It's really nice of you! I am so happy to share because when I got my diagnosis, my doctors told me that it's too late for me now for a treatment I was in a mood that I was getting a transplant in 3 years

Well, actually now doctors are telling me that they do not expect me to survive 5 years. But I am motivated to prove them otherwise.

All thanks to brilliant people here. If it were not for these people, I would probably wait to have a transplant at my house every day.

I had no idea that I could be active until the end-stage. When I see many people here talking about how they traveled and kept doing sports inspired me. It inspired me so much, and I could find the strength to move to Denmark!

So I want to reciprocate everything I get from this platform. Thanks to people here, I don't see the transplantation procedure as an end of my life! Now, this disease is my friend, and I will live with it until the end of my life. But in the hospital, they create a mood, such that you are a half-person anymore.

I hate it. This disease doesn't mean the end of your life. It means taking care of your body more than before.

[honeybug in reply to tas1kubra]

OMGOODNESS tas sweetie 🤗♥️🥰🙏🕊

🌿🌹🌿🌹🌿🌹🌿🌹🌿

I’m sooooooooo very sorry for the doom and gloom given you in hospital. 🤝🤗🥰

If you check my bio ( add 2 new diagnoses to the list now).

I am all about quality of life as opposed to quantity of life.

My comorbidities do NOT define who I am but help to shape me into how I deal with them.

My mission on Earth 🌍🕊🌍🕊 is to help others I can by sharing/guiding/comforting/encouraging others my whole life however long it may be.

My Grama Seaton called me Honeybug. She passed in 1994 bless her soul; she inspired me so I hope to to inspire others so I make the sweetest lemonade from my sour lemons life has dealt me.

🍋🥤🍋🥤🍋🥤🍋🥤🍋

You GO GIRL and prove that negative prognosis wrong!!!!

🌿🌺🌿🌺🌿🌺🌿🌺🌿

Have you already moved to Denmark? If so way to goooooo you!!!!

🌺🌿🌺🌿🌺🌿🌺🌿🌺

You live your best life to the fullest. Pace yourself and do all possible things to improve your health but enjoy every moment you are blessed with 😍.

🌈💦🌈💦🌈💦🌈💦🌈

Just in case you haven’t get a second opinion and repeat tests to confirm diagnosis. I know this sounds crazy but errors due occur in medicine for sure. Just read an article about people with college degrees making huge mistakes for whatever reason ( mixing up labels. Cross contamination. losing paperwork and saying eany meany mighty moe and the results weren’t actually theirs …didn’t detail privacy issues). Go private if possible after all you’re worth the expense….if you can afford it.

💦🌈💦🌈💦🌈💦🌈💦

YES a shout out to all you lovely people/staff included. Group 🤗s via pandemic safe technology. ♥️ thanks for your support and sharing life experiences.

🤝😍🤝😍🤝😍🤝😍🤝

You can PM me anytime. I’ve been a shut in/housebound since 2014 except for dr/hospital stays.

I have painsomnia so my sleep 😴 is reduced to catnaps whenever I can.

How soon I will answer will depend on health..,eyesight failing and typing difficulties due to needing reconstruction surgery on thumb/wrist/forearm and no longer surgery candidate.

It’s been great chatting with you sweetie. ♥️

Best wishes for everything great coming your way AND to be as pain free as possible hun.

Love and prayers.

EJ 🤗♥️🤗🙏🕊🌿🌸🦋

[tas1kubra in reply to honeybug]

Honeybug, you are so lovely and full of hope. I admire you!

I am really -now- not obsessed with the disease. Finally, I am getting out of pitying myself, to focusing on what's in front of me. I know that I will spend a longer part of my life at hospitals, but I know that will not cover my whole life.

All I am focusing on is that my disease does not seem to be genetic. I have no relative who had kidney disease at my age. That means I can get my father's kidney, or if not I have a best friend who says she can give her heart if she had to

So... Lots of emotions But happiness after all. At the times like this, you appreciate what you have, and who you are with. I am so grateful to god, or the universe that I had my husband before I found out about my disease. He has ulcerative colitis in remission, but he had to fight an auto-immune disease in his life. So he really understands and supports me. Believe me, sometimes I really think everything is about timing. I found out about my disease 9 months later in my marriage. I really don't know how I would react to this disease if I had not had his support with me.

Also yes, I moved to Copenhagen. I come from Turkey, which has really high inflation rate and living standards are on a declining trend. My whole life, we suffered financially as my family. And I was so dedicated to earning enough to have a decent life, I spend my 8 years in very toxic work environments. I did not go to hospitals when I was sick. I never -not even 3 weeks in a total of 8 years- took a vacation. I did my master's with my annual leave days. But in the end, I got a job offer from Copenhagen. That was the time I got my diagnosis And until the very last day, I was so hesitant to come. I had to come alone, my husband did not get his visa yet. I have no friends in Copenhagen. And among all these, I have my disease. So psychologically it was challenging, very challenging for me.

But then I decided to come on my last day in Turkey. I wanted to start a new life, with less stress and more life-work balance. God knows I spend great 3 weeks here so far. I was really lucky, I could immediately find a house, I got registered to the municipality, and visited my general practitioner. He gave me a referral for a nephrologist, now I am waiting to see my nephrologist. And I cant even explain what a relief it was, to stay away from all anxious relatives about my disease. Everyone in my hometown is looking in my eyes if I will faint in the next minute I understand them, too, but sometimes it is really overwhelming for me.

To sum up... I dont know about the prognosis, but I am determined to enjoy my life. So I have my bucket list before the transplant. And I will get to the bottom of it. I am gonna enjoy my life, as much as I can, no matter what kind of health problem I have.

From the bottom of my heart, thank you. Thank you for every word of you. You are an inspiration.

[honeybug in reply to tas1kubra]

Ohhhh my precious friend tas 🥰Thank you soooooo much for your loving kindness.

I’m soooooo happy that you are now able to live your best life whatever comes your way.

I so admire your brave move to Copenhagen alone.

I lived in Schweinfurt Germany for 18 months mostly alone while my husband served in the Army.

I have every confidence in you to make your life a great one.

Just be sure to take care of yourself first so you can care for your hubby too.

I’m so happy for you that you have the option for transplant.

You are never alone…you have me. I love and care about you.

Your new home sounds wonderful.

I fully understand how anxious you are about your family/ townspeople watching your every move.

My dad is 93. He and my brother both have kidney disease. My brother is in multiple organ failure at 64 and I just found out in January this year I have CKD myself stage 3a.

I’m being treated with a dangerous cocktail of meds to cure my H Pylori and a serious infection from 50+years of high dose aspirin for my heart disease. So I know my CKD will worsen from it.

I’m determined to make the best of the rest of my life.

You sound so much like me. I never took vacations or sick leave. I worked instead of being in hospital when I should have.

Thank you so much for your sweet words.

Remember I’m here when you need me sweet tas.

Love you hun.

EvaJo aka EJ

🤗♥️🥰🙏🕊🌿🌸🦋🤝

[Porter20 in reply to tas1kubra]

The exact same thing happened to me in August of 2020 you are not alone. I had virus probably Covid no testing in March of 2020 and had the long hauler version. Kept dragging on until I got my blood checked. They called me at work. I was still dragging in daily. Told me to go to the emergency room. I had anemia & something with my kidneys.They tested me 5 days ended with issues for chronic kidney but started with acute disease. They think I had something mild wrong going on a long time then Covid hit me wiped out my kidneys totally. I did diaylsis 16 months then received a living transplant 6 months ago. I felt great on diaylsis and feel great now. Blessed to get a second chance at life.

Praying for you. 🙏🏻

[RoxanneKidney in reply to Porter20]

Or you had it and didn't know it until the Covid. They don't call it the silent killer for nothing.

[Porter20 in reply to RoxanneKidney]

No they confirmed by looking at my heart I had a virus. They can look 6 months back.

[Starcatty in reply to Porter20]

Yes they underestimate how much covid affects the kidneys. It got so bad at some hospitals that they had to put in dialysis machines next to the covid department. People with healthy kidneys had to go on dialysis.

[Bassetmommer NKF Ambassador]

HI WTFHappened. We do not have all your information, but your doctor does. This is the time to establish a better working situation with them by demanding some answers. I am sure they will refer you to a nephrologist. Write down all your questions, big and small and then make sure they answer them. Take someone with you so they can repeat the answers and support you when you get overwhelmed. There are many things that can cause kidney disease and there is also hope. Not knowing your whole story, we are can't really tell you what to expect. Sorry you are feeling so bad. Make sure the doctor knows ALL your symptoms, goes over your medications, one by one, and gives you a referral to a dietician.

The other thing is to file right now for FMLA. It will protect you and your job no matter what happens. dol.gov/general/topic/benef...

Let us know what happens. We are here for you.

[orangecity41 NKF Ambassador]

Here is a link to article from National Kidney Foundation that expalins the eGFR and different causes of Chronic Kidney Disease. Davita also offers classes in kidney disease that might be of help to you. kidney.org/atoz/content/gfr

[whats]

I was told a couple of years ago, out of the blue, that my eGFR was 23. I never even heard of eGFR before. So I went vegan and lost weight and drank more water and took more bp medicines (prescribed by nephologist), and readings since have mostly gone up. Last test showed it in the 50s, so there are things you can do. Like they said, it could be something acute. I still don't know what caused that first low reading. Its a mystery.

[lowraind in reply to whats]

I was going to suggest the same thing--follow advice from so many resources available online--one of them--"Making Sense of CKD A Concise Guide for Managing ChronicKidney Disease in the Primary Care Setting". I usually go to information from May Clinic, John Hopkins and Cleveland Clinic.

Start with Hydration, cutting salt way back, and limiting consumption of meat. Do this before next blood draw.

[medway-lady]

Same thing happened to me. From 89 to 8 GFR it was picked up by a routine blood test. I spent weeks in hospital and nothing was wrong with my kidneys , no disease, no cancer, no stones no PCD just they stopped working. It was put down to a medical injury caused by a common medication and over time (past 3 years my GFR is now 32 and life is reasonably normal. I could not walk up Snowden again nor even ramble a few miles but at a steady rate can walk about 3 miles. It is hard and I had no medication except high dose steriods which really made no difference but were worth a go. My son offered a kidney but I said no as he is very sporty and climbs mountains for a hobby, I'm in the UK and I don't know where you are but wish you well. I had a huge, huge amount of tests and was not diabetic, had no history of any indication that this could happen so it was an almighty shock. I can't go into details about the medication as its going to court. But it is swallowed everyday by millions without a second thought and the blood test was for something very different and I'm very lucky to be alive. I've never been overweight, had no symptoms at all no blood in urine etc etc and now just enjoy every day. Whatever you do don't buy any so called remedies but be guided by your Renal Team.

PS I had a biopsy, CT scans, MRI and 24 hour urine measurements. Loads tests that looked at gene's as I have Rhumtoid so was it linked ? . As my Nephrologist said "once the likely is eliminated we look for the unusual or rare, you've gone into I've no idea" but then came a bit of information that they did look at.

[hardrock430 in reply to medway-lady]

Praying for you

[19Willow62 in reply to medway-lady]

Hii Medway lady, I'm also in the UK and also had pretty much the same thing happen to me 4 years ago, annual blood test because I have a Urostomy insitue for the past 19/20 years showed an EGFR of 12 and was rushed into hospital. Test after test all the same as yours, some repeated twice all came up negative. First diagnosis was Just AKI acute kidney injury. Was hooked up to fluids for 10 consecutive days and got my EGFR up to 23.Not as high as they wanted it before discharging me but I was going stir crazy and my little cat was frantic with separation anxiety, yes cats get that too, anyway just before going home I happened to mention that I take anti-inflammatory for my arthritis and bingo, mystery solved. They have permanently recked my kidneys and I am now stage 4/5 depending on what day they draw blood and urine. I am for complex reasons not a transplant candidate and again for other complex reasons not suitable for dyalisis so just plodding on doing what I can to delay the inevitable. I started on strong prescription strength medication for my arthritis and then just the over the counter ibuprofen with no knowledge of just how dangerous this drug can be and the warning leaflet only warns of tummy problems. I have written on here before to try and warn others to avoid this drug at all cost. It has taken my health and will inevitably, in time, take my life. I know this sounds extreme but nephrologists could find no other cause for my decline.3 times in the last 18 months the doctors have said I had only weeks to live but I refuse to get on their timetable and plan to move house very soon and get on with living while I'm dying. So there expert's.

Love and light, Willow.

[medway-lady in reply to 19Willow62]

Hi willow, yes life sometimes throws the cured ball and we catch and throw back or give in and give up. I like you am not giving up and intend to grow old disgracefully enjoying good food, wine and sometimes gin. I can't change what happened but can stay positive and am grateful for every day. We need to live and it's a lesson in never knowing what tomorrow may bring. Stay well and I hope its sunny where you are as cloudy here. xx

[RoxanneKidney]

Omg so sorry this happened. If I were you I would switch to a renal plant based diet.

[Jayhawker]

Have you talked with HR at your place of employment? You may be covered under the Family Medical Care Leave Act or other federal laws. If so your medical care professionals will have wine paperwork to complete but this will safe harbor your job as you undergo medical treatment to get you back up and running.

Jayhawker

[Sophiebun11]

Hi,

I love your handle.

Your meds could be causing the problem. Have you seen a Nephrologist? sometimes adjusting medications can make a big difference.

Best wishes.