Just diagnosed with stage four kidney disease: Need encouragement

Posted by rene123 @rene123, Aug 17 2:10am

I was recently diagnosed with stage four kidney disease. I’m only 62 and was never told my previous EGFR numbers were a problem. Ive always been active, I ran track, played volleyball, gymnastics, dance, but I’ve slowed down because I’m always so tired. I was only told I have CKD. Okay I guess I don’t need to worry! But now I’m seeing I’m one stage away from dialysis or a transplant. What the ?! I’m very upset with the lack of communication. Well now I have to deal with this. I have a daughter, do I tell her? I need to change my diet, but my Nephrologist only gave me a sheet of paper with fruits and veggies with too much potassium. I’m pissed. If you’re in the same boat please reply, I really need some encouragement.

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Profile picture for 1830 @1830

I am exactly in the same boat. A couple months ago the lab I go to starting sending test results to me as well as the doctor. That was when I first saw my EGFR and I went into panic mode. Scared the heck out of me. When I went to the doctor, most of the time I would see a nurse practitioner every three months and the doctor every six months. When I would go to my appointments we'd go over the lab results and the doctor and nurse practitioner would go over creatinine, potassium, phosphorus, etc. All the things that contribute to the EGFR count but never talked about or even saw my EGFR. Everything was excellent and within normal range. My last stage was 3 so I thought I was still at 3. In actuality, I am well into stage 4 and very close to needing a transplant or go on dialysis. I may be remiss in not specifically asking about it but when everything was was in the normal range I didn't think to ask. The only time there was a serious problem was after I had COVID, my blood test apparently went haywire and my doctor said it indicated that I have Leukemia. I had another blood test two weeks later and it hadn't changed. He sent me to an oncologist, two lab tests later everything went back to normal. The doctor did not agree with me but I thought the blood tests got screwed up because of COVID. At any rate I wonder that when the doctor said it all went back to normal he meant that it no longer pointed to Leukemia but that my stage changed from 3 to 4 at that time. At this point, it would be guessing and nothing concrete. I also had to change doctors at that time and with the new practice I saw a different nurse practitioner at just about every appointment. I'm sorry, I did not mean to tell you my life story but what I have learned from all this is that I cannot trust the doctors or nurses to keep me informed of every step of my disease. That I need to stay on top of all my lab results and learn to ask questions. In conclusion, the thing that makes me angry is the lack of information when I first learned I had CKD. The way I found out I had CKD was my doctor's office clerk calling me to tell me I needed to make an appointment with a Nephrologist. In my ignorance I had no idea what type of doctor a that was. I asked the clerk why I was being sent to a Nephrologist and her response was, I don't know. I asked to speak to my doctor and was told she was not in the office. I looked up Nephrologist on the web and read the good news. Anything I have learned about CKD was on the web. The first Nephrologist I saw gave me a general idea of what it was, what to expect. And a hand out on what foods to eat and what to avoid. That was it. I read as much information as I could on the web. From my research I found that I had a lot of questions that I should have written down for when I had an appointment, instead I thought I would remember to ask the doctor. What actually happened is that my mind went blank trying to understand what she was telling me at the time. I have had about 5 different doctors both male and female. There was no discernible difference from one office to another. The doctors always seemed in a hurry if I started asking questions they had one hand on the door ready to exit. Not every doctor behaved like that but most did. As Hippocrates said, "if you are not your own doctor, you are a fool". I don't think I would go that far but I think that we need to depend on ourselves for the things we need to know. Some through research and going to classes that most towns/cities have for learning about CKD.

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Always get a friend who is good at asking questions to go with you. I realize not always feasible but try I had a NP who I suspect did not know what GFRs meant —lazy.
. You are getting a run-around that is unacceptable
I just reached stage. 4. No family or dependents. Am declining dialysis and too old for a transplant-if I had wanted one. Remember 64 ounces of water a day. Hydrogen peroxide in small amounts will just add a little more oxygen to your water

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Profile picture for maggieinfp @maggieinfp

Not sure what your eGFR is but has to be under 20 to get on transplant list. As a recipient my advice is:
Drink tons of water, low potassium, low phosphate (nothing from a deli) and no OTC meds of any kind.
No brown drinks (coke, Pepsi etc). These all helped me go from eGFR of 8 to 15 before I got my transplant. Good Luck.

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I’m at 26 and stable for now. But I’m very frustrated with my doctors. They’re making it sound like it’s nothing serious. I guess they have so many hundreds of patients with stage four I’m not much of a concern. Not until I’m below 15. But they’re not giving me much advise. Except to watch sodium, potassium, protein, you know the drill.

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Profile picture for njwrstlr @njwrstlr

Hi,
I have stage 3 kidney disease and I used to cringe before every visit to my kidney specialist. Dr Soni used to give me such news as your kidney functions are low and you need to drink water a lot and eat veggies veggies veggies and dont have more protein than 3 or 4 ounces at any time. Pottassium and phosphorus are no nos and he gave me a list of fruits and meats not to eat. I went to see a nutritionist for this and she gave me further instructions on what not to eat and what I can eat safely so as not to make my kidney disease any worse than it is. I am deathly afraid of dialysis I just do not want to get to that point and Im at stage 3. You being stage 4 are too close for comfort to the dialysis threat for me so I would see a nutritionist right away and definitely do what dr Soni says and only eat good things for your kidneys like water and certain veggies and berries etc.. and not hardly any protein from animals . please take this advice to heart as I dont want to see anyone have to do dialysis it wrecks everything .

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Thank you, I’m so sorry you’re having to go through it too. Your doctors are giving you so much more info than mine. All I was told was avoid salt, potassium, and protein. I was told not to drink too much water. They’re acting like stage four is no big deal. I don’t know what to think. My HR Dept told me to fill out FMLA paperwork so my absences would be covered. The doctor gave me three hours every two months to cover appts. They said they never fill out FMLA for stage four. What if I have a day I feel like crap and need to stay home and rest? I’m 62 working full time at a very stressful job. Those will be considered unexcused to my employer. I could lose my job. I’ve already been given warnings. This whole thing sucks😔

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After I had a Reclast injection for bone health, I went into Stage 3b Chronic Kidney Disease. I've been on a limited diet for a year and that has helped stabilize my CHD at a 3 level. My diet has been narrower than gwld76. I have had no meat, but small portions of fish at least twice a week(one fish cut into two pieces) and homemade chicken soup. Every day I microwave a bowl of frozen organic blueberries, and most nights I have stir fry vegetables over a range of carbohydrates, and following the Cleveland Clinic guidance to have red bell papers I stir fry these as well. Recently added red lentil soup which makes me feel full. I have quarterly blood tests so I use the results to make adjustments to my diet. Hope you will find a diet that works well for you.

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