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Joined: Apr 16, 2013

Chronic kidney disease stage 4 Stage dropped 50% in 3 yrs. My eGFR has gone from 66 all the way to 30 and 29 the passed years.

Posted by @beatckd4fight, Apr 16, 2013

I was diagnosed with acute renal failure after a bout of severe stomach flu over a holiday weekend- Memorial Day ,and was experiencing the usual vomiting, etc etc that goes with the flu bug. I was still able to get around and was sitting out on the deck in the sunshine supervising my FINE hubby who had enlisted his help to assist me in getting my flower containers planted. Although I was not a lot of help, I could instruct what flowers, etc. went where.

The unusual symptom I developed during the end of the second day of the flu bout, was the dull pain that started in my upper back rib area ?? It was a very dull aching pain adding to all the discomfort of the “flu” and the pain was intensifying. About every hour I had to stop “supervising” the flower container project and had to run back in the house to the bathroom with my mouth watering and stomach pumping and absolutely running on EMPTY, I would continue to have very harsh dry heaving-and such violent dry heaving is the only way/words to describe the experience- I literally mean it was horrible and my sweet husband started following me into the bathroom since my body was begining to get weak especially going now 3 days in this state and the flu not indicating it was goin to give up anytime soon, he suggested we get to the ER and not wait to go into the doctor’s office the next morning. Myself I was beginning to approach that heightened state of feelinf something was not right and I was degressing instead of progressing. At that 3rd day, I was beginning to not have the ability to stand very long without the back rib area approaching the unbearable stage of pain. I was trying diligently to get my flowers and herbs into containers before I lost them.

By the end of the day Memorial Monday, I was beginning to have to lay down flat to get any relief from dull aching back rib pain, along with very time I got “vertical” I was instantly nauseated and bringing on those wrenching dry heaves.

The next morning , Tuesday, everybody is back to work full bore. My daughter stopped back over to check on me , and with her being a nurse, she took one look at my physical appearance, and I had been vomiting and diarrhea, etc since Friday night on the holiday weekend- with the last two days nothing staying down and suppositories were not practical, along with any oral meds –I had to take regularly -it was time and we were off to the ER!

I was feeling very weak by Tuesday and still had that dull aching pain in my upper back rib area – that I was assuming at this point in time with this flu bug that I had dry heaved so much it was just the pain from all the wrenching heaves.

The ER assessed me and sent me down to cat scan x ray first test and they also pulled blood, started an I.V. I was feeling pretty crummy to say the least and although I do not want to go to the ER anymore than the next person does unless it is absolutely imperative and feel its the last resort-it was definitely that time-I was SO ill and usually any flu virus has run its course by then- knowing viruses have to run their course-I was just waiting for it to be over, but something wasn’t right by the 3rd day and I was still not shaking it off.

Getting to the chase-always hours anytime you enter an ER, we had been there awhile and the internist had decided to admit me since I had not been keeping anything down and also was loosing out the other end-he advised I should get some I.V. fluids in my system before I would go back home. So waiting and waiting finally was sent to a room after many hrs. My stomach and upper back ribs still aching, even tho they had given me nausea meds thru the I.V., I still had dry heaves and discomfort. After 9 or so hours I finally had a hospitalist Dr enter the room- it was about 3a.m. And my hubby was lyin on the recliner in the room.

She began to just start talking loudly and I was so weak – hubby was startled and stood to his feet, and she said “you’re kidneys are in failure”! I was in shock, I had no idea, and my hubby was equally astonished! I had NEVER had a kidney issue in my life- she-the hospitalist physician, went on to say “your kidneys are all dried up and your electrolytes are and we will have to wait until we get you hydrated from this virus before we do any more testing, like the cat scan to check your stomach, abdomen, since we cannot run contrast dye through kidneys that are in failure” My kidney creatinine was 4.4 and potassium 1.8- I was extremely dehydrated in just that amount of time with a virus.

The GORILLA in the room at that hour was what she said! My husband
Was so upset and he is a peaceful quiet demeanor- he responds to the hospitalist by stating and asking- “what do you mean, we can’t do a cat scan because she is in kidney failure?!- they already did that test when we first brought her in and put an I.V. In also before they took her and then drew blood?”

She said oh no, can’t do her kidneys are all dried up, did you not know? How did we know or could we know,?? – Hospitalist, she didn’t say much more, except that I would stay in hospital until my potassium/electrolytes returned to normal and that with the I.V.’s and nausea med I should be back to normal in a few days and they would keep checking the blood labs. My hubby asked why weren’t we advised about this sooner- she responded with it takes time to get test results back. Since all this – and my kidneys remained damaged, my PCP referred me to a nephrologist for follow up after the hospital stay, in which that Neph Dr said give it a bit more time since you haven’t had any kidney issues before-don’t be concerned. That was about 10 months after the incident and my eGFR was just 66 then. Normal is 120. My PCP draws blood every 6 months due to a childhood history of low potassium- normal for me has been 2.8-3.1 and I have lived over 60 yrs with no problems with the blood potassium unless it drops under 2.5-which is why my PCP keeps monitor on it. I take a supplement and have had to at different times way back when I was a teen, and younger at 6 yrs old having tonsils out. Point is the potassium has been a childhood deficiency and I have managed a normal life, have children and been in good health.

Well, my kidney function did not return to normal after the catscan dye testing when I was in acute KF from dehydration due to a virus. My PCP wanted a second opinion since my kidneys were decreasing instead of returning to normal-and that is when we were told I had Chronic Kidney Disease Stage 3-(this was 3 yrs ago January2010.). Diagnosis was contrast dye administered during hospital stay for flu virus when kidneys where in acute failure resulting in chronic kidney disease stage 3-eGFR was averaging in 50’s. Very disheartening and I am not diabetic, ironic is that I had lost my Dad a few years earlier due to diabetic complications producing failing organs- and I was his caretaker the last 3 yrs of his life, in which he spent the last six months in end stage 5 kidney failure dialysis and passed with kidney failure. My mother had diabetes but passed from strokes, and I just took care of and watched my beloved big brother pass from diabetes complications having ESRD and dialysis for 4 yrs before he passed at just 60 yrs. My aunts, uncles, had diabetes, several I watched go through dialysis and none received a transplant, all passing of ESRD, my one uncle on dialysis for 7 yrs. I had vowed to keep myself healthy, never deliberately put my health at risk for diabetes, kept ideal weight, exercise and had a career that required physical health to serve in my occupation. Of which, I can no longer do. Talk about being dealt an unfair life card…..

I remain positive and have faith that keeps me grounded.

I want to ask if anyone has chronic kidney disease, how they feel, etc. I have done all I know to do to maintain my kidney function from the unfair card I was dealt.
Also, I don’t want to sound negative – I know accidents happen, we all have the human factor to deal with, I just couldn’t believe Or my lovely family that I got CKD in this fluke way…

Those who have CKD, do you have a renal dietician-I believe diet is important even with cancer patients it can make a huge difference in mortality with the chemo drugs, etc. My PCP is changing my nephrologist since I am losing function and its down to 29 which is entering stage 4 and we are trying to maintain stability-so PCP is monitoring and doing everything to get me the best care and goal is to stay off dialysis-keep function stable.

What symptoms does anyone have if you have CKD? Any nausea, fatigue, upper back rib area flank pain, sometimes taste is like a metal taste, trouble sleeping, itching skin- dry. Also 3 or 4 UTI’s are diagnosed last 2 yrs, and blood in urine.

I have renal cysts in both kidneys, which I have had history of cysts on scalp, ovaries, skin when young, and gallbladder was full of stones with ducts blocked there were so many. So I don’t think the renal cysts are a problem, they had grown from an ultrasound reading almost a cm in size in a years time.??

My last specialist had me come in once a year, saw me about 5 minutes, takes blood labs 3 to 4 times a year and calls with results and sends copy. Seems too busy for questions and no renal dietician working in coordination which can help. Only restriction on diet is salt and my blood pressure was low before the CKD at average of 98/60-110/65. Now it is steadily climbing – however still normal at 120/75. My family and I are concerned and nephrologist says nothing to be concerned about-? My numbers for function have dropped since been with him from an average of 60.9 to 29 in just 3 yrs- I AM concerned that maybe not everything is being done to maintain kidney function and my family is also, two of which work in the medical field.

Anyone with suggestions or what symptoms they have, what your Neph is doing to keep you stable and off dialysis if possible. Especially not being diabetic and I have been researching renal diet, etc the last 6 months with kidney function declining. I have basically changed to a more vegetarian diet with lentils, beans, seeds, nuts for protein. I hav decreased protein since I researched protein is harder for kidneys to filter when they are weak. I asked my Neph about the protein and he said no restrictions- just salt.- ? Current Neph is a specialist in dialysis, transplants- hypertension. Somehow I feel doing nothing can do more harm than when something is done with good intentions but goes wrong.

From the National Kidney Foundation and American Kidney Foundation and other kidney resources, I would benefit from a renal dietician at this stage of kidney disease, and the symptoms I have are from kidney failure-which current Neph states nausea, fatigue, and back flank pain is not kidney disease related-? How can all the kidney resources be indifferent?

I have concern as does my loved ones, I want to do all I can in my power with my doctor and support staff to stabilize this disease, so I can be with my family and feel well enough to function and do, go places with them- best quality I can have.

Not retirement age, lost my career, and would do anything to share quality time with my friends and family as long as I can- I’d rather go out of this life another way than from End Stage Renal Failure.

Not being diabetic like most of my beloved family was, now all passed, I would think I would have a good shot of stabilizing this kidney disease and possibly garner some info for a better diet that would stave off nausea, and the other symptoms.

Any resources or suggestions would be greatly appreciated. A listening heart is a lift to anyone’s spirit.


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