My first post here though have been monitoring the site since May and got some very useful info so thanks all.
I just wanted to ask if anyone has a similar experience to me can offer thier experience.
My Situation:
50 yo male suddenly felt Ill (tired, lost voice, no sleep, fatigue, confusion, back pain late April early May this year. A lot of back and forth with GP but eventually 11th May got to see the main GP at my surgery. He immediately called an ambulance.
Diagnosis in hospital - Sepsis, E coli, hypoactive delirium, Anaemia, AKI stage 3 eGFR 4/ml/min - Creatinine >1500. Vomiting blood
Was immediately given antibiotics and put on dialysis and stayed in hospital 3 weeks whilst slowly recovered. Upon discharge creatinine was 387 and eGFR 15. Nephrologist made a plan for me to get bloods every month and tele-appointment with him every 3 months. Had first call with him 1st July and he said everything ok and things improving. He seemed very rushed as if he had another engagement so didn't get to ask all my questions. Early days since discharge i had bad neuropathy, metallic mouth, high BP, pain in back, very tired all of which have improved now. Potassium, Sodium, phostphate levels all good.
My reading prior to AKI - creatinine 92 umol/L , eGFR 92 ml/min
My readings since:
7/6/21 - creat - 266 umol/L - eGFR 23 ml//min
25/6/21 - creat: 239 - eGFR: 26
7/7/21 - creat: 200 - eGFR: 33
10/8/21 - creat: 194 - eGFR: 34
27/8/21 - creat: 182 - eGFR: 36
I know medical questions should not be asked here but I was just wondering if anyone , with similar expereinces, has any thoughts on my recovery rate since AKI. I was kinda hoping kidney function would improve at a faster rate but maybe it doesn't happen like that. I got my next Nephrologist appointment Oct 1st so will check with him then. I suppose at least things are going in the right direction and not deteriorating.
Anyway thanks in advance
Daniel
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Danoco
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Hi Danoco,Wow, what a nightmare health journey you had from May to August. I have not had a similar situation and I don’t know of anyone who has, but I am happy to see that your kidneys are recovering from the AKI that you had in May. Are you still on dialysis? Are you on a renal diet? I wish you the best for a continuation of your recovery.
Thanks CKDnomore, yes it was a worrying time for me and my family. Doctor in hospital basically said if I'd left it another day, I would have not be here due to the sepsis and kidney failure. My dad is extremely angry with my GP for messing me around for 3 weeks and has made a formal complaint. It's so difficult to get a face-to-face doctors appointment these days. But, in the end, i'm just happy the GP saw my condition and immediately called ambulance. I stopped dialysis whilst in hospital once the eGFR got to 15 which seems to be their guidelines here.
I was wondering about the renal diet but the Nephrologist didn't seem concerned based on my bloods. I also spoke to a Renal Dietician who, after looking at my details, said there is no need for me to be on any special diet. I, however, have tried to watch what I eat..ie. reduction in salt (no bacon), no high potassium foods like bananas, oranges etc, cut out colas... things like this.
I guess if my bloods are showing things are normal, then I shouldn't worry about what I eat.. but I am skeptical of this advice.
Well, as long as levels are going in the right direction, I suppose I must be doing the right things. Thanks again
I had a similar experience as you but I was much younger. 1996 I had a GP make a mistake in treatment of heat stroke that caused ascites. That mistake cause multi-organ failure, septic whole that caused sepsis and put me on a ventilator in the ICU for 6 months. Total hospital stay was 8 months and recovery time about a year. My kidney readings were as follows.Creatinine 11.5
eGFR 3
My nephrologist who was a blessing from God, decided against dialysis as he was concerned if started it would be counterproductive and he though at my age kidneys might recover. So he checked function every 6 hours for entire hospital stay. They showed enough improvement that I never was put on dialysis and when released from hospital labs were still stage 5 but much better creatinine at 5.6 and eGFR at 11. The numbers continued to improve over the next 18 months and leveled out for me with creatinine in the 2.5-3.5 level and eGFR in the 14-28 level. So hopefully your levels continue to improve. Work with nephrologist closely and make your you eliminate intake of all things that hurt the kidneys, control those things you can control and that is all you can do. Good luck with your recovery and we are here for support!
Hi Black, thank you for your reply. You had a similar event to me though yours was much more serious. You must have took some recovery when discharged from hospital. Took me weeks to get back on my feet. If your eGFR has stabilised now at 28, how are you classified now, do they say you have CKD or long term AKI ?
I think he made a mistake by not putting you on dialysis during your stay. It would have supported the kidneys giving them a chance to heal futher. I was given a temporary central line and then a port
I had AKI stage 2 in Feb/Mar this year. Mine was due to blood pressure meds. I was prescribed Indapamide. 3 days later I woke up very confused, major headache, severe gut pain and struggling to keep water down. I stopped taking the Indapamide immediately.
I went to A&E by ambulance, where they did various blood tests, which they then ignored, and sent me home with a diagnosis of tension headache and instruction to call my GP in 3 days to make an appointment, oh, and your sodium is a little low. My sodium was 123 mmol/L (Range 133-146), and electrolytes all out of whack. My eGFR at this point was 69 which was down from 82, 3 months earlier. I have read that eGFR is not a good marker for AKI, but I haven't seen an explanation for this, and unless you are somewhere with a renal unit on site, you probably can't get the correct testing anyway.
8 days after my trip to A&E my GP sent me for a blood test and eGFR was 29. He called me late afternoon the day after the blood draw, (so it would have been lower still), and told me to stop all bp meds (which I'd already taken that morning), and to re-test on Monday morning.
The GP called me on Monday evening to say the results were not back, but that if I may get a call from the 'out of hours team' telling me I needed to go to hospital. That was a super evening.
Aside from the initial bounce back, it has been a slow steady increase, which I sincerely hope will be the same for you. I did not change my diet because I didn't want to get 'false' results, and for now it looks like I don't need to.
I had a coeliac diagnosis a couple of months before the AKI, so low nutrients and prescribed a couple of months of Iron tablets etc, which meant I was being monitored. There is no doubt that the AKI had a negative impact on my red blood indices, and it took a couple of months to become apparent, which makes sense when considering the life of a red blood cell is about 110 days.
Results at coeliac diagnosis in Nov 2020, bearing in mind I'd probably been coeliac for years
So, I'm back on the Iron tablets, and they're now coming up slowly. I don't think I would have been tested for Iron after the AKI if I hadn't been coeliac and asked for it. I asked my GP if it might be that I'd stopped producing erythropoietin during AKI, and his response was "EPO is synthetic" he did admit his mistake, but testing wasn't available to him.
There is a lot of information/advice out there re treatment for AKI after surgery, but there doesn't seem to be anything about AKI for other reasons.
I haven't had a face to face appointment with a GP for any of this. I wish you the very best of luck in your recovery,
Hi Nellie, thanks for your reply, very interesting, just goes to show have to be very careful what pills to take. I had to stop Acamprosate (alcohol anti-craving pills) and Disulfirum (to prevent a person drinking alcohol) as both were bad for a damaged kidney. I will have to stay sober without them. Any other new meds would have to check with nephrologist. Good luck with your recovery
Wow, that's some journey and some near miss. Here's hoping/praying that things keep on the rise - I'm CKD so am not familiar with AKI but gather it is something that can get better whereas with CKD that's not so.
I've not understood the need to cut things like potassium if your kidneys are managing it. I was chatting to the chief renal dietician at KidneyRD.com on this and she said potassium wasn't kidney toxic / kidney loading (unlike say, salt) and that there was no need to restrict it if the numbers were in range. Something to check with that renal dietician
Are all your other numbers okay: urea, albumin, cholesterol... How's BP? You any proteinuria?
You get any advice about going easy on red meat or limiting the amount of meat you eat?
Reading around here generally you will find that people have had very mixed experiences with the medics (GP's, nephrologists, renal dieticians). Indeed, you've had your own mixed experience. You will regularily see folk saying that you have to be your own advocate. Which means, yes being under medical guidance, but not following blindly. You have to educate and dig around yourself and educate yourself regarding your condition. If you doc is dropping a ball, you need to know about it.
(For instance: the constant refrain from folk here about drinking plenty of water (at my stage of the disease) was being ignored by me (I'd not drink a drop other than what appeared in coffee and beer and my food). Neither my nephrologist of 7 odd years nor my GP mentioned water. I get a renal dietician finally and the first thing she says is to hydrate: 1.5 litres a day. I'm up a kg (solid 64kg to 65kg) after a week of hydrating. Folk here are a great source of info and pointers)
Hi Skeptix, Thanks for the reply. All my blood readings, and they check everything, are okay and within range (apart from creatinine and egfr of course). Doctors and RD have not said I need any restrictions in diet but I am being careful anyway. I drink a lot, lot of water, always have since I stopped alcohol (had major addiction problem before). Your right about this site being a great info source, so thanks all and I have learnt to take full responsibility for my condition !
Dealing with the unknown is so challenging. Sadly making an accurate prognosis is difficult after an AKI. I had gotten down to an eGFR of 7 and was hospitalized. They didn't do dialysis because once I got fluids my kidneys started working again. That was July 2020. A year later I've crept up to an eGFR of 21. So, compared to me you are doing well. How are your labs for phosphorus, potassium, PTH hormone and anemia? I've got my phosphorus down to normal by taking a phosphorus binder so I don't need to watch that in my diet. I also ignore potassium and salt because I have dehydration problems and my labs are good. I take iron for my anemia and a special vitamin D for my PTH levels. eGFR is just one test you need to have.
Hi Barbara, thanks for the reply. Great information. I guess its a slow recovery process. I do take vit D tablets as that was low but other blood results were all okay. BP was High after leaving hospital and was going to start amlodipine but its dropped to normal so didn't start. Thanks again xx
Danica yep it was a journey! Even after I hit out of the hospital the ascites returned so I was carrying 50 lbs of fluid on a 150 lbs frame. Took another 3/4 months for all the fluid to be naturally excreted. Needless to say 1996 was a bad year but a blessed year as I was extremely lucky/blessed (based on your beliefs. I know I was blessed). Apparently I had some kidney function issues before the event resulting in a classification of CKD 2 due to high blood pressure or originally diagnosed at 18 prior to entering West Point. Apparently I had a blood pressure issue all through my late teens and twenties West Point and the Army saw fit not to tell me about because I was otherwise extremely healthy.
So both an AKI and CKD. As I have posted many times for me the key is to keep BP under 110/70 and weight less than 200. I am 5’11” so even under 200 keeps me in the “overweight” classification but I’m a former college football player so docs allow for the bigger frame. So there you go. Good thread by the way and continued blessings on recovery!
BTW former alcoholic here as well. I sad my BP and weight were my key but the first was stopping the alcohol! 20 years sober this year! So if you have stopped don’t ever, ever start again! If you have stopped God bless you it is not an easy thing to you and congratulations!
I was about to ask about alcohol when you mentioned ascites. Am also recovering alcoholic, one year dry. As I mentioned to another poster on the thread, I had to stop Acamprosate (alcohol anti-craving pills) and Disulfirum (to prevent a person drinking alcohol) as both were bad for a damaged kidney. I will have to stay sober without them. Given my recent kidney issues, there's no way I'm going to pick up again, especially now I got my liver blood results to normal range !
Congratulations on the 1 year! Keep it up cause you must persevere what renal function you have left. It was hard for me even 5/6 years into it in some social situations. So I understand. Plenty of help out there as you know. Support here as well. Continued good thoughts for recovery!
I had AKI, emergency admission, very ill after symptoms not recognised for 8 months. eGFR 20. This improved to 30 on steroids over 3 months. About a year hovering between 30 and 40. Two years later, e GFR 50 so I'm happy. Hoping this can be maintained. I am 67. So I don't think your recovery is that slow personally. Good luck.
I meant to explain that I now have CKD since my AKI. My Consultant told me at the start I don't need to follow a special diet and had a smile when I explained I had been following a strict renal diet, so terrified was I at the beginning. I was so scared, I was convinced I was going to die. I calmed down, but it took me a long time to accept I had this for life. Happily, nearly two years on I don't think about it a lot and I'm no longer afraid.
Hi Angelika, it is very frightening at first for sure, but your right, you have to accept it. I have another condition, hiv, which I believe I caught in a hospital after a road accident in Thailand (l lived in Asia for 20 years ). That was 10 years ago and at first thought my life was over and became depressed and alcoholic, but then you learn to life with it and now with 2 pills a day, the virus is undetectable and can live a full life.Interesting you say you now have CKD yet your eGFR is stable.
Here we have a shortage of blood test tubes and non-urgent bloods cancelled so don't know when next blood test will be.
I had similar thing happen. Was on dialysis for a month but function improved creatine to 1.09 and currently .89 so all good . No restrictions but I avoid processed food. The nephologist saidxthat the tubules in kidney get destroyed in this scenario but they bounce back and heal.
Hi Helloyall, I know this post is old, but I was wondering about the tubules if they can heal after tubular injury not being recognized for years. Mine was not found until years, so I am not expecting any improvement. Was your injury found early and treated successfully?
Hi Sarah, My kidneys were affected by an AKI caused by Sepsis/E Coli in May last year and kidney function was reduced to 3%. It has since improved to 35% and my Nephrologist says that's probably the maximum level it will go now due to the initial damage caused by the AKI. I'm not 100% sure my damage was tubular (I will ask doc next time) but ATN is the leading cause of AKI.
Thank you Danoco, I really appreciate it Since I just started treatment, I guess I’ll give it a year to see what happens. I’m sorry that happened to you. It seems like the kidneys are not very resilient. My biopsy showed mild injury so I was hopeful until I read mild injuries can still cause low eGFRs/ low function. Anyways thank you for sharing!
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