I just had the dreaded letter with my latest blood results.my gfr has gone down to 15,it was 16 in December.creatinine at that time was 279 and now 305.creeping up.iv had my bicarbonate level tested after many years .it's 20 mmol,it is suggested I may start oral sodium bicarbonate.has anyone had this ?if so at what stage were you put on this drug?.does it slow the decline? My urea has rarely been tested.they did it at my last appointment and it's 19.2..extremely high..potassium is 5.0 and sodium 138,normal ranges.Heaemoglobin is 95g/l.they want to consider putting me on erythropoietin stimulating agent?does this help?
I'm just wondering is there any more I can do to slow this decline?.i don't have any ureamic symptoms.im not sleeping well at all and night time urination is a problem,apart from that carrying on with work etc..iv been invited to advanced kidney care education sessions which I will attend.i just think is this it..?can i a save a bit of function.?thanks for reading
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Peri5
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The Sodium Bicarbonate (baking soda) sounds interesting. I read that many people take it,. I've been wanting to know if I can take it because of the claimed good results. My doctors rarely answer questions, so until I go to their urologist, then change doctors, I'm stuck.
Oh! I was watching this lady on youtube who was at 15% functioning. Her doctors were getting things set-up to start her dislysis. But she decided to try natural ingred. at home. But she still has to be careful to not lift, etc When she lifts things, her kidneys burn.
Many thanks for your kind reply and links.i agree that doctors are not that forthcoming with regards to treatments.there is such a long gap between appointments that you never get the answer..so it falls back on us to do the research.
The video you kindly shared is very informative.alot of good tips.definately worth following..
I'm gonna try and chase my doctor about sodium bicarbonate as it seems to be helping others..
when i was in hospital they would come around with a little cup of pills. every time I had to ask them, "what is this ? what is that? what is it for?" they gave me sodium bicarb (I took that; other things I refused such as [synthetic vitamin D=rat poison - look it up] and anything for lowering cholesterol=big pharma scam - look it up) i don't know what it was supposed to do. i dont take it now and have noticed no difference of any kind.
Hi Peri I’m in a similar situation. Just yesterday my egfr reached 14. I have a Drs appointment on Monday. I am on the sodium bio and they work pretty well. I wish you the best. Let’s take this one day at a time.
Thank you for replying..i hope your appointment goes well.can I ask when did you start sodium bicarbonate? What stage? good to hear its helping..yes you are right..got to take it as it comes..just scary when you see a decline and feel helpless.will try and stay positive. Best wishes to you..
I started sodium bicarbonate about 6 months ago. Two pills with each meal. Used for acid I believe. My Dr explained it’s really just like baking soda in pill form.
My doctor started me on sodium bicarbonate tablets when my eGFR was about 25 and my carbon dioxide blood levels were low. I'm not sure that taking sodium bicarbonate is thought to improve kidney function, but having low carbon dioxide level means your blood is too acidic (acidosis), and that can cause additional problems. So I think the sodium bicarbonate is intended to avoid the problems of acidosis--such as fatigue, headaches, loss of appetite--but not to improve kidney function.
The Cochrane Database has an article titled "Is sodium bicarbonate therapy helpful for people with acute kidney problems?" Here is a link to the PubMed summary of that article: ncbi.nlm.nih.gov/pubmedheal...
The article concluded that there is not enough evidence to support or disprove the benefits of sodium bicarbonate therapy.
My own experience with sodium bicarbonate was that I was first told to take 2 tablets three times a day. After that did not seem to work, the doctor kept increasing my dose until I was taking 4 tablets three times a day. After that did not seem to make a difference, the doctor prescribed a liquid form called Oracit, which tasted awful!
Now my kidney function has declined to the point where I needed to go on hemodialysis. (In fact, I'm typing this from my hemodialysis chair in the dialysis center.) The hemodialysis seems to be doing a better job than the sodium bicarbonate because now my carbon dioxide levels are in the normal range, without taking any sodium bicarbonate.
You wrote that you don't have symptoms of uremia, but the sleep and urination problems might be considered symptoms. I'm sure your kidney education classes will do a better job of teaching you ways to preserve your kidney function than I could. I teetered on the edge of ESRD (eGFR of 15) for a couple of years before I had to start hemodialysis. I can't say that I was consciously doing anything to keep my kidney function. It seems to be different for everyone.
I hope you are able to stave off needing dialysis for a long time. But I also want to say that starting dialysis does not need to be the end of a healthy life. I read that some people in this forum have many issues with hemodialysis and peritoneal dialysis treatments, and I wish I knew how to give advice to make things better for them. I can only say that my experience has been positive. I have been lucky to have caring nurses and techs.
Many thanks for responding to my post.i really appreciate hearing about your experiences.I had an appointment with my consultant a week ago and we did discuss sodium bicarbonate.i have been told to wait for the next result before a decision is made if I start.iv read a lot about this tablet slowing the decline but as I see from the link you've posted it can go either way.iv been told that my function is at a level where I need to decide on dialysis and transplant soon.pretty scary stuff but I'm mentally preparing.its encouraging to hear positive words from you.how do you feel on a day to day basis?do you have any restrictions on what you eat or drink?
I do hope I can maintain the little function I have but it's been going down in recent months.great that you stayed at 15 for a few years.are you on the transplant list?I know the hospital want me to have a heart and kidney scan..theyve also started me on Hep b vaccine which was very painful..got 3 more shots to go..
It's good to be in touch with others who have gone through similar experiences.
Many thanks for your reply..
lincoln53NKF Peer MentorNKF Ambassador in reply to Peri5
Hi Peri5,
My experience with hemodialysis so far is that I don't feel any different from day to day than I did before I went on dialysis. Of course, I was suffering from the effects of uremia just before I started dialysis, and the treatments are a big help with that.
One problem that I have is that my blood pressure is extremely low after a treatment. That can make me feel light-headed, but I don't feel nauseous.
I have had a problem with high potassium levels long before I started dialysis, so I have grown used to avoiding bananas, potatoes, tomatoes, oranges, orange juice, avocados, etc. But I have a harder time restricting foods with high phosphorus content like nuts, peanut butter, chocolate, milk, beans, etc. I have a sweet tooth and I used to buy those bags of "fun size" candy bars like Snickers and Butterfingers. Now I have to eat Skittles, which just don't give the same satisfaction as a nice chocolate bar.
And I have to watch how much fluid I put on between treatments. I think some people find the liquid restrictions the hardest part of a hemodialysis diet.
When I was on peritoneal dialysis, my diet restrictions were not as bad. In fact, I had to consume some high potassium foods because the treatments do a good job of removing potassium from the blood. With peritoneal dialysis, you are dialysing constantly, so there is no chance for fluids and wastes to build up. I think that is the main advantage of peritoneal dialysis.
I am not on the transplant list yet, but the doctors at the transplant center where I got my first transplant say there is not reason why I shouldn't get back on the list. I just need to go through some screening procedures.
Thank you for giving me a bit more information with regards to dialysis and how you've coped..sounds like you are doing a fantastic job.i am thinking of choosing PD if suitable.my function is declining.as of today I'm at gfr of 14..it seems to be going down a point every few months.its kind of disheartening as iv tried to make efforts but it's not doing much.i shall be going through a screening process for transplant and put on list.i hope you get on the list soon.
I agree you can beat a good chocolate but we have to resist..chewits are my favourites..
Probably the best things you can do to put off dialysis for a while are to eat a low sodium diet and drink plenty of water or clear liquids. Also, if you have high blood pressure, be sure you take a blood pressure medication(s) to control it. Are you having any other symptoms like itching, jaundice, fatigue, nausea or vomiting? Please discuss all your concerns with your nephrologist and he can help you decide when to start dialysis and all your options (including transplant). As someone who's been on hemodialysis for a year and a half, I can tell you that it may be scary at first but you will get used to it with the help of the staff and your family. In fact you will feel better on your off days after your body gets used to it. They do give me Arecept to build up my red blood cells count, but of course your monthly bloodwork will tell your doctor what to prescribe for you. Everyone's reaction to dialysis is individual, but I find it helps to keep a positive attitude and to find positive people around me (even if I have to encourage them to laugh!). Good luck to you on your journey!
Many thanks for your kind message..iv got my results today and my gfr is going down further..its 14 now.from Dec to End of May it seems to be going down 1 point every few months.this is quite scary.i seem to be doing everything I can to prevent the creatinine from building up but it's still creeping up.i have tried to drink at least 2 litres a day.i am eating a vegetarian diet..doesnt seem to make a difference.on my letter it's mentions secondary hyperthyroidism and I need to increase my alfacalcidol.i don't have any of the symptoms you mentioned..however I have developed a pain near my right shoulder.when I stretch my arm out it hurts a lot.my sodium is at 136 and potassium 5.1.its just the creatinine at 313.it was 305 last time and 279 before that.there is a trend and I can't figure out why it's happening.the consultant will make preparations for getting me on the transplant list.has spoken about pd.i have asked him about slowing the decline but he does not seem to give much more advice than look at diet,stay on medication,bp control.bp is ok not overly high.so I'm a little lost..not feeling as positive right now..will try and pick up..appreciate your help..
The so-called "doctor" at my dialysis clinic pointed at my water container and said "water is not your friend" Dude, we live in the DESERT!!(Arizona) He has given me some very questionable information. Any more, I check EVERYTHING he says. He came in to the clinic 5 minutes after three (count 'em THREE) technicians tried to access my new port, which was so painful it was like sticking a barbecue fork in to my arm (and never hit the vein/artery) and STUPIDLY increased the strength of my bp meds because my bp was high. WELL, what did you think was going to happen when three people stabbed me with needles the size of headphone jacks?
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