I am 30 years old. My creatinine is 2.85...
Kidney biopsy in 2011 confirmed lupus nephritis.
At the time of diagnosis, creatinine level was 1.8...now this has progressed to 2.85.. I am not sure about my stage. May be 3B or stage 4 kidney disease.
What are my chances of survival .
How much time is left for me.
HI Drakula,
First of all, your chances of survival are fantastic. There are many things you can do to help slow down the progression of kidney disease. It is not my place to diagnose your stage as there are many factors. Talk to your doctor. Check your labs and then start doing some research.
A good place to start is to look over at the list of topics from previous posts on the right hand side of this web site. This will help you figure out a bit more what is going on. You will also see a topic on diet and nutrition. I would sift through some of those posts to see what others have said about slowing down the progression.
Once you have some information, we can answer your specific questions, other than diagnosis.
Best of luck.
Thnx a lot for your kind reply.
I am very tensed.
I only want to delay dialysis.
For how many years, I will be able to delay it.
I want to know about the possibility
I completely understand the worry and being scared. But the truth of the matter, it all depends on you and your body. Since there are many factors that can impact the functioning of the kidney, it is sort of a dice toss. You have Lupus. That's a factor. I do not know that much about it, but there are others on this site who have Lupus who are doing quite well. It depends on what you eat and drink. Again, there are many factors as to what will impact that. For example, do you have high potassium and high phosphorous? How much fluids do your drink through the day. Do you eat high sodium foods, packaged foods and drink alcohol? All those things will have an impact.
There is no simple answer, no crystal ball. But you can be in the driver's seat by becoming educated on these things. But that is up to you to do.
There are many here, me included, that have been at late stage kidney disease for YEARS. Some even improved.
So do some reading and talk to your doctor and know that you're not alone.
Your words means a lot to me.
Very encouraging.
My phosphorus and potassium is in normal range but BUN is elevated along with creatinine.
I don't drink alcohol.
I normally drink 2.5 to 3 litres of water on daily basis.
I mostly take white chicken meat in my diet.
I am scared as the davita calculator is showing me in stage 4 with egfr less than 30.
I have seen a similar post where in it was written than person in my stage is only 3 to 4 years away from dailysis.
I am scheduled to get married next month.
If this is the scenario then I will reconsider my decision of marriage as I don't want my spouse to suffer along with an unhealthy person who is hooked to dailysis machine for hours.
When I was diagnosed with ckd in 2011, then the creatinine level was 1.8 which has now elevated to 2.85 in 2018.
How long can I delay my dialysis.
I am very scared
Hello and welcome Drakula to this very supportive community. I have been following the conversation and fully understand and acknowledge that you are very scared at this time. However there are no certainties in this life and Bassetmommer has given very sound realistic information and reassurance. Surely your partner would be distressed to hear that you are thinking about not getting married because of your health concerns. Perhaps talking to them maybe a very good idea/ What do you think? please put yourself in their position, how would you feel if they said the same thing to you? Please talk with your health professional, taking someone with you (your partner maybe?) Also write down your concerns and questions so that you don't forget anything that you think is relevant .
Very best wishes and good luck to you and your partner.
MAS Nurse and Moderator.
My only concern is creatinine level which is 2.85 along with moderate protein in urine.
I am not feeling much symptoms except fatigue at times.
My dream is to spend a normal healthy life with my wife.
But I don't know how many more dialysis free years are left for me.
I will incorporate all the necessary adjustments in my lifestyle and dietary.
Kindly suggest me few.
Whoa, Drakula,...you are going to be ok.... hang on there. First of all, dialysis is not a death sentence, it is a life change. Second of all, there are many of us who are at Stage four and are doing just fine, thank you. I technically was stage 3 b for many years and have been stage four for at least 7 years or more. I am years away (I hope) from dialysis. I am 64 years old and have a auto-immune disease, and other health issues. My progression has been a VERY slow decline and only because I was not educated on what to eat and do about it. Since then, I have staved off further decline. There are MANY people who live with Stage four FOREVER. It does not stop me from living my very full life. It should not stop you either.
As far as your marriage....well... really??...do you want to cancel the marriage because of a possibility that maybe many years away? Would you not stand by your spouse if it was a reversed situation? Dialysis is not like what it sounds like you have in your mind. You can do it at home now at night while you sleep. kidney.org/atoz/content/hom... You can have a kind of dialysis that is NOT being hooked up to a machine and you can do it anywhere called peritoneal dialysis: kidney.org/atoz/content/per...
The other thing... there is transplant. VERY successful transplant. Get your doctor to get you connected with a transplant list. You're young, you have a real good chance for that IF need be.
So start with your doctor.
We are here for you. Congratulations on your up coming nuptials. Enjoy them as it is one of the greatest moments of your life.
Ur words increased my hope.
Kindky suggest mee the necessary lifestyle and dietary changes.
I want to slow the progression.
My doctor is giving me blood pressure medicines along with diuretics tablet.
In the initial years, I u was on cyclophasmide (endoxen) and corticosteroids.
But from last 4 years, only diuretic tablets and BP medicines.
Am I doing right?
I want to delay it for Years.
Waiting in anticipation.
Thnx a lot brother
Drakula, please begin doing your work on becoming educated by looking at the web sites mention by Lowraind and on our topics list. I am not a clinician and cannot give your prescriptive advice. I am not sure where you are from, so I do not know your health system. As I have said, the first steps is get in contact with your doctor and get a better educated diagnosis. See if he/she can recommend a renal dietician and also, if they are not, go to a nephrologist.
I don't want you to feel we can not support you, but at this point, you need to advocate for yourself and develop a clinical support team. It is crucial that everyone involved is aware of all your health concerns and working towards a healthy outcome. Make sure the medications you are on are a benefit to you. BP meds and diuretics can have an impact on the kidney both good and bad. So make sure it is helpful medications. Again, only your doctor can tell you that.
Stress is a major factor in contributing to health issues. There is so much you can do to help yourself. YOU WILL BE IN CONTROL of this soon.
Breathe.......
Mine is also an autoimmune disease.... Lupus nephritis they said
Drakula,
You have not mentioned exercise. From my own research and from others who have posted, I have learned that strenuous exercise can have a negative effect on your kidneys. Since you are a young male, you may be doing too much and too strenuous exercise. Something to consider.
Also, please follow the advice that Bassetmommer has given you. She, Mr. Kidney, and others have given dietary information many times. These resources may be helpful as well:
National education, support and advocacy organizations:
• DaVita Kidney Disease and Dialysis Forums is well known for their recipes but they also have a forum for patients too.
• Renal Support Network provides many support and advocacy services including a phone support line.
• AAKP is a comprehensive resource focusing on the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.
• National Kidney Foundation provides a portal for patients too.
Most of all, do not stress yourself more. Stress also can contribute to worsen your health. Read the posts, do your own research, prepare questions, both for your doctor and for the members of this site.
Good luck,
lowraind
Hi Drakuka.
Sorry you are having to go through this. I too have lupus nephritis. I’m 27 years old and got diagnosed at 16. Currently at eGFR 28-32 roughly and fluctuates between these numbers atm. I have asked my nephrologist similar questions as you’re asking regard dialysis and time scale. He seems optimistic as long as the CKD and Lupus remains controlled so try not to get overly worried straight away. With the right medication, disease progression can be very slow, and sometimes progression can be halted. I’ve had some major issues this year but have ended the year back at roughly the same eGFR than back in January so there really is hope. Find yourself a nephrologist you trust and with the right medication then fingers crossed you can maintain function.
Good luck with everything and please let us know how you get on.
Wishing you all the best!
Thnx for the reply.
At the time of diagnosis, what was your egfr?
Kindly guide me on your dietary habits.
What is your water intake?
When I was diagnosed, initially I was given endoxen which is cyclophasmide and then after few months the doctor shifted me to corticosteroids.
But from last 3 years I am only taking BP medications on advice of my nephrologist.
During this time, my creatinine and urea level is on continuous rise.
The creatinine in now 2.85 which was 1.8 in 2014, 2.2 in 2015, 2.5 in 2016, 2.7 in 2017 and now 2. 85.
Kindky suggest me the necessary lifestyle and dietary changes.
I want to slow the progression.
My doctor is giving me blood pressure medicines along with diuretics tablet.
In the initial years, I u was on cyclophasmide (endoxen) and corticosteroids.
But from last 4 years, only diuretic tablets and BP medicines.
Am I doing right?
I want to delay it for Years.
Waiting in anticipation.
Thnx a lot brother
Morning Drakula,
It would be hoped your nephrologist is keeping you on the necessary medication for your specific needs. Everyone’s treatment will be different however to try and answer your question, I’m on a large mix of drugs including prednisolone (steroid) tacrolimus and azathioprine (these are immunosuppressants to try and achieve similar to what your cyclophosphamide would have been used for), ramipril for bp, hydrocychloroquine which is widely used in lupus patients, some preventative antibiotics and then furosemide if and when I need to take it for water retention. It seems strange you are no longer on any immunosuppressants etc with your creatinine on the rise, but again I don’t know your individual case, there could be many reasons for this treatment choice.
In terms of diet, I can eat and drink fairly normally and have only recently had issues with increased potassium which now is something I try to limit. Sodium is also a big one for us to try and reduce but in terms of fluid etc, I’ve been advised by nephrology to just be sensible and not drink too much but as I excercise a lot, it is important to keep the fluids replenished. At diagnosis when oedema was a big issue, fluids were restricted to 5 small glasses a day but this isn’t an issue at the minute.
Regarding eGFR at diagnosis, I’m not going to lie to you, it was a long time ago so can’t remember exactly but I think probably around 65/70. Now granted that does mean there has been a significant decrease over the years but remember this has happened over 12 years which actually isn’t too bad and I count myself lucky to still be functioning adequately. This disease is very strange and every case is individual however so what works or is advised for one person may really not be for another. Anymore questions please feel free to ask.
Wishing you all the best!!
Hello ecc_active
At the time of diagnosis(12 years before), what was your creatinine level?
What is your present creatinine level?
From how much time you r able to maintain your gfr between 28 - 32.
Hi Dracula,
Unfortunately I have no idea what my creatinine was at diagnosis so sorry. At 16 years old the numbers I left completely to the nephrologist and put all my trust in him so I can't help you there.....but currently it is sitting around 190umol/l with some tests being higher and a couple just dipping under the 190 mark. eGFR has been sitting around these numbers for about 6-8 months now but in terms of how long that is maintainable it really does depend on what happens from here...... it could stay at this level for years.....It could diminish in months but lets hope not. This disease as well as many others are increadibly unpredictable so i'm afraid no ones results or experiences will be able to give you a full account of what will happen to you; but hopefully it can give you an insight into what other lupus nephritis sufferers have/are experiencing. 
All the best
I lost my kidneys to lupus almost 10 years ago. You’ll survive a long time. Don’t be afraid.
Christl
How r u nowadays?
I hope u r not on dialysis
Kindly inform me about your present health condition
On the quest for knowledge
Went from Stage 3 to Stage 5 in 2 years - low protein diet?
Kidney declining and need advice please
I'm feeling confused because I'm getting no treatment from any hospital and having trouble getting appointment with a nephrologist.
Perplexed at GFR decrease after a month of changes???
