Hello everyone, about a year and a half ago my wife (48 years old) had her lithium dosage increased. Since then her EGFR has gone from normal range down to 26-30, depending on the test. Creatinine was high, all other tests normal, no irregular urine results on urine test. She got a biopsy done and it was revealed that lithium was the culprit (the doctor called her and told us to get off lithium and lose weight). After we got this news we had some relief knowing that this could be probably be controlled by lithium cessation.
When she had her check up the other days the kidney doctor went over the same things he had told her over the phone but also snuck this is "I want you to lose weight to get down to the recommended BMI for a transplant, this isn't imminent but it normal takes kidney patients a long time to lose weight when they need a transplant". Freaked out, we asked him to explain and he basically said that her kidneys are weakened and in 20 years she could need a transplant if anything in that time sent her over the edge. When I asked him if that could be in the next 2-3 years he didn't have an answer. I am assuming he needs to see how her body reacts to losing weight and getting off lithium by the next check up in 3 months, to have a clearer picture.
Now we are both severely depressed and full of anxiety. We are going to do exactly what he says it's just the unknowns that are scaring us. We were hoping that if she gets off the lithium she would see a modest improvement in function and a transplant would be avoided, at least for a very long time. Could this still be the case. Does anyone have insight on this type of issue. Just trying to hold it together and be strong for her, but it's tough.
Written by
sean1788
To view profiles and participate in discussions please or .
I'm sorry that this has become a problem for your wife. Do you think a transplant would be too hard for her to handle? I hope you are checking other meds like no NSAIDS (my problem). Also, check about the CKD-friendly diet esp. less salt. I'm assuming your nephrologist will or has mentioned some of these things. Most of us have felt overwhelmed when we began this journey. It does get easier as we educate ourselves. God bless both of you.
Thanks for your advice! No, I don't believe it would be too tough for her to handle. We are just frightened of the procedure and the possible complications that could come with such an invasive procedure. The hope is that we can go as long as possible without reaching that outcome.
I was diagnosed with bipolar disorder and put on lithium in 1989. Much was unkown about lithium and the long term effects it has. I had repeated bladder infections and in 2011 I went to see a urologist. An untrsound was done and that is when I found out I had third stage b kidney disease. I was freaked out and could not quit crying. My Pysciatrist slowly weaned me off and my kidneys stablized and have been for twelve years. This is a huge problem with lithium and I am sure there are others with this same issue. I have been eating a deck of cards of protein most days but now am going on a plant based diet. With all that being said I would be suspicious if that doc could look that far into the future and in 20 years you need a transplant. Drink water, eat healthy and exercise every day. There is so much more to labs that can be the tell tale of kidney function. I told my nephrologist that I want to see her every three months and get a renal panel. Then you can see the trends of your lab numbers. If it were me I would get a second opinion since I feel that your doc is not supportive. I try to keep in mind that my kidney damage is due to a drug and not an inherited disease. There are so many advances in slowing kidney function that I think about. I see just in the last five years there has been progress. There is so much hope about treatments. Do I worry? Yes I still do but I have strong faith and believe in science. All I can say is that I know how you feel and it is terribly worry some. However as time goes on and you learn more facts it isn't as scary. Best of luck to you!
I'm glad it stabilized after you got off the lithium. I'm hoping the same for my wife. It's good to know there are some great advancements in treatment being developed. Keep strong and thanks for the support!
It is very scary at first but the more you learn the better. There are many ways to slow progression down with kidneys plus new medications have come out to help with that also. From what you mentioned it seems like your wife is still about stage three B. (Lower end) Loosing weight and lifestyle changes help tremendously. I feel very hopeful for your wife. Keep the faith.
The same thing happened to my mother. She was put on Lithium for 'anxiety' by a psychiatrist. No one followed up with her afterwards. No regular blood tests were taken. Her doctor did no follow up. 5 years later she almost died in hospital because her blood was toxic. Her kidneys are damaged from the Lithium, and she spent almost 5 days in hospital detoxing until she was stable enough to come home.
Her kidney function recovered to just barely above needing dialysis. Luckily, once off the Lithium, she stabilized and even went up a few points in kidney function. That was back in 2017. (No mention of a transplant though because she's in her seventies, and apparently they don't do transplants for seniors)
I know it's scary. I was petrified.
But getting off Lithium when she did saved her life. And it kept her kidneys from deteriorating further.
As for the weight loss thing - tbh it's what all doctors throw at patients that don't fit their views. My mother is overweight (it's a family/genetic thing. Also she can't walk because of no cartilage in her joints, osteoarthritis and intense chronic pain, so it makes it hard for her to lose weight. She barely eats enough food.) and they keep trying to force her to get bariatric surgery. She's in her seventies. Also it's a highly invasive surgery that rearranges your digestive system.
(If your wife decides to go that route, please, PLEASE, do a lot of research first. Your doctor may try to bully her into it. It is a lifelong commitment of constant vitamins and supplements because you don't absorb nutrients properly.)
But I can attest that getting off the Lithium, WILL HELP. If the meds were for a mental health issue, I really suggest going to a psychiatrist to switch over to a less damaging medication. Though be aware that any that are filtered through the kidneys might not be a good idea.
Thank you for the support! I'm glad your mother was able to get off lithium in time. I wish doctors would do a better job at keeping track of labs after they prescribe a medication or increase its dosage. It's frustrating thinking about how both of our situation could have been avoidable.
My wife is currently down to 1/3 of the dose that she was on and in less than a week she will be off entirely. She is also hitting the exercise and diet hard and I am going hard with her, so hopefully we will see some progress. Thanks again and good luck to you and your mother!
I would strongly recommend a whole food plant based diet. No meats at all. Substitute beans, rice, etc. for protein. Google it, there are a lot of videos on you tube. Weight will fly off her and her kidney function should improve.
Ocean is correct. I lost 50 pounds pretty effortlessly just by cleaning up my diet, going to a renal based diet, somewhat plant based and getting more movement. I tracked everything I ate and although a pain, I learned so much about food.
It is a pain, I agree, takes time and commitment. I went from gfr 51 to 72 and holding. I just eat to live not live to eat - as the expression goes..... But I save myself alot of worry by knowing I'm not adding to the problem but working on the solution.
As a person that was on lithium and has CKD I would like to mention that when you come off lithium, most will lose some weight. Lithium itself can cause weight gain as many psychiatric drugs do.
Hi. I was diagnosed with bipolar in my mid thirties. I’m 64. Was on lithium for years but my dr pulled me off it maybe 10 years ago saying I’d been on it long enough. It’s also old school and there are Alot of newer and in my opinion better options I also found my symptoms decreased when I hit menopause for what’s that worth. Be careful what she takes as I also now have tartive dyskinesia from all the drugs I took over the years
I had an undetected UTI two years ago. The trauma resulted in ckd3. Most of my issues right now are sugar and cholesterol related. My daughter in law is a natural Dr. She advised me to go whole plant. She did recommend maybe twice a week eating chicken or very lean meat. Like a filet. Also fish. I do eat eggs. I eliminated all grains, anything processed and no dairy. The one truth i have discovered is you are what you eat. This is doubly true for folks with CKD. One book she recommended was by Dr mark hyman. I kinda devised my own diet plan based on what I like. We’ve tried all kinds of recipes. Most ending up in the trash but we’ve also found some recipes that aren’t too bad. It’s a change. I’ve lost 12 pounds since 1/1 and my vision has improved.
It’s hard enough having bipolar so getting ckd3 wasn’t welcome news. But you guys have this. The more you educate yourself about what you are eating the better you’ll feel. Don’t be scared. You’ve got this. It’s all in the diet.
Currently we are eating lean protein, vegetables, she some brown rice/ while grain carb with a big emphasis on portion control. It seems to be working well so far, she's lost a good bit of weight. Thanks for the support and good luck!
Deep breath. It will be ok. It took me a year to get through the anxiety, but I'm finally on the other side.
I have CKD from a very uncommon cause - dehydration. when first diagnosed I was told to expect dialysis within a year because that is the "normal" trend. I've cut down on the caffeine (damn diet pop in restaurants is always caffeinated,) taking 2 max doses of anti diarrheals, drinking non stop, exercise and diet changes I have stabilized. I was down to and eGFR of 7 at one point. I was 30 last week! After 4 years in stage 4 I moved up to 3b! HUH! Probably from losing more weight.
Transplant programs are VERY nasty about weight. Frankly, they discriminate against fat people. They have cutoffs based upon BMI. It is very arbitrary. There are no actual studies of transplants in people at my weight. At 30 you are "obese" and over 40 you are "morbidly obese." So at 224 I was in the exact same boat as someone who weighed 1200 pounds. Many transplant programs have a strict 30 cut off. Mayo Clinic and the University of Minnesota wouldn't even let me have an intake assessment. Luckily the Hennepin County Medical Center is more flexible. They listed me under the condition I got under 200 lbs. I went from 224 to 190 on ozempic, then crawled back up to 214. I switched to mourjaro and am now at 187 after 9 months. My high school weight was 175 and i don't expect to get below that. I have lots of factors against me - genetics, menopause (61), insulin, very low metabolism and I can't eat veggies due to my ostomy.
You don't indicate what the current BMI is. If it's over 30 it is very difficult to get listed for a transplant. While the thought of transplant may be overwhelming to someone whose been healthy, I'm not concerned about that at all. I've been taking a cup full of pills since I was 18 and first got diagnosed with ulcerative colitis. I've spend MONTHS in hospital before. Transplant surgery will be a breeze compared to losing my colon. I'm must more anxious about dialysis since it will impact my ability to work and have health insurance.
Good luck. Try to find a kidney Dr. know actually know something about lithium damage. None of my Drs. know anything about dehydration damage.
It's awesome you were able to improve your kidney function. There is a lot of info out there that says that people don't typically see improvement, but so many people on here have seen improvements over time. She needs to lose about 40lbs to be eligible... my hope is that when she is off the lithium and loses some weight we can get her eGFR up into stage 3b from 27 and we can avoid a transplant all together. Crossing my fingers.
Again, thanks so much for the support and good luck!
our son was treated w/lithium and Dr A thought Dr B was watching and Dr B thought Dr A was watching- nobody watched. It did take about 20 yrs then early COVID hit and finished them off. He was as type O (hardest to get transplant) was on list 7yr 4 mo an of that about 2yr dialysis. Loose the weight and get on the list. Ask friends, relatives and neighbors if they would donate. Several www sites for this too. Don’t waste time
I'm sorry to hear to about your spouse's outcome with lithium. My brother took haldol for his mental issues and that was also very hard on his body. We waited too long to take him off it, and he passed away from its damage. So those old timey drugs can be very problematical. But, be optimistic. Your spouse's situation was caught in time. As your doctor noted, dropping lithium should help the situation immensely. As for the weight, that can be remedied too. I personally appreciate your doctor - his frank statements has led to a conversation that likely will give your spouse a long, quality life. I would keep him! My diabetic hubby finally woke up when he was bluntly told by his nephrologist he had only seven years to live without serious changes to his lifestyle. That got his full attention and prompted him to finally addressed his diabetes - to take action on his diet, lifestyle, and more. He made huge strides - not in time to stave off dialysis - but the outcome worked to his benefit to get off dialysis and get a transplant. As for weight, in additional to skeletal issues, weight is extremely hard on kidneys and your heart and other organs. It's a big threat. The added mass requires lots of extra work for the kidneys and heart in particular. With a precious transplant, a person receives only one, making it more likely to struggle and fail when extra weight is present - so, yes, dropping the pounds is very good - for many reasons. However, please do not go on the renal diet without oversight from a doctor and looking at the labs. Since that diet manipulates very important electrolytes required for proper organ (heart, kidney, brain, etc.) function, you'll need periodic blood draws to keep them in the normal range. You and your spouse seem very motivated. I think you'll do great in turning the situation around and living a nice, long life.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Need more room- suggestions?
Need support, overwhelmed doing own research, new here 
Really need support, prayers and advice. I'm sad and scared.
Frustrated by Kidney Transplant Evaluation
