21 First Person: Lithium and Dialysis

BY NATALIA A. BEISER

At the age of eighteen, I experienced my first full blown manic episode. I was not diagnosed with bipolar disorder at that time; it is not uncommon then for bipolar patients to be misdiagnosed with schizophrenia.

A few years went by, and I again found myself experiencing pychosis in a new city where they recognized my symptoms as bipolar disorder.  There still were not many choices in the treatment cocktail.  While I was floridly psychotic, the nursing staff at the hospital tried to dispense Haldol, and I still had enough mental capacity to refuse to take it after experiencing terrible side effects when it was prescribed during my previous hospitalization.

Lithium was introduced, and I did not know anything about it, other than that life was getting better while I was taking it.  Little did anyone know how lithium would affect the rest of my life.

I have been on dialysis since July 2021 and continue to take lithium, which in some patients causes decreased kidney function. However, I continue to be prescribed Lithium because it is the only proven medicine to curb my personal experience with bipolar disorder.

What readers should know about my experience with Lithium and dialysis is somewhat unconventional, because I lost a kidney to renal cell carcinoma while also having lithium induced nephropathy.  I now have 8% kidney function.

I was told that taking Lithium on dialysis would be tricky, and it is.  For many years, I took a pretty standard dose and the dose needed tweaked as my kidney function continued to drop.

I have tried practically every concoction on the market but have been unable to go without lithium.  As the mood stabilizers also known as anticonvulsants began to be used, they were also helpful.  However, in spite of all the efforts of my medical team, I could not remain stable on mood stabilizers or any class of antipsychotics without lithium in the dosage schedule somewhere.

I have had countless doctors ask me why I still continue to take lithium if it is doing so much damage to my body.  It’s easy.  I enjoy my sanity.  I enjoy life. 

Six years ago, I was devastated to learn that I had chronic kidney disease, advanced enough so that much care had to be taken when prescribing medications so that my kidneys would not suffer.  I took this news very hard, and I knew that the lithium played a huge part in this situation.  I was told that there was a significant chance that I would need dialysis in the future.

I have had countless doctors ask me why I still continue to take lithium if it is doing so much damage to my body.  It’s easy.  I enjoy my sanity.  I enjoy life.  When I am not taking lithium, I am off balance, and no one enjoys being around me.

Developing renal cell carcinoma and requiring a nephrectomy sped up the inevitable.  My emotions over my circumstances have changed over time, regardless of how adamant I have been that I am not going to participate in dialysis.  Now I have done my homework.  I am not afraid to die.  I am just not ready to do so if I do not have to.

I worried about what people will think.  I have been on disability for many years but have continued to hold a job and be a taxpayer.  However, as a dialysis patient, I will cost the system even more money that could be used to feed the hungry or house the homeless.   I wondered if I will feel better or worse on dialysis.

I am frightened by the pain surrounding the surgery,  the physical therapy needed after the surgery, and I wonder, will I still be able to cross stitch?  Will my left forearm be an ugly mess?  Will people stare at it?

The nephrologist walked into my last appointment as he always does and suggested lightly that I should quit taking lithium.  Why now?  The damage is done.  What good would making me a psychotic mess do me now?

Losing renal function is exhausting and painful.  I am scared of dying naturally without trying dialysis because most pain medications that would be used to conquer the pain also make me psychotic.

The good news is that some people do not experience the side effects of lithium as I have.  I have had literally every physical adverse side effect of lithium and continue taking it because it keeps me out of psychiatric hospitals.

Persons taking lithium generally have a “sweet spot” in their serum levels.  Mine always was between 0.7 and 0.8.  If it was lower than 0.7, I was likely to become manic.  If it was above 0.8, I would display tremors.  Everyone has a different tolerance, and I am by no means saying that my “sweet spot” is the same as other lithium patients.

I am now trying to find my dialysis-patient-on-lithium “sweet spot,” which has proven to be challenging.  My psychiatrist and I are guessing that I need to be at a 0.5.  It has been running significantly lower than that, and I have been experiencing some mild hypomania.  In my case, this causes me to exhibit bad judgement in spending money and misplacing and/or losing it.

I have an order at the hospital laboratory where I can have my levels checked as regularly as I feel is warranted.  No one likes to go to the lab, and I probably don’t go enough.  However, it is comforting to know that going there if I am experiencing symptoms, including toxicity, is a simple option.

I never thought that I would so openly talk about this, but I am so thankful that I can still urinate.  At some point, most dialysis patients lose their ability to do so, and the dialysis machine must completely meet that need of removing the waste.

Right now, the dialysis machine does not pull much fluid from me.  For the most part, the machine cleans my blood, as my kidneys can no longer do that.  Before the dialysis machine, I was chronically fatigued in a way that most people cannot comprehend.  I was sleeping in excess of twelve hours a day.  I also had an odor that only I could smell (very common in kidney failure patients) that soap and water could not eliminate.  Also, I itched and swelled.  Right before starting dialysis it became difficult to walk because I was puffy.

I have a three times a week prescription, where I sit for three hours and fifteen minutes on the machine, where the arm that is being accessed through a surgical port must be completely still.  This is difficult!  The technicians can remove you from the machine so that you can use the restroom, but they do not encourage it.

In my experience, the dialysis technicians are fantastic.  They make a bad situation much better, and one can generally talk to them about anything.  One tech’s father’s lost his life due to kidney failure from lithium, which makes us kindred spirits.

It is not advised to skip dialysis treatments.  Yesterday, I did.  I needed a mental health day.  The sun was shining for the first time in a while, and it was hot outside.  I knew that I needed to experience this.  I went to the flower market and bought flowers for the yard.  I planted the flowers and cleaned the patio.   I may regret playing “dialysis hooky” after my treatment tomorrow night.

Without lithium and without that cursed dialysis machine, I would not have been able to enjoy that day of hooky.  Also, without the countless number of people that keep me in their daily prayers, I would not be here, either.  To God be the glory. This is my silver lining. I hope that by sharing my story, I can help others.