What Happens When You Decide to Stop Kidney Dialysis On Your Own?

This is a true cautionary tale of my late husband, Rick, who decided he no longer wanted to be burdened with his kidney dialysis. This is a chapter in the memoir I am writing titled, “Spirit Lifting” To read more from my memoir type “Memoir” in the Search Box. Stay tuned for my upcoming post on “What Happens When You Stop Your Diabetes Medications”. Surprisingly, I am the protagonist in this true story.

Chapter 7 of My Memoir –  Uncovering My Lessons                                                 

People always accused me of picking guys for looks, so this time I decided to prove the opposite.  I should have stuck with looks.  I met Rick on an online dating site four years after my late husband, Howard’s death, married him a year later, and separated the year after that. Rick kept messaging me on the dating site, but he was really not my type, so I kept ignoring him.  But one day I was feeling benevolent and messaged him back.  After a few online conversations I agreed to take his phone number, and I reluctantly called him.  After several conversations, I gave Rick my phone number, and that’s when he dropped the bombshell — He was on dialysis. I tried to be kind, but wanted to immediately shut down the conversation. I am diabetic and so were many of my direct ancestors going back centuries. I had proof a number of them died from complications of diabetes.  My own mother had been on dialysis, and died a few days after receiving a donor kidney transplant. I work trying to fight the disease as a diabetic pastry chef.  I had already lost a husband to a cancer related to diabetes, and wasn’t looking to lose another. I explained all of this to Rick, and could tell I had unwittingly shattered his self- confidence. I felt terrible after hanging up the phone.

Rick called me a few days later, and I reluctantly accepted his call. I should have stuck with my first intuition.  He told me that despite being on dialysis, he was quite healthy – a dichotomy for sure, though he only ate whole foods, was active, and played golf several times a week.  He pleaded with me to give him a chance, and to at least agree to meet with him.  I said I thought he would be wasting his time, so the answer was still no.  But he was persistent and I finally caved in.

That weekend Rick drove the five hours from Washington, DC to Pittsburgh.  From the window I spied him drive up in a beautiful cobalt blue, two seater sports car, an XLR, which is a cross between a Cadillac and a Corvette.  I was used to guys meeting me on a first date peacocking in nice cars. I’d recently met a guy who pulled up in a brand new white Corvette, and another with a silver Jaguar. I’m a non-driver but can appreciate a nice car.

When I opened the door, Rick was standing there with a gift which he handed me, a pretty jade green Kate Spade handbag that wasn’t necessary but appreciated. From my earlier description, I did not mean to imply Rick was bad looking.  He was average looking but aesthetically not my type.  I did like how he was built however, especially from the back.  He was long waisted and thick with a boxy build, and looked pleasing in his pants. He carried a slight paunch in the front (I should talk).  His skin was a rich chocolate brown, just the way I like my men.  He had an agreeable personality.  I liked him, so I agreed to give him a chance.  I remember asking God, What is Rick here to teach me?   All significant relationships and even many minor ones, are there to teach us something. If we ask ourselves what the lessons are, we usually will get the answer after a bit of time. For instance, my dad who had dementia at the end of his life was living with me.  I know he was with me at that particular time to teach me love and patience.

 I had a lot of enjoyable times with Rick.  For the first year he drove five hours to see me every week usually just after one of his dialysis sessions, which I thought was imprudent, but I could not convince him otherwise.  When my mother was on dialysis she would be wiped out after her treatments. It took her 2 days to recover and she spent that time in bed until it was time for her next treatment. It was inconceivable she would be able to immediately get into a car and drive for five hours. Rick also suffered from sleep apnea, and I’d seen him fall asleep at the wheel before, so I was forever a nervous wreck and praying for his safety. After awhile I suggested instead of coming to Pittsburgh for two days each week, it might be better for him to come for one week a month instead. This would be less wear and tear on his body, his car, and less of a chance for accidents, so we switched to this arrangement and he was able to get his dialysis in Pittsburgh while here. We decided to keep both of our homes, even after marriage, and just to commute back and forth as needed.

Rick was very generous. Too generous really, and it made me a bit uncomfortable, which I voiced to him on several occasions. He was always presenting me with beautiful flowers and extravagant gifts including a new luxury car that I had no real intention of learning to drive.

From the beginning, I recognized Rick had grandiose ideas, but I chalked this up to his trying to go overboard to impress me to stick with the relationship.  He would talk about an invention he had a patent on that was going to make him millions.  When I asked him how old was the patent. It was almost fifty years old. Did I mention Rick was close to seventy years old when I met him?  He had already lost the patent years ago by not paying the required annual fees.  The patent was in the public domain, because I viewed it on the Internet.  I gently tried to point out to him that he might want to abandon the idea at his age since he hadn’t done anything with the invention for close to fifty years. He had spent $35,000 on the patent. While the invention might have been relevant fifty years ago, that ship had long since sailed. Rick liked to talk about his invention, but he never took any real action to bring it to market.  I wanted to be supportive, I really did, but how could I be with the information he divulged? He did however, have several recent invention ideas that were worth pursuing, but I knew he would never actually pursue them.

Rick also believed in conspiracy theories, especially those pertaining to the medical field and Big Pharma. If he were alive during the COVID era, he would have had a field day with that. He believed most medical procedures and medicines were unnecessary and just a way to get us to part with our dollars. He said this while being dependent on meds and dialysis for his life. Rick also disclosed he used to weigh 320 pounds and had developed diabetes, but managed to get down to normal weight through dieting and eating practically all of his food and meals from Whole Foods stores.  The  excess weight was blamed on additives the food and restaurant industries were adding to our food supply to fatten us up and keep us reliant on hospitals, medicines and medical procedures.  He seemed to think every industry was in cahoots with every other industry to keep us all in bondage. He took no personal responsibility for his weight gain, but plenty of personal responsibility for his weight loss. After unsuccessfully trying to reason with him, all I could do was shake my head in disbelief.  As time went on I began to hear more and more of his bizarre theories. I need to mention that Rick was also friends with the late comedian, Dick Gregory, who was known for his radical views on many subjects. Some of his views were spot on at times though, especially some relating to food and nutrition. He introduced me to Dick one day while shopping at Whole Foods in Bethesda, MD.

Rick led a fascinating life.  I’m drawn to colorful characters most likely because of my early exposure to the colorful life of my Great- Aunt Rebecca, and because I consider myself to be devoid of color and charisma.  I’m pretty laid back more of an observer than an energetic participant.

Rick and his brother Milton grew up in an orphanage called The Ottilie Home in Jamaica Plains, NY a suburb of New York City. His sister was removed from the orphanage by a relative early on. Rick was there from the ages of 8 to 18.  Now this is the part I find so fascinating…He loved it! I mean whoever heard of someone loving growing up in an orphanage?  Rick’s mother had three children, two boys and a girl. The children were placed in foster care after his father beat his mother so badly she lost the sight in one eye, the hearing in one ear, and suffered severe brain damage. Thus, she was unable to care for her children, who were then separated and placed in foster care. His mother sadly remained in the institution for the rest of her life.

Rick’s foster home was comprised of a father, mother and a young daughter.  He was not happy there. One day after several months had passed his grandmother came to visit. After exchanging pleasantries with the couple she turned to Rick and asked, “How do you like it here?”

Rick defiantly looked at the couple and shouted, “These people don’t treat me right! They won’t let me sit at the table with them when they eat! And they don’t give me my own food! I only get what they don’t eat off of their plates!”  The couple sat there in shock and disbelief as he continued …

“And grandma look at this!” He lifted up his shirt to show her a wound on his side.

“The bed keeps sticking me when I sleep!”  I don’t like it here!”

Rick told me he didn’t remember everything he said, but he remembered singing like a canary, unearthing every crucial and trifling transgression he could think of. His grandmother stood up and turned to glare at the couple. All she said before leaving was, “I’ll be back.” She let herself out the door.  The couple were still sitting there looking stunned. A week later his grandmother picked him up to take him to the orphanage.

The Ottilie Orphan Home was founded in 1891 by John Miller as an orphanage in memorial to his daughter, Ottilie, an only child who died of pneumonia leaving behind two young children. The original building was in Williamsburg, Brooklyn. The facility was moved to Jamaica, Queens in 1901 with the capacity to house more than 200 children. Wealthy benefactors funded the home. The building was a large brick formidable, structure. It had four floors converted into dormitories. One floor for the junior boys aged twelve and under, another for the senior boys, a third for junior girls aged twelve and under and a fourth for senior girls. Each dorm had twin sized beds for each of the children, and metal lockers to house their belongings. There was a large dining hall where all of the children gathered to eat their meals, which were prepared by Polish cooks.

Rick was overjoyed to see his brother and sister there, and there were lots of other children to play with. And the food…Woo Wee! He had never seen so much food before.  There were three meals a day and snacks. He could take as many helpings as he wanted, as long as the dining hall was open. This was a big deal to a child who had been living in poverty. In the summer the children would go to amusement parks Coney Island and Palisades Park, They would go swimming and fishing, play at the beach, go to the movies, there were lots of indoor and outdoor sports. Rick learned to play golf there, and remained an avid golfer through the end of his life.  The children did not cruise the water by ordinary boats, no sir, the rich Ottilie benefactors would line up their yachts to take the enthralled children boating. But the real highlight of the summer was Summer Camp. The children always looked forward to it. Every summer they would leave the home for one month to attend camp. They would each be handed suitcases. When they would open their suitcases, everything inside would be new. Rick says one year they attended Camp Mohawk in upstate NY, where a number of celebrities sent their children.

Twice a year the children would be taken clothes shopping. They would attend plays and be taken to The Waldorf Astoria for lunch. Halloween they would be permitted to paint the windows in The Home with colorful images of witches and goblins. Thanksgiving they would be served traditional holiday fare, turkey, stuffing, cranberry sauce, etc. Every year at Christmastime each child would receive a $100 bill and be escorted to Macy’s to buy toys for the “poor kids”. The staff made sure they never thought of themselves as poor. I imagine they were really buying toys for each other. A large tree would be erected in the dining hall each Christmas. Christmas morning after breakfast, the children would sit around the tree and sing Christmas carols, then they would line up and wait anxiously for their names to be called. One by one they would sprint to the tree to receive their presents. Each child would receive somewhere between ten and fifteen presents. The majority of the presents would be clothing, but there were plenty of toys to play with too. The young children still believed in Santa Claus and The Home did nothing to dispel their belief.

Every Sunday the lot of them would attend First Presbyterian Church of Jamaica. Donald Trump attended the same church. He was two years older than Rick, but the same age as Rick’s brother Milton, so the two were in the same Sunday School class together.  In Trump’s book, Crippled America, there is a photo of Rick’s brother, Milton, standing next to Donald at their church confirmation class. Rick says they would all play together, and sometimes when his teacher was absent for some reason or another Donald would teach Rick’s class.  Donald had a driver and would sometimes offer to give him and his brother Milton a lift to The Home. They always declined. President Trump never treated them differently because they were considered orphans. Rick said he was very kind to them. I guess Trump’s father was one of the rich benefactors that helped to fund Ottilie. Rick knew Donald until he left The Home at the age of eighteen.  I have personally not supported Trump for political office, I am only relaying the facts as told to me.

 There were over 200 children when Rick first entered the home at the age of eight. By the time he left at the age of eighteen there were less than 100.  Rick considers his time at Ottlie to be among the best years of his life. I wonder if this time was really as idyllic as he paints it though. When he turned 18 he joined the military, as he had no real skills and no where else to go. Eighteen was the age he was required to leave the orphanage. I noticed Rick when under stress would always begin anew to talk about his invention and how it was going to make him millions. He would then begin to show me pictures of yachts and estates he intended to buy. This coming from a grown man near his 70’s. I believe this was most likely a coping mechanism he learned to employ when he was a child. He had the magic invention to become rich and powerful and it was going to happen anytime now. The trauma Rick experienced as a child might have led him to become bipolar. I don’t know. To my knowledge, Rick was never given the diagnosis of being bipolar. I am not a physician. I am only surmising.

Almost a year to the day of our first anniversary, Rick drove to Pittsburgh to stay for a few days.  He informed me he had discontinued his dialysis treatments a week ago. He was tired of dialysis.  What???! Of course everyone knows that once you discontinue dialysis you don’t have long to live, so I began freaking out!  Rick’s rationale was he read of a doctor on the Internet who said it was possible to discontinue dialysis treatments, and to take certain herbs he would prescribe that were available through his company. So Rick called and spoke with the doctor, and was confident that after a few weeks his kidney function would return to normal.  Have you lost your mind???! My worst nightmare was coming true. Rick knew I was initially intimidated by the thought that something bad might happen to him being that he was on dialysis.  He was intentionally making my worst nightmare come true.

Leading up to Rick’s disclosure, he began to have a number of severe nosebleeds with copious amounts of blood. I now know that end stage renal disease can cause patients to have deficiencies in coagulation, meaning their blood does not clot properly.

Other than nosebleeds, which he did not attribute to kidney disease, Rick said he was feeling fine and was about to begin taking the herbs the doctor had shipped to him. He took an initial dose of the herbs and began to throw up.  The next day he wanted to return to Washington, DC to play in a golf tournament. I tried to talk him out of it to no avail.  I thought it was very dangerous to drive in his condition, as anything could happen along the way, and he might not be able to get emergency help in time. Plus, I didn’t think he would have the strength to play in a golf tournament. Rick left and played in the tournament as he planned.  Then he began to become more and more ill.  I was calling him several times a day and enforcing the idea that he could stop this nonsense at anytime by calling the paramedics to take him to the hospital.  Then one day right before Easter he did not answer his phone.  I kept calling.  No answer.  I located his daughter’s number and called her. She said she was aware of what was going on and not to worry, her Dad was okay.  I did not hear from him for several more days, and sent his daughter a text and began to call some of Rick’s relatives. No one was forthcoming with any information.  I asked if I should come there if so, I needed to find someone to watch my Dad who was living with me and had dementia. I was told no need to come he was doing fine. However, if he was doing fine why wouldn’t he speak with me? His daughter said she would go around the corner to his house and have him give me a call. Later the phone rang,

“Hello.”

It was Rick, “ Look, I’m okay. I’ve got to go!” Click.

I did not understand what in the world was happening. I continued calling numerous times a day, but his phone kept going to voicemail. No one would tell me anything. So one day after the second week I stopped calling. About a month later Rick called, but I was so infuriated by this time that I refused to answer. He continued to call.  Let him see what it felt like!  After about a month I finally took his call.  Rick said he became critically ill and was hospitalized for three weeks. He was off dialysis for a month when things became critical. He was now back on dialysis. No one thought to call me or inform the hospital staff that he had a concerned wife.  I was through at this point. I was furious with him for several reasons. First, he went off of dialysis without his nephrologist’s consent. WHO DOES THAT???!  There was a strong possibility he could have died! Second, he never consulted with me about discontinuing his treatment. I am your wife! Third, he didn’t tell me until a week had passed, and fourth, why would he put me in such a position?  Not to mention he knew I had a fear of something happening to him, and having to relive the loss of a loved one again. I lost all trust in him at that point. Rick and I separated then, but remained good friends, with no chance for reconciliation. Within a year Rick was dead. He was found unresponsive on the ground, next to his car, in his building’s parking lot. I believe he was on his way to either the Emergency Room or Dialysis.

In Rick’s defense, I later found out that end stage kidney disease causes mood swings, delusions, and even hallucinations. I was not aware of this at the time. It appeared he always had these tendencies. I guess his late stage renal disease tipped him over the edge.

  So what was Rick there to teach me?  I had been talking about writing a memoir, and starting an online bakery to serve diabetics for a number of years, but was not taking a lot of concrete action towards my goals.  I realized I did not want to be like Rick taking the idea for a book and business to the grave with me. He was a strong example of what not to do, but he was also an encourager. He kept telling me to pursue my dreams. Because of him, I jumped into action and made my dreams become a reality.  I also realized I needed to remain an independent woman. No more serious relationships for me. I could say another of the lessons I learned was to learn to trust my gut, however, if I had trusted my gut in the beginning, I would not have experienced the lessons Rick came into my life to teach me.  I have no hard feelings towards Rick, I’m glad he came into my life. I really cared for him and I still do miss him. He added an interesting chapter to my life.

I tear up when I think of Rick getting into his car every week immediately after his dialysis treatments to drive 5 hours to see me. I pray God blesses his soul for that act alone. He had a hard life, seemed a bit nuts as a result, but remained a good man. I’m actually looking forward to seeing him again one day.

Author, Stacey Harris