A Patient’s Perspective on Nocturnal Hemodialysis
Fourty-one year old Eulalio Gonzalez is a high school Spanish teacher from San Antonio, Texas. It’s not unusual for him to work 10 to 12 hour days. This is unusual for most dialysis patients in the United States. Lalo, as his friends call him, says he has the energy to work long hours and participate in family functions because of nocturnal home hemodialysis (HHD).
Doctors diagnosed Lalo with glomerular nephritis (inflammation of the kidneys) during his senior year of college. At the time, he also learned he had only one kidney. Doctors told him dialysis would be in his future.
After graduation, Lalo started working as a high school athletic trainer. He loved sports and he loved being around young people. Lalo spent 14 to 16 hours at school - especially during a sporting season. He loved the job. But soon, the long hours started to take a toll on his body. He did not have the energy to get through the day. His doctor told him he needed to start dialysis, but Lalo wanted more time. Then one day during football season, with the Texas heat barring down on him, he became really sick and almost fainted. He knew the problem – his kidney.
The following Monday Lalo walked into a dialysis unit for the first time. “It was a culture shock. I thought to myself – all these people are old and sick. And then I realized I’m sick just like they are.”
Prior to his first visit to the dialysis unit, Lalo had spoken to a nurse at his doctor’s office about home dialysis therapies. He would not be able to do peritoneal dialysis (PD) because of his weight. At the time, he weighed close to 400 lbs. The therapy would not get rid of enough fluid from his body. HHD was a possible option, but he wanted to continue to work. The nurse suggested home nocturnal hemodialysis. It would remove enough fluid from his body, give him the energy he needed to get through his day and he would be free during the daytime hours to work.
But then he walked into the dialysis unit.“I heard all these sounds. Why are alarms going off? Why is the light on all the other patients’ machine green, but mine is red? It scared me. I felt I would not be able to do dialysis at home.”
This was a difficult period in Lalo’s life. He felt he could not devote more time to dialysis. He had given up his dream job as an athletic trainer and started teaching. On his dialysis days he was leaving school an hour early to make it to his dialysis session on-time. And he still felt tired all the time despite losing 50 pounds within the first two months of dialysis.
Lalo’s dialysis nurse told him he needed more dialysis. “My body was too big, she told me. And the time I was spending on the in-center machine wasn’t enough to remove all the fluids I needed to remove.”
Lalo asked the dialysis nurse if he could revisit the idea of doing nocturnal dialysis. At the time the dialysis unit did not have a home nocturnal dialysis program, so Lalo would have to perform in-center nocturnal hemodialysis. “They wanted me to spend the night in a dialysis chair! They did not even accommodate me with a big chair. I’m 6 feet tall and 350 pounds and you want to put me in a chair that’s made for a 5-foot 8-inch, 150 pound male? And then you want me to spend the entire night in the chair?
No, I can’t do that.”
Lalo decided against taking part in the in-center nocturnal hemodialysis program. He continued with standard in-center hemodialysis. Months passed and his dialysis center announced it was developing a nocturnal HHD program. Lalo was one of the first volunteers. He went through the training program with his mother – who would be his partner. He knew he could do it.
“The biggest thing for me was cannulating (inserting dialysis needles) myself. If I could not cannulate myself, I would not be allowed to do dialysis at home. When it was my turn, I said a little prayer and put the needle in. Since that time, I’ve been doing it myself.”
Now, Lalo gets home around 6:00 p.m. He has dinner, visits with his mother and watches a little television. His mother starts prepping for the dialysis session soon after. The dialysis machine sits next to Lalo’s bed. He performs the tests for the water quality. He also cannulates himself. Lalo says he’s become used to the machine’s noise and he’s able to sleep soundly through
Lalo and his mother have telephone access to a nurse and technical support 24 hours a day – seven days a week. He has had a few minor technical problems and he’s been able to fix those problems himself.
How Has Life Changed
Lalo is living life to the fullest. He’s back to working full time as a teacher - a job he is passionate about and looks forward to each new day. He has the energy to put in long hours during the day and spend quality time with family and friends in the evenings and on weekends.
Lalo is also on fewer medications. “I dropped the number of high blood pressure medicines I take. Before nocturnal dialysis I was on three different high blood pressure medications. Now, I’m down to one. At one point I was taking 15 different medications. Now I’m down to seven. I think that’s a big difference.”
Lalo understands that home dialysis is a life-changing commitment. A patient who chooses to take his therapy home must be willing to
stick with the prescribed treatment.“You cannot say I am not going to dialyze because I do not feel like it. Or say, I have an appointment and I’m not going to do it tonight. You really need to do your dialysis. You don’t want to be someone that doesn’t follow their dialysis prescription time.”
Advice for Patients Considering a Home Therapy Program
“The advice I would give someone considering a home dialysis program – don’t get into the program until you are ready. I hope there are people out there in the same situation that will take advantage of a home dialysis program. It has improved my life tremendously. I get to do my therapy in the comfort of my own home and in my own bed. This therapy allows you to take control of your health, and that’s very powerful and it helps you get through the long days. It helps you get through the tough times.”
Jerome A. Bailey is Editor of At Home with AAKP and the Communications Manager for AAKP.
This article originally appeared in the November 2009 issue of At Home with AAKP.