Hey folks, My name is Alex Berrios. I was diagnosed with Kidney disease at the age of 26. I am a one-time kidney transplant recipient. It lasted for 13 years. When first diagnosed I did in-center hemodialysis for about 18 months. I crashed into the disease and had no idea what to expect. It was a life changing experience and little did I know that this disease would change the trajectory of my life and show me what my true purpose is.
When I started hemo-dialysis in April of 2006 to starting it back up again in July of 2020 there really had been some changes. The biggest change is currently we are now in the midst of a pandemic called Covid-19. Each visit at the center we get a temperature check and ask if we have any symptoms of Covid-19 ( cough, fever, diarrhea). If we pass those we go and get our weigh in and then to our seat where they get our standing blood pressure and then a sitting blood pressure reading. The nurse then sets up the machine and makes sure the numbers entered match my doctor’s orders.
I feel dialysis in both Hemodialysis and Perinatal Dialysis both have their advantages and disadvantages for the patients. Some patients might feel it’s easier for the nurses to take care of them and do all the work but the disadvantage is you lose some freedom to be able to work or be with friends or family. With PD an advantage a patient has is that they can set their own schedule with their time on the machine and when they need to drain the fluid bags. A disadvantage with PD is you can’t swim out in public pools, hot tubs, streams, or lakes.
One key component for successful dialysis is for the patients voice to be heard and to be a more patient centric experience. When nephrologists and surgeons work hand in hand with the patient, and vice versa from the beginning of the patient’s diagnosis all the way, until dialysis starts or they have an opportunity for transplant wonderful things happen for both patients and physicians.
If innovation in dialysis care is continually brought up with the patient’s voice in mind great innovations will happen. As a patient I really hope there is an opportunity for implementation of programs to help patients like myself not feel alone while they go along this journey.
Alex Berrios Master Kidney Coach/ Patient Advocate