All About Dialysis: A Patient's Point of View: A Personalized Experience in Dialysis

By Buen Domingo

 

  This is a compilation of my Coping With ESKD blogs at domingobuen.blogspot.com from March 20, 2014 up to May 7, 2019 in chronological order. This is all about my actual dialysis experiences, writing essays and research work as a dialysis patient at the Hemo Dialysis Unit (HDU) of Gov. Celestino Gallares Memorial Hospital (GCGMH).  This book also include my know-how and achievements in running the Bohol Association of Hemo-Dialysis Patients and Watchers (BOASHEPAWA) as Chairman of the group. I started dialysis on September 29, 2011 and it has been almost eight years since then and I finally realized that it would be easier for me to share my experiences and articles about dialysis if I can print it in a book so that my fellow dialysis patients, doctors, nurses and those people who are interested about caring for their kidneys to avoid kidney disease can read and share it to more people. 

     This book aims to provide information and knowledge about the intricacies of dialysis, what is it all about and what to do and what not to do by the patients. I am not a medical practitioner, but through my personal experiences and continuous research about dialysis, I was able to know the major aspects about dialysis and share it to my co-dialysis patients through my dialysis blogs. This book will also show how I have coped with End Stage Kidney Disease with positive outlook in life, find ways to make my time useful through writing, research and still hopeful and courageous despite a life of pain and uncertainties.

• Language: English
• Publisher: BookRix
• Release date: Jun 3, 2019
• ISBN: 9783748706205

Book preview

Dialysis Topics

INTRODUCTION

This is a compilation of my Coping with ESKD blogs at domingobuen.blogspot.com from March 20, 2014 up to May 7, 2019 in chronological order. This is all about my actual dialysis experiences, writing essays and research work as a dialysis patient at the Hemo Dialysis Unit (HDU) of Gov. Celestino Gallares Memorial Hospital (GCGMH).  This book also includes my know-how and achievements in running the Bohol Association of Hemo-Dialysis Patients and Watchers (BOASHEPAWA) as Chairman of the group. I started dialysis on September 29, 2011 and it has been almost eight years since then and I finally realized that it would be easier for me to share my experiences and articles about dialysis if I can print it in a book so that my fellow dialysis patients, doctors, nurses and those people who are interested about caring for their kidneys to avoid kidney disease can read and share it to more people.

I would like to thank my family especially my wife, Belen K. Domingo, for giving me the full support that I need in order for me to achieve my goal of sharing my dialysis knowledge to everyone who are interested about Hemo-Dialysis. I would like also to thank our Nephrologist, Dr. Mayida Ybanez for giving her time and untiring effort to help dialysis patients like us. My gratitude also goes to the doctors and HDU Staff of GCGMH for their sacrifices to fulfill their duties to us and most of all, I would like to thank and acknowledge the efforts of Dr. Mutya Kismet T. Macuno, Medical Center Chief, in providing us a new dialysis center comparable to those in Cebu and Manila. Dr. Macuno was able to provide us dialysis patients with almost free dialysis service through her adept skill in coordination and fund sourcing activity with private and government officials.

This book aims to provide information and knowledge about the intricacies of dialysis, what is it all about and what to do and what not to do by the patients. I am not a medical practitioner, but through my personal experiences and continuous research about dialysis, I was able to know the major aspects about dialysis and share it to my co-dialysis patients through my dialysis blogs. This book will also show how I have coped with End Stage Kidney Disease with positive outlook in life, find ways to make my time useful through writing, research and still hopeful and courageous despite a life of pain and uncertainties.

This book should serve as a guide and I made sure to the best of my ability the accurateness and completeness of the topics in my book. However, due to human limitation, I will not be liable to any untoward incident or injuries, losses or inaccuracy of information that may arise in reading my book.

Chapter I: Dialysis Topics:

 1. The Beginning:

This article is about when my kidney disease began, how it progressed and how it became an End Stage Kidney Disease. It presents how old I am when I was diagnosed and what happened afterwards. This was written on March 4, 2014.

As the pages of my life are turned, it becomes clear to me that every person in this world has his/her: role in life and own story to tell. This is my story. 

It all started when I was about 20 years old when I had my urine examined due to a suspected urinary tract infection. Not only I had an infection but the result showed that my kidneys are leaking proteins which means that something is wrong with my kidneys. The doctor diagnosed it to be a chronic kidney infection and will recur every now and then. My reaction was fear followed by a calming or re-assuring thought that maybe the doctor was not accurate in her diagnosis and all will be well again after I finished taking my medicines. So years have passed by and I did not concentrate on the condition of my kidneys. I continued to live normally except for the occasional bouts of colds and flu with sore throat and frequent stomach discomfort which I associated with hyper-acidity. So I took constant dose of anti-acid medication which I realized now that it had aggravated my kidney disease and the stomach discomfort that troubled me was due to my failing kidneys because I have read that indigestion is one of the symptoms of renal failure. I graduated from college, worked in a government agency and even started my Master's Degree, and then I started to feel pain at the back of my neck with accompanying nausea (feeling or urge to vomit). I felt more of these symptoms after I ate a salty meal. I decided to go to the hospital and had a check-up. My result showed that I have high blood pressure and so the doctor gave me a maintenance drug to control my BP. I was about 25 years old then and again I realize now that the damage to my kidneys at that time was increasing.

I continued with my life as usual, ate whatever food that I want and drunk alcohol occasionally but I continued to take my maintenance medicines on a regular basis. I still experienced symptoms of high blood pressure especially when I over ate or drunk too much alcohol. I did not put much attention to my disease until I had a medical check-up again. I am doing field work for a private bank at that time and I constantly felt body aches and discomfort. This is when my doctor said that my heart was affected by my uncontrolled high BP. I am sicker because of my un-treated kidney disease which is still not pronounced then because the Creatinine (indicates kidney function) level in my blood is in the upper normal. My doctor said that I should eat less fat and more on fish and vegetables. This is the start of my DIE with a T (diet) which I did not follow religiously. One time I felt ill and I was hospitalized in Tagbilaran City. I did not feel well even after I checked out of the hospital so I decided to have a medical check-up at Cebu Doctors Hospital and the Nephrologist advised me to undergo a workout (a series of physical and laboratory check-ups). We have to cross the sea to get to Cebu and we don't have a house where we can stay so I decided to be admitted to the hospital while waiting for the results. I thought my stay will only take for a week, but weeks have passed and my Nephrologist prescribed me a medicine for high BP that unfortunately gave me an adverse reaction. My BP shoot up to 200/110 and three doctors stood by my bedside since I was also suffering from Schemic (lack of oxygen) heart disease then. I was lucky, it was not my time to die yet. I got out of the hospital after a month, spending my Christmas and New Year's Eve in a hospital room. The hospital bills? Our office paid the expense since it was part of my benefits.

I religiously took my medicines, followed my diet and had regular check-ups at Cebu Doctors. However, it was not long enough after I was hospitalized and I was back in Cebu Doctors Hospital again due to the effect of my steroid medication which affected the beating of my heart. I was also admitted in St. Lukes and Capitol Medical Center in Manila. When I was in the hospital in Cebu, the doctor said that there will come a time that I will undergo dialysis and I prayed to God if he could give me just six years without dialysis. I monitored my Creatinine once in a while and it was stable at 2.5 to 2.8 and as the years passed by, I thought my kidneys are good and forgot about the medical check-ups. I ate what I want and indulge with alcohol. One day I went out for brisk walking and I had to walk through a steep road, I was not expecting that I would have difficulty in catching my breath but it happened that I almost passed out catching my breath. I am getting old I told myself and didn't take it seriously but as the months passed by it is not only difficulty in breathing that I felt, I also felt nauseous and vomited as if I could spill out my stomach. One night, my mouth was very dry and I am very thirsty. I thought that my blood sugar is high so I decided to have my blood sugar level and Creatinine checked in the laboratory. The result shocked me because my blood sugar level is normal but my Creatinine is 13 which is very high compared to the high normal of 1.7 to 2.0. I immediately contacted a Nephrologist and she advised me to have a Complete Blood Count (CBC). The result showed that my Hemoglobin (helps in distributing oxygen to the cells) is only 6.0 while the normal is 12-14 and I am anemic (low Red Blood Cells count). I realized that my difficulty in catching my breath is due to my anemic condition and my vomiting is about my failing kidneys. My Nephrologist advised me to be admitted as soon as possible. At the hospital where I was admitted, they transfused me with 4 bags of blood and operated on me for my emergency access for dialysis.

I prayed for six years without dialysis since I was admitted at Cebu Doctors Hospital, that was twenty years ago! God gave me 20 years instead of six years. Praise the Lord almighty!

2. I was Once a Dialysis Rookie:

This is all about: when I started having dialysis, what I have experienced and how I felt as a new patient, my first blood transfusion, my operation on my dialysis access or Fistula and my new classmates or fellow dialysis patients. This was written on March 11, 2014.

 Dialysis session at Capitol Dialysis Center in Quezon City with my wife and DOH Assec. Dr. Enrique Tayag

We all had our milestones in life. Sometimes we have experienced them with happiness, sometimes with challenge and pain. What matters most is how we dealt on them. Was it with fear and uncertainty or was it with courage and hope?

One of my fears before was entering a hospital; I just could not stand looking at sick and bloody patients in the emergency room. I do not like a place that exudes pain, suffering and death. When my Nephrologist advised me to be admitted to a hospital, we chose the Regional Hospital in the city that is managed by the government. Upon entering the ER, my nervousness was heightened as I looked on the many patients that are either laid on stretchers or sitting patiently as they wait for their turn to be checked up by the doctor. The room was crowded with nurses (student and registered) and resident doctors busy with their daily routine especially if a new patient is wheeled in from an incoming ambulance. My wife took care of the requirements for admission including my PHILHEATH (government health insurance) requirements so most of the time I was alone and I could not stop thinking of my condition, what will happen to me and my family and the expenses that will be incurred. My brain was overloaded with different images, thoughts and I am confused, nervous and tired. As I am seated and waiting for the doctor, a female nurse approached me and asked me who is my companion and I said that my wife is still outside. The nurse who I learned afterwards is a student nurse informed me that she will insert a Hep Lock (tube where a Catheter (long tube) for IV fluids will be connected) on me. I did not bother to ask her any question and I am quite weak so she tried to insert the Hep Lock on me. She attempted twice until my veins were swollen and the pain has increased so she finally gave up and called a real and experienced nurse who effortlessly inserted the Hep Lock at the back of my hand. I realized then that the first nurse was a student who is not supervised by her Clinical Instructor. After a two hour wait, I was checked up by the admitting physician and finally wheeled to a private room. This was my first admission in a government hospital and I am not aware that these things could happen.

I was relieved when I entered my room with air-conditioning, TV, toilet, chairs and a soft cushioned bed. But it was not long enough as I lay down in the comfort of my hospital bed that a surgeon walked into the room