My battle against a deadly kidney disease

Social media has helped me cope with a life-threatening polycystic kidney disease, linking me with a very active and helpful support group

BUBOY TAPIA

CEBU CITY, Philippines – One gloomy September morning in the middle of a class, my aunt fetched me from school and accompanied me to the hospital room where my mom was staying for several days already. As we opened the door, there was my mother with several intravenous lines and a tube on her nose, lying on her deathbed surrounded by the entire family.

“Wake up, Ma! I want to show you what I made in class.”

I was trying to show my mom a sketch that I made in class. But her eyes wouldn’t open. It was a day I could never forget, for that day she breathed her last. She died of kidney failure at age 39. I was 8 years old then.

It was the desire to know more about my mom’s disease that brought me to the medical field. I worked part-time, sold textbooks to my classmates and applied for a scholarship just to pursue medical education.  

It was in medical school where I learned that what my mother had was polycystic kidney disease or PKD. During her death, PKD was not yet known.

Battle against PKD

PKD is the most common life-threatening hereditary disease characterized by numerous fluid-filled cysts in both kidneys causing damage to the kidneys. Like my mom and all her siblings, I too have PKD, the autosomal dominant kind affecting 4 to 6 million worldwide. I was diagnosed with PKD about 10 years ago.

Having PKD is difficult. My enlarged kidneys make me appear as if I am carrying a baby in my tummy. Back when I was a medical intern, I had frequent headaches and nape pains due to hypertension secondary to PKD.

It took us years to figure out with my nephrologist the right mix of antihypertensive meds to control it. Aside from the drugs to control my blood pressure, I have more than 5 maintenance medications to take each day. I had to regularly submit to several blood and urine tests.

For years, I also had frequent and recurrent bouts of urinary tract infections and cramps which woke me up from my sleep at night. I had kidney stones. I had to contend with experiencing flank pains while at work, and yet I couldn’t just take the usual pain relievers.

I often had cyst bleeds which cause me to have bloody urine which may last for weeks (Believe me, seeing fresh blood in the urine is not a pleasant experience). I had to control my diet and avoid coffee. Recently, I got admitted after experiencing excruciating abdominal pain due to pancreatitis.

Now at age 39, my condition has already been complicated by worsening kidney function warranting a kidney transplant. With all of these, I am lucky to have a supportive family and the most understanding wife. She knew I had PKD even before we got married and yet she accepted me. She never left my side helping me get through the tough times.

LIFETIME SUPPORT. Together they fight a life-threatening kidney disease.

Social media

Social media too has played a role in helping me cope with PKD. With paucity of local PKD-specific support groups, I found online a very active and helpful PKD support group.

It was actually PKD that brought me to social media. It was because of PKD that I decided to start a blog that documents my personal experiences dealing with PKD, hoping it would become a learning resource for my relatives and other PKD patients. From then on, many of my other blogs followed.

Soon after, I became a member of the Cebu Bloggers’ Society which paved the way for me to become a more confident person gaining more friends from various circles even outside the health profession. My social media contacts broaden my support group network. And now, social media is again playing an important part, this time in raising funds for my kidney transplant.

PKD made me a stronger and resilient person. PKD opened my eyes to becoming a teacher offline and online. I have heard people say that PKD is a curse but I see PKD as an opportunity to inspire others. I could have just remained depressed all my life knowing that I have PKD but I chose not to do so. I chose to fight. And I decided the best way to fight PKD is also through PKD – positivity, knowledge and determination.

I dream that one sunny day, I will walk to a world where all PKD patients are up and about wearing smiles continuing to do what they love. For after all, even with PKD, life goes on.

Join me in my journey to realize this dream. – Rappler.com

Doc Narciso ‘Buboy’ Tapia is part of the Move.PH network, among Rappler’s citizen journalists across the nation. He is Cebu City’s first medical blogger. Help him in his battle against PKD through this link.