Why I should not envy others despite my sufferings

Me with my IJ access while hooked to the dialysis machine

Ever since I started my journey to a kidney transplant and having hemodialysis here in Cebu, there is no month that I have not suffered something -- it could either be an infection manifested by fever and chills and now frequent clotting of my IJ access which prompted multiple declogging of the catheter. I've gone through the pain of the different procedures, having stitches in both sides of my neck and both arms. Then there's my CMV result --- negative, which is uncommon.

The past few months, it was summer when people enjoy trips to various destinations showing their pictures on Facebook. While they do that, I was hooked to a dialysis machine. I miss going to the beach. I am sad that I cannot bring my wife anymore to new places that are nice to explore. I have skipped events I used to attend as a blogger. It really appears that all I experienced since my kidney failed are just sufferings because other dialysed patients seem to have no problems with their dialysis as they had gone smoothly.

And at one point I was envious of the good fortune of others. Minalas lang talaga yata ako.

I never lost faith in God although I started to request from Him a short break from the trials I am experiencing recently. Just a brief timeout because it has really been a difficult journey.

But I read this blog post of Valen Keefer, a PKD patient like me, and it made me realize that I have no reason to envy others. I have no reason to complain because all the while as I suffer, I have been provided the opportunity to enjoy something special which is far greater than going to Boracay or Hongkong, or owning the latest gadget.

I look around me. I have a wife who has never left my side who cares for me. I have former students asking me how I am. I have people Cebuanos and non-Cebuanos whom I don't know supporting me through the transplant fund. I have batchmates who expressed their all out support sharing their blessings and giving me medicines. I have teachers, former classmates and a family who check up on me and lend their support even if they are oceans away. I have dialysis nurses who genuinely care for me like any other dialysis patient. I have surgeons who never get tired helping me asking nothing in return. I have colleagues who share their expertise selflessly in managing my case. I have facebook friends who are also real friends who are there to lift my spirits when I'm down with their every comment, like, advice and messages. I have blogger friends who are very supportive. Even my dog Bacter and adopted dog Mushu cheer me up with their presence.

My number 1 cheerleaders, Bacter and my wife

Everyday, I am given the opportunity to experience love and I can really feel the LOVE. What more can you ask for?

Valen is right. Like her, I too am rich in love.

Thanks Valen for making me realize that.

31 years, still hoping for a PKD cure

Exactly 31 years ago, I was with my mom when she breathed her last in a hospital. It was a day after Mama Mary's birthday. She was 39 years old then. I was a kid then who did not fully understand what happened to her. What I know was that she was extremely sick and she had bad kidneys. "Sakit sa bato" was what the family knew then.

Fast forward to the present. Now I know what my mom had was polycystic kidney disease. I am now 39 years old. My family and I went through many challenges, but I am not losing hope.

There is the PKD Foundation "promoting programs of research, advocacy, education, support and awareness in order to discover treatments and a cure for Polycystic Kidney Disease..."  Researches and clinical trials are underway or are ongoing. Tolvaptan, Everolimus, Bosutinib and even water are some of the agents being studied. Many people are becoming aware about PKD although not so much in my country.

So like what my blog's name says, "Even with PKD, Life Goes On". I go on with my life. I am finishing a research undertaking (not related to PKD), I continue to be a teacher to my students and I blog. I continue to do the things I love to do just as my mom did when she was still able. My mom served as my inspiration. Correction. She still continues to be an inspiration even 31 years after her early demise.

Even when she was already losing weight and weak, she was personally present in my sister's graduation. She continued to be a hands-on mother to us all even when she was not feeling well. She made sure she was there to supervise my homework, joined me in fieldtrips, fetch me from school, prepared my baon. She loved what she does and she did not let PKD stop her.

PKD won't stop me either. I know there is hope for a cure. It's out there. And even if I may not be able to avail it, I just hope I can inspire others with PKD as my mom did more than 31 years ago.

It's Nice to Have a Pet Dog

I know, I know. There is probably not any site regarding PKD which mentions this, but I think having a pet dog did wonders for me.

PKD, I can tell from personal experience and from visiting pkd websites is one disease where you will experience pain often. And as pain-reliever, you cannot just take a non-steroidal anti-inflammatory drug (NSAID) especially when your kidneys are already impaired. And so it helps that during pain episodes, your mind does not dwell only on the experience of pain.

This is where pets (in my case, a dog) come in.

My dog seems to have magic. He always manages to bring a smile to my face even in times of pain.



He makes this Scooby Doo-like sound which is funny and "entertains" me and my wife with the way he "sits" on the sofa or the way he positions himself to sleep. Believe it or not, he barks while asleep (like a man talking in his sleep.)

He loves to have a massage but he hates taking a bath. He loves it when somebody touches his belly.

One time I had hematuria and abdominal pain, he seems to be also sick. Like he's also going through my suffering. I have always heard that talk from barrio folks before that pets especially dogs "absorb" their masters illness and I did not believe it but strangely that time, my dog was weak, unable to go up and down the bed, had difficulty standing and was dragging his body to crawl toward us. It was a poor sight to behold.


Luckily, he's now back to normal as I was also pain-free with no visible hematuria. He continues to be the clown in the house bringing us much joy making me forget I have PKD.

Who's Afraid of the Pandemic (H1N1) Vaccine?

One with PKD or chronic kidney disease should be aware that he or she has an increased risk of infection especially when end-stage renal disease sets in. It is to be noted that viral diseases like A(H1N1) flu have a tendency to become more severe in patients with pre-existing medical conditions.

Thus I submitted myself for the annual seasonal flu and A(H1N1) flu vaccination yesterday. (By the way, years ago, I had vaccination against Hepatitis B and Pneumococcus following the ACIP or the Advisory Committee on Immunization Practices' Recommendations for Chronic Kidney Disease patients).

Speaking of the H1N1 vaccine, some (non-kidney disease patients) are still afraid to have this vaccine. These include health workers who are at the frontline of patient care who are at higher risk of getting the pandemic flu from patients. It is because they fear this 3 letter word: "G-B-S".

More than 60 million Americans are said to have been vaccinated against H1N1 in 2009 and the number of  suspected GBS cases possibly-related to the vaccine are considered rare.

GBS or Guillain Barré syndrome is a rapidly developing, immune-mediated disorder of the peripheral nervous system that results in muscular weakness.

According to the World Health Organization (WHO),

"During the 1976 influenza vaccination campaign, about 10 persons per million vaccinated persons developed GBS."

WHO continues,"The reason why GBS developed in association with that specific vaccine has never been firmly established. The potential for the development of a similar risk with future vaccines can never be totally excluded. However, pandemic influenza vaccines are manufactured according to established standards, and are similar to recent well-studied influenza vaccines that have shown no association with GBS."


Therefore, no other clear association for GBS has been found with either seasonal or other pandemic influenza vaccines.


The H1N1 vaccine is expected to have the same safety record as seasonal flu vaccine.

However, WHO advises all countries administering pandemic vaccines "to conduct intensive monitoring for safety, and report adverse events".

I do not know about you, but I think I am better off having this vaccine than ending up with H1N1 especially with the return of students coming from a vacation abroad.


Instead of thinking about GBS, I will just enjoy watching Iron Man 2 instead. Iron Man, War Machine, Whiplash and Black Widow...here I come...


References:

1. http://www.who.int/csr/disease/swineflu/frequently_asked_questions/vaccine_preparedness/safety_approval/en/index.html
2. http://influenzamonitor.com/2010/01/h1n1-vaccine-safety-guillain-barre-syndrome-less-mysterious-more-manageable-and-very-rare/

A face for PKD in the Philippines

It's almost a month now since former Philippine Budget secretary Emilia Boncodin passed away. She was widely respected as a good, honest and dedicated public servant, a model of professionalism and integrity which seems to be a rarity in Philippine government nowadays. I just learned she was a PKD patient.

Below is a link to an ABS-CBN report on Boncodin's demise.

Her life may be relatively short but she lived a full and fruitful life. Despite her condition, she continued to work. A good role model indeed for me and other PKD patients.

I just hope that her death could be a spark to bring to light awareness on PKD. I noticed that in the Philippines, there is still little awareness on PKD perhaps even among physicians and this is despite the fact that Autosomal dominant (ADPKD) is one of the most common life-threatening genetic diseases. It affects approximately 1 in 500 and it does not skip a generation. Perhaps many other Filipinos have this condition and yet, there are no local PKD groups that I know of.

Online or offline, I do not know of any local support group. Many local PKD patients may not be aware that they have it. Or if they are aware, they are still in need of a fellow PKD patient to walk with them in their journey to give them strength.

Without a supportive and "strong" companion, the journey is hard alright.

The meds alone are heavy on the pocket. Potassium citrate to alkalinize urine and prevent stones, antihypertensives, bicarbonate, calcium carbonate, allopurinol, antibiotics to treat or prevent UTI, B vitamins and iron.

The pain in the abdomen and flanks and the other symptoms is something else....The big abdomen...and other manifestations.

However, the journey becomes easier with supportive family, friends and other PKD patients.

The journey is worth taking seeing that some had made their own journey a fruitful one.

Such is the journey made by Madame Emilia Boncodin who now joins the ranks of well-respected and beloved departed public officials like President Magsaysay or Haydee Yorac.

Emilia Boncodin is just the face of PKD that Filipino PKD patients need.

*Classmates, friends, if you know someone with PKD, please let me know. Initially, I want to start an online PKD support group if not a plain group for PKD patients to gather online. Let them leave a comment or an email to this blog.

After my own Good Friday, Back in Action

It was just last week or Good Friday that I had another episode of gross hematuria (with blood in the urine). To recall my prior readings, rupture of a cyst into the collecting system is thought to be responsible for it and urinary tract infection or stress may be a likely precipitating factor. It may possibly reflect a faster cyst expansion.

Anyway, I managed it with bed rest and hydration, in my case, with oral and intravenous fluids. Those days, I got the best care and support from my loving wife who always gives me strength...and the comic relief from my ever loyal but slowly aging dog- Bacter. Of course, I got prayer support from my family and friends. I know God was helping me carry my cross those moments.

No use for being depressed and all.

This week, the Medical Education Unit (MEU) of the Cebu Institute of Medicine (CIM) conducted a seminar-workshop on clinical teaching to Cebu Velez General Hospital residents who are expected to guide the senior and junior clerks during their own rotations. You can see me in the above picture smiling as if nothing "scary" happened to me a week ago. In the background are the residents having their workshop. I discussed one topic on Adult learning Strategy by Knowles and the Clinical Learning Cycle by Cox. I myself got to review these concepts which are very useful in clinical teaching. I particularly liked Ken Cox's clinical learning cycle which emphasizes the importance of preparation, briefing, debriefing and reflection aside from the patient encounter itself to have effective clinical learning. My other colleagues discussed assessment including the OSCE. By the way, for a step-by-step guide on Mastering the OSCE, Click Here!

On the same day of the workshop, at day's end, I got to have dinner with my 2 of my classmates from medical school years whom I haven't seen for a long time. The best part was...the dinner was their treat! Sarap pag libre ano? (lol) ...and yes...they are "more chubby" than me. Hope they don't get to read this blog...